The Leukemia & Lymphoma Society - Fighting Blood Cancers
36 Replies Latest reply: Jan 9, 2013 12:00 AM by sarateak RSS

Info & support for 60 yo mom with AML

sarateak Registered Users
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I've been reading the message boards now for over a month and have finally decided to write in and ask for help in understanding this unbelievably scary journey. Any information or advice, suggestions, feedback, etc. is greatly appreciated! My mom, age 60, began feeling sick in early August (only 3.5 months ago) and she was diagnosed with Sweet's Syndrome, a rare condition that is usually secondary to a blood cancer. She was hospitalized in August for a week but put on Prednisone which helped the Sweet's. She was back in the hospital in September for another week due to another Sweet's flare up. A bone marrow biopsy was done and leukemia was ruled out. The doctors said it looked like the Sweet's Syndrome was presenting on its own and was not secondary to leukemia, however, it looked like there was some sort of bone marrow disorder, not specified. In mid-October, another BMB was done as my mom's blood counts were not good. Her hematologist/oncologist then confirmed she had CMML which was possibly CMML-2. He also said it looked like it was bordering on AML but was not there yet. He put my mom on daily Hydrea pills and she started her first 7 day round of Vidaza injections. She got through the first round without any major issues. Only a couple weeks later my mom started to feel a lot of pain and on November 7th she woke up with excruciating sciatica pain in her left leg and muscle spasms under her right breastbone. She was having trouble breathing from all the pain and was taken by ambulance to Brigham and Women's Hospital in Boston. The doctors did many tests, scans, bloodwork, x-rays, CTs, etc. and another BMB. They confirmed that her leukemia had advanced into AML. They also discovered she had pneumonia and was having fevers on and off. They started her on 7 days of induction chemo on her 6th day in the hospital and she finally finished it this past Saturday.

It has been a gruesome nightmare so far. My mom has had all kinds of setbacks, starting with the sciatica pain and pneumonia, then an infection from the Hickman's line they had put in her chest and it had to be taken out and a pic was put in her arm. She also started having respiratory issues and has needed the aid of nasal oxygen tubes and/or oxygen face mask for the past 4 days. She is already neutropenic. She gets daily blood and platelet transfusions but keeps needing more. As of the last couple days she has a catheter and is basically bed ridden. She is so sick she can barely speak to me and has difficulty keeping her eyes open. She doesn't want to eat as she says she is never hungry and nothing appeals to her. She is so down and depressed and chooses to continually harp on the negative circumstances that have happened and continued to happen. (of course I don't blame her but I want to try and help her think more positively). This whole situation has done such a number on her, it is almost surreal to me. I try and visit her every other day but it's been so hard. My 2.5 year old daughter is also being affected by this and I've noticed behavior changes and sleep disruptions. My mom's heart is breaking as she has been unable to see my daughter in over 2 weeks now. She is the only grandchild on both sides of the family. It's just been too risky to bring her in since my daughter always has some sort of cold or cough. It's just so very sad and stressful and scary.

If anyone can guide me in the right direction in regards to what kinds of questions to ask the doctors, suggestions on how to try and lift my mom's spirits when I visit or talk to her on the phone, numbers or levels to be aware of in terms of blood counts, really any information that could be helpful in this whole process, I would GREATLY appreciate it. I am my mom's healthcare proxy and main support but this has been truly difficult for me. I have been kept in the loop about her status, as her doctors are open with all information and know she allows any and all info shared with me. They say the cytogenics part of the BMB should be ready soon and I'm hoping that can tell us something more. I know we have a rough road ahead of us as my mom probably has at least 3 more weeks in the hospital to recover and then possibly another round of chemo if the next BMB shows it is needed. Her Dana Farber oncologist has already told her she will most likely need another round of chemo before she can go home and then once she is home, she will prob need to come back for a round of consolidation chemo treatment. My mom is truly devastated and voices this despair often. Today she had her hairdresser come in and cut her hair really really short to prepare for the impending hair loss. This has also made her very depressed. She is often tearful. It is so sad for me to see my mom like this. Please let me know any words of advice at this time. I thank you in advance.

  • Re: Info & support for 60 yo mom with AML
    willowbayfarm Registered Users
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    Hi Sarateak,

     

    I'm sure sorry you needed to find us here. A diagnosis of AML really is like being thrown into a whirlwind - there's the instant hospitalization, the isolation, the new language of medical-ese to learn, the treatment, and the side effects...It's just a lot to take in.

     

    Some of the stuff your Mom's been dealing with sorta goes with the territory - Hickman infections aren't all that uncommon, and I needed oxygen for awhile while I was at my most neutropenic, too.  She will continue to need transfusions until her counts recover.  The loss of appetite is characteristic, but it's very important that she tries to eat something, anything, even if it's just a few bites at a time. 

     

    One of the notions we have around here is that it's far easier to be "determined" than it is to be "positive".  I had a hard time coming up with a positive mindset, and often felt like I was lacking somehow when I couldn't achieve it.  But - I could be determined, determined to beat this thing that had bushwhacked me out of the blue and was trying to take away everything I cared about. 

     

    I had my laptop with me at the hospital, and on it I had a slideshow of the people (and critters, I was a horse trainer and dog lover) that were an important part of my life.  It wasn't the same as having them all there with me, but it did help.  Maybe you could do something similar for your Mom. 

     

    Among the things you might consider discussing with her doctors is whether there is a counselor that could visit her; I had some great pep talks from some of the seasoned nurses, they were a Godsend.  What is the status of the pneumonia at this point?  If she could get up and move around, even if it's just a little, that would be better than just lying in bed.  The doctor should be able to help you assess whether or not she's capable of getting some kind of exercise, even if PT comes in and has her do some exercises in bed. 

     

    Having AML and going through treatment is tough.  But the fight is worth it.  Many times, it's about putting one foot in front of the other and doing what you need to do to get it knocked down and on the run.  I was diagnosed just over three years ago, went through the induction and four consolidations.  Life's pretty normal for me now.  It was worth fighting for.

     

    Please keep us posted and let us know what the BMB shows.

     

    - WBF

    • Re: Info & support for 60 yo mom with AML
      paralyzed Registered Users
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      As always...Excellent points from WBF.

       

      Caregiver to 49 year old wife with ALL here. The initial shock lingers for a while...but through one day at a time it will get better. For now, the pneumonia is the focus. Additionally, with the computer///Skype was remarkable. The few times I was unable to be at the hospital, we Skyped her Dr while she was in the room. And the Dr loved it too. Also just being able to connect while seeing the other person was comforting. Not sure why the 21/2 year old is even aware if any of the situation? I'm sure her routine with you or seeing grandma has changed, but I wouldn't think that in and of itself would cause any changes.

       

      This will be a lot for you guys to take in so be patient. Keep us posted!

       

      BTW WBF...My linda trained English riding and worked with horses during our few years in Kentucky. You are lucky...keep doing great.

       

      Jim

    • Re: Info & support for 60 yo mom with AML
      Tex Registered Users
      Currently Being Moderated

      Really can't think of anything I'd write that WBF hasn't already written.  I think Jim's idea of skype-ing is really inspired.

       

      Keep us posted.  Your mom's having a hard time of it but her path really isn't unusual...she just took the hard fork in the road.  Not like she had a choice but many people have completed the journey and come out fine.

       

      Blessings

      • Re: Info & support for 60 yo mom with AML
        felursus Registered Users
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        I'm sorry your mom is having such a tough time.  I second all the ideas voiced by WBF and Jim.  Re: food - she's GOT to eat some calories.  When I didn't want to eat, a friend made me a big container of steel-cut oatmeal with, I think, soy milk, and put lots of "goodies" in it plus gave me a bag of homemade "trail mix" - dried apricots (chopped up), chopped nuts, raisins, craisins, etc.)  I would "nuke" a small portion every morning.  If your mom can tolerate milk products, a milkshake is good, and then there are the things they have in hospitals like Boost.  I also loved applesauce.  I also had some Odwalla drinks - there are some that are high in protein, and they all have added vitamins/minerals.

         

        Another thing: with pneumonia she needs to WALK.  I'm a PT, so I'm the evil person who comes around and makes people get out of bed.  I've also been hospitalized with pna, and I made myself walk (if I dish it out, I'd better "take it" myself).  I realize that you might not be able to get her to do anything, but the MD can refer her for physical therapy.  Trust me, we are used to dealing with people who are very, very sick.  If she can't walk, she can at least sit up in a chair - it's better for the body - esp. the lungs - to be upright.  At the very, very least (and if she's in one of the beds that have this facility) the bed can be put into the "chair" position.  (Those are beds made by Hill-Rom - the upper bedrails have lots of buttons on them that take training to figure out.  I know I was totally mystified the first time I saw one.)

         

        I was only "imprisoned" for one month (at least so far), and I had a room with a view for entertainment (and a TV and computer), but I do get that your mom might just not have the energy for any of it.  I think a "visit" by Skype with your daughter might be a great thing for both of thenm, though.  I know I felt like a "brainless, wet dishrag" for a lot of the time, and I couldn't summon up the energy to do much, but I did force myself to get up and dressed nearly every day - it's the idea of the difference between "day" wear and "night" wear that was one of the things that kept me going.

         

        Hugs,

        Karen

  • Re: Info & support for 60 yo mom with AML
    warrior Registered Users
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    Sarateak,

    I just wanted to chime in though I do not have much new to add all the great advice. My partner was dxd with AML over 20 months ago. After 5 months of induction, consolidation, and an auto- stem cell transplant she is very much back in the land of the living. The dxd of AML is like being pushed off a dock into turbulent seas. Your mom is at a great hospital with expertise in this disease. It is going to be a long up and down journey for her and for you as her daughter, and caretaker. One little piece of advice is that you might set up a blog on one of the great sites like caringbridge. You or you mom can blog and connect with the folks out there who care and support her. These blogs allow for folks to write messages. I  know the outside support meant alot to my partner thru the  early days dealing with this awful disease. FYI there was a woman on the floor who was  your mom's age and she made it thru the treatment is now disease free 20 months out.  The word is determination. Wishing her the will to take on and beat this disease

    • Re: Info & support for 60 yo mom with AML
      sarateak Registered Users
      Currently Being Moderated

      Thank you all for your responses and words of advice and encouragement, it is really appreciated. My mom's condition has finally started to improve and she actually had a good day yesterday and also today. Aside from some stomach troubles (which is common due to the chemo and all the meds) and some fatigue, she is doing so much better. She's off the heart monitor and off the oxygen completely, catheter is out and she is able to use the regular commode by her bedside on her own (with nurse assistance). Also tested negative for C-diff which they thought she might've had for a couple days (we all wore gowns and gloves as precaution on those days) but she did not have it, ended up just being some stomach problems. She is also feeling better too and is not in any pain. Still has a complete lack of appetite but I took your advice Karen and got my mom an Odwalla juice drink and Bolthouse Farms juice. She drank a cup of it while we visited her today. I also suggested she order some applesauce and a shake (she already had an Ensure when we got there). She was finally able to visit with my daughter for the first time today and it was great. My daughter tolerated being in my mom's room for 2 hours (of course there were a couple breaks of walking around the floor and hanging out in the family waiting room). It was a nice visit. My mom also got some good news today about her numbers and they are starting to come up. Most recent blood test shows her blasts are down to 0% which is also good. She'll have the BMB on Monday so that will show more conclusive results.

      And since last Sunday we've been Skype-ing and also using Face Time on the iPods so my mom can see my daughter. However, the hospital made it very difficult as they have a firewall up that blocks any type of video chatting when you use their free wifi. So my husband and I bought a wifi device through Verizon called MiFi and we set it up in my mom's room and don't have any problems with getting on Face Time or Skype anymore. It was $100 for the device and is $50/month for the service but at this point we felt it was worth it so my mom could access video calling to communicate with us at home. It's just too bad the hospital's wireless service doesn't allow access, it would've saved us a lot of time, frustration and money. And my mom wouldn't have had to wait til she was in the hospital for almost two weeks to use it. Oh well.

      And thank you for the recommendation on starting a blog on caringbridge. I had never heard of it but it sounds like a really great idea. I also wanted to thank those that recommended having a "determined" outlook on this journey instead of "positive". I think that worked when I told my mom she can have the determination to get through this and beat the disease in the end.

      • Re: Info & support for 60 yo mom with AML
        willowbayfarm Registered Users
        Currently Being Moderated

        It's sure great to hear that she is doing better.  Sounds like you guys are real computer-savvy and I'm glad you were able to get things figured out so she can be connected with the skype and so forth.  The isolation that is part-and-parcel of this disease is very wearing emotionally.  I second the CaringBridge or Care Pages site - it will save you loads of time and energy, and keep you from having to repeat the same information over and over to the folks that care about her and how she's doing.

         

        One thing I wanted to mention is that while I was in the "slammer", I pretty much wore my own comfy clothes from home - none of the backless gowns for me!  And I think it was important for my morale - it made me feel less like a patient, less like a victim.  As much as I could, I got myself out of that bed (there was a recliner I could hang out in) and tried to act as normal as possible...I didn't act like I was sick.  In fact, I was so good at it that the night watchman offered me a guest pass when I was there after visiting hours on two different occasions!  (Guess he missed that IV pole I was married to) 

         

        If  we count the first day of chemo as day one, what day is she on now?  I do want you to be aware that there could be some more fallout to come until her counts really recover.  I ran quite a few fevers, although she may be past that part by now.  Keep that seatbelt snugged up, just in case. 

         

        Thanks for the update, and I hope things keep improving. 

         

        - WBF

      • Re: Info & support for 60 yo mom with AML
        Tex Registered Users
        Currently Being Moderated

        I'm glad things have improved so much.  That's great to know.

         

        Again, I'm going to second WBF about the clothes.  I pretty much wore t-shirts and sweats or shorts while I was in the joint.  Didn't own pajamas, but they worked well.  And I only wear gowns for short procedures where I'm (preferably) knocked out.

         

        Tell your mom she's doing good work and we're all cheering for her.

         

        Blessings

      • Re: Info & support for 60 yo mom with AML
        warrior Registered Users
        Currently Being Moderated

        Hi glad mom is doing better I will third the suggestion for wearing street clothes in the joint..I think it gets you out of the mind set of a sick person. I have a mobile hot spot from verizon (supports up to 5devices) that let's me have the inter net any place where there is cell phone service...

        I love it... I got that and and an iPad in place of a smart phone we used the iPad to load pictures so when my partner was too sick to read or watch tv she could look at great photos all our friends had sent ...I also had all our friends send real cards so I could cover the walls with well wishes.. Tell mom to hang tough and stay determined

        • Re: Info & support for 60 yo mom with AML
          felursus Registered Users
          Currently Being Moderated

          I will "fourth" the suggestion about wearing her own clothes.  I changed every day.  I wore PJs at night - it was summer, so I had summer ones, but because the a/c was so strong, I also had a PJ jacket from a fleece pair (Costco - and they have them NOW) that I wore.  The sleeve was large enough to roll up and allow the RN access to my PICC.  During the day I wore scrubs.  They are loose and comfortable.  I suggest loose-fitting cotton jersey/sweats or whatever.  I did a whole wash/dressing thing every morning.  On the days I couldn't stand long enough to shower, the nurse gave me some pre-moistened paper cloths they kept in a warmer.  It made me feel "human".  I wore Crocs on my feet: even when they were swollen, the Crocs fit - even over those hospital socks.

           

          Karen

  • Re: Info & support for 60 yo mom with AML
    sonia Registered Users
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    Is your inbox full.  I couldn't write you.

    • Re: Info & support for 60 yo mom with AML
      sarateak Registered Users
      Currently Being Moderated

      Thank you all so much for the support and encouragement, it is truly appreciated. I keep telling my mom about everyone who writes on these boards and how great it is to get the advice and recommendations too. She said she wants me to show her these message boards next time we have time to go on the computer together.

      I have a couple questions that my mom is wondering about:

      1. She really wants to start wearing her own comfy clothes instead of the hospital johnny but does not know how to get shirts on and off with the PICC line that is in her arm. There's no way to get the PICC tubes (or whatever they are) inside the sleeve of the shirt unless they have snaps on the side like the johnny does now. So for all of you that said you wore your own comfy clothes, how did you get your PICC (if you had one) through the shirt without it being underneath your shirt and coming out the bottom of it instead of through the short sleeve part?? (Sorry if this question is confusing!)

       

      2. My mom wants to start wearing head scarves since her hair is now falling out. She is wondering if anyone has any suggestions for how to wrap a regular silk or cotton scarf on the head so it stays. Also, there are some "clips" that my mom has heard of that help fasten the scarf on the head so it doesn't slip off --does anyone know what these are and where to buy them? Also, does anyone know of a brand/type of head scarf that they specifically liked and would recommend buying?

       

      I also have a question regarding the inbox we all have on the LLS site. Does anyone know why the inbox only allows a total of 5 messages (inbox and sent msgs) before it reaches 100% full and you can no longer receive or send messages to others on here? I'm finding this very annoying and am not sure why LLS would only allow 5 messages to be stored in the inbox?! If you know how I can fix this, please let me know, thanks!

       

      Also, Sonia, my inbox was full that is why I couldn't receive any messages from you. I'm sorry if you tried to send something! I think I have space for one more message now though (it says I'm 80% full).

       

      WBF - My mom is on Day 15 today if you count Day 1 as the 1st day of her Chemo. It's day 20 of being in the hospital though. I do know that because she's only on Day 15 of the treatment cycle that things can get worse for a little while before they get better again. It's just that she was SO sick for the first 2 weeks of her hospital stay and now has had 4 really good days in a row. Today was so great, my brother and I visited her and we actually took a walk with her down the halls, IV pole and all! I was so happy to see my mom doing better and feeling better.

       

      Thanks again to everyone for your positive words and ideas!

      • Re: Info & support for 60 yo mom with AML
        felursus Registered Users
        Currently Being Moderated

        OK - 1) re: getting the tops over the PICC - I didn't - the nurse would disconnect me just long enough to  change tops.  They said it was ok to do that for a minute (I'd have the clothes all laid out so I could just "whip" them on.

         

        2)  Re: headscarves: I got these little "Juliette" caps from Headcovers.com.  They are made of thin terrycloth.  They come in white and beige.  I have 3 of them.  They do several things for you: a) they absorb sweat - and you have NO idea how much you sweat from your head; b) they hold the scarf in place (I would take the whole thing off at home and could just pop it back on with only minor adjustments necessary; c) it helps keep the scarf clean, so you can wear it again - just change the cap!   My other choice was some jersey pre-formed scarves - all you have to do is tie.  They come in lots of colors, and I think they also were from Headcovers.com.  (also look at TLC.com).  There are some in regular cotton with pretty patterns also.  I hated covering my forehead and ears, but the latter is great if your mom feels the need.  To tie a regular scarf - it depends on the size.  I HATE anything on my head or dangling, so I didn't do any of those fancy things  (look at the models on TLC.com or Headcovers.com).  With the Juliette cap, if I used a 22-24" scarf, I folded a triangle, tied the sides behind with a square knot, tucked the ends in and then rolled up the point over the knot.  I also had a number of larger ones (from a trip to India some years back).  I folded those into a triangle and then folded the straight edge over about 2-3", and put it over the cap with the fold on TOP.  I tied the sides behind in a half-knot and brought the ends up to the top and tied them in a square knot and tucked the knot and the ends under the fold.   I never did learn how to tie an oblong scarf!  Check the catalogues for different scarfs/styles/ hats.  I was bald all summer, so being as cool as possible was important.  Now that it's cooler, I think it's far easier.  BTW, I preferred cotton (but it was summer).  I would have worn smaller silk ones if it were now.

         

        I don't know the answer re: the mailbox!!!

         

        Karen

      • Re: Info & support for 60 yo mom with AML
        Tex Registered Users
        Currently Being Moderated

        I would think you could lace the tube through the shirt sleeve and then just work the shirt over.  She might need help from the nurse.  I didn't realize the PICC could be unhooked.  Thankfully, I only had one in me for a couple of days while they were waiting to place another Hickman.

         

        I imagine they limit us to five messages in order to allow space on the server for everyone to have mailboxes.  There's a lot of folks who sign up for this thing every year.

         

        Blessings

      • Re: Info & support for 60 yo mom with AML
        willowbayfarm Registered Users
        Currently Being Moderated

        I didn't have a PICC, I had a Hickman.  Like Karen, I just had the nurses unhook my lines for a minute while I changed clothes.  I had everything ready to go and it just took a second.

         

        As for the headwear, I went through treatment in the midst of a record-setting winter here in the Pacific NW.  I opted for some soft fleece caps and layered some bandanas over the top.  I had a couple basic colors of the fleece caps by the time I was done with treatment, and I found a website that had an amazing variety of patterned bandanas.  I might not have had any hair, but I was color-coordinated!  Sometimes I put the bandana on the bottom and layered the cap over the top for variety, sometimes I added a second bandana in a coordinating color.  I tried to have fun with it, as much fun as you can have when you're a bald woman...  The bandanas and the fleece caps didn't seem too slippery, but I did try a silk scarf at one point and it slipped like crazy.  The fleece caps were really soft and comfortable to wear - my scalp was quite tender from the effects of the chemo, so the softness was a real bonus.

         

        The mailbox deal has always been a five message limit - total for both incoming and outgoing messages.  I usually just keep them deleted so the inbox isn't full.  It isn't the greatest system, but it's better than nothing.

         

        I will keep my fingers crossed that tomorrow's BMB goes well and is clear.  Keep her strollin' with the pole if you can!

         

        - WBF

        • Re: Info & support for 60 yo mom with AML
          sarateak Registered Users
          Currently Being Moderated

          Thanks again guys for all the recommendations and suggestions! Today is Day 18 of the treatment phase (and Day 23 of being in the hospital) for my mom. She has amazingly felt good for the past 6 days so far. It's so nice to see my mom doing well. Although her hair did start falling out a LOT today (which was expected but still traumatic nonetheless). The BMB from yesterday has only had preliminary results come back so far but it looks like there's no evidence of leukemic cells. We'll get the final results by the end of this week. My mom keeps insisting that the doctors told her she'll have to stay in the hospital for another round of chemo BEFORE she is allowed to go home. I told her I don't think this is the case since they have to do another BMB on Day 28 to determine if another round is needed.

           

          Does anyone know if they usually keep someone in the hospital for the next round before they get to go home? Or how likely that is? Also, if she goes through the consolidation round for another week does that mean another 4 week stay in the hospital to recover fully? I'm confused as it sounds very risky to go home right after the 7 day consolidation treatment since your immune system is wiped out again......especially since the induction round keeps you in for at least 4 weeks. Why would the consolidation round be different in terms of hospital stay? Sorry for all these questions, I just want to hear about others' experiences. Oh and has it been shown that it's possible for someone to just go through ONLY the induction chemo and NOT have to do any other rounds of chemo afterwards if they are shown to be in complete remission?? Just curious on those stats. I'm wondering what the percentage is of AML patients that only needed the induction round and nothing further (in terms of chemo tx --not a stem cell transplant or bone marrow transplant - by the way is there a difference between a SCT and BMT?)

          Again sorry for all the questions! But I know the ones who respond to this are the ones who have been through this already and have good feedback!

          Thanks,

          Sara

          • Re: Info & support for 60 yo mom with AML
            warrior Registered Users
            Currently Being Moderated

            Sara,

            Great to hear that mom is doing well. Typically in the standard of care for AML there is a round of induction (7:3), and when the WBC and neutrophil return the patient goes home for a few weeks to rest up and fatten up ( so to speak). They will not let  your mom out of the hospital until she is no longer neutropenic. The need for consolidation has been shown over the years for induction does not keep the leukemia from relapsing. The typical treatment plan if chemo only is typically for 3-4 rounds of consolidation  But treatment these days are risk adapted for individual patients. Good luck

          • Re: Info & support for 60 yo mom with AML
            Tex Registered Users
            Currently Being Moderated

            I didn't have consolidation.  My doc wanted me going straight to transplant.  But it seems that folks are usually in for about the week (five days or so) they're in and then discharged.  I have the same questions you do about letting them go so quickly but it's worked so far.

             

            The difference between a SCT and a BMT is really how the cells are harvested.  In a BMT, they take the donor cells directly from the hip of the donor.  With a SCT. the donor is given a series shots to increase the number of the necessary cells in his/her bloodstream and those cells are removed by apheresis. 

             

            Theoretically, there is supposed to be clinical differences, too.  The SCT is supposed to engraft more quickly while the BMT is supposed to reduce the incidents of GVH, either in number, intensity or both.  However, I had a SCT and while I engrafted more quickly than most I also didn't have huge issues with GVH.  And there have been BMT patients with pretty severe GVH.  I think they're still studying whether those clinical differences are actually fact or supposition.

             

            I hope she has a good day today.

             

            Blessings

            • Re: Info & support for 60 yo mom with AML
              sarateak Registered Users
              Currently Being Moderated

              I want to thank you all again so much for the very helpful information and encouraging words. Tex, the LLS should pay you to monitor and answer all the posts on here! You are really an expert on AML and transplant info. It is so helpful to read these boards. Anyways, the update on my mom is that she is doing much better each day and will hopefully be ready to go home sometime in the next week. My mom has a wonderful oncologist doctor who is a fellow at Dana Farber and she has been keeping me informed on my mom's status. She said the bone marrow biopsy results from a week ago look good. It appears there are immature cells but they are consistent w/ regeneration of the normal marrow and do not look to be leukemic cells. They will have to repeat a bone marrow at Dana Farber on 12/16 to make sure that all the cells have matured. For now, the doctors say there are no plans for chemotherapy! We are waiting for her neutrophils (or polys) to be > 500. Currently, her WBC is coming up which is great but the percentage of polys is 0% so it will be a few more days to a week.

              The doctor told me I can ask daily what the WBC is (Today is 1.18). Then you multiply that by 1000 = 1,180 and then multiply by the % of polys (today is 0%). So we have a little while longer until she is READY TO GO HOME...as long as they are over 500. She will need consolidation. It will happen a few weeks after they see her on

              12/16 to discuss. They also want to talk about transplantation to talk about most aggressive therapy.

              So that is the update. It sounds like really good news to me. We are hoping for the best and are just so happy my mom will be coming home soon. Tomorrow marks a month of her being in the hospital. She is so ready to get out of there!

              • Re: Info & support for 60 yo mom with AML
                Tex Registered Users
                Currently Being Moderated

                I think it sounds really good, too.  Your mom has come a long way physically and emotionally.  That's great.

                 

                I've never known a doctor to care about percentages in any way.  I once asked my onc back in OKC what some numbers were.  She shrugged.and told me that they were something for the lab, she never worried about them.  But if it means something to your doc, then hope for things to align quickly. 

                 

                I'm no expert but I never turn down free money.  If the LLS wants to send me a check, I'll be glad to cash it.

                 

                Blessings

              • Re: Info & support for 60 yo mom with AML
                willowbayfarm Registered Users
                Currently Being Moderated

                Getting out of the hospital after being cooped up for a long time is a surreal experience.  Hope things keep perking along and your Mom gets home soon. 

                 

                - WBF

  • Re: Info & support for 60 yo mom with AML
    galassoh Registered Users
    Currently Being Moderated

    Hi Sarateak,

    So happy to hear your mom gets to go home!!! You must be so happy. :-)

     

    I'm hoping to get that same good news for my mom soon...

  • Re: Info & support for 60 yo mom with AML
    sarateak Registered Users
    Currently Being Moderated

    Just wanted to give an update on my mom's status since it's been over a month since I've posted. Her counts rebounded nicely after induction and she was able to go home for 3 weeks. It was really nice to visit her at home and even have my daughter visit since miraculously she did not have a cold or cough! My mom is officially in remission and the BMB after the chemo showed no signs of leukemic cells. Per protocol, my mom did have to go back in last week for a 5 day consolidation round of chemo and returned home this past Monday with no issues. She's probably approaching the neutropenic weeks soon but I'm hoping she will do okay and be able to stay home for the duration of recovery from the consolidation chemo.

    She met with a transplant specialist and her oncologist and they told her they would like to get her in sometime in mid-February to do the reduced intensity SCT. She got a call yesterday from the transplant coordinator and she told my mom there are over 1,000 possible matches in the donor registry for her! We are so excited and hopeful. This is all happening so quickly. I am also going to post over in the Transplant boards since I have some questions that of course my mom's doctors did not answer for her at her appt with them last week. I'm hoping people who have been through this can shed some light on the confusion I have regarding certain decisions and answers the docs have given my mom.

     

    1. What is the difference between a bone marrow transplant (BMT) and a stem cell transplant (SCT) and why was a SCT chosen for my mom? Why wasn't the option of 3 or 4 consolidation rounds chosen?

    2. What percentage of patients who achieve immediate remission after induction chemo and choose not to undergo any further chemo treatments actually end up relapsing? Of that percentage, what is the average amount of time they are in remission before relapse? (are there even statistics that can show these %'s)

    3. Since she is in remission at this time, why wouldn't she just go straight into a SCT now? Why was it necessary to first undergo a round of consolidation chemo if there are no leukemia cells present? And what is the consolidation chemo fighting/killing if there aren't any bad leukemia cells?

    4. I have heard many times that the cut off age for a regular SCT is age 60, which is how old my mom is presently. I understand that after age 60, a reduced intensity SCT is usually the option for patients with AML. What factors were taken into consideration for the docs to decide that the reduced intensity SCT would be best for her (since she's right on the cusp of the cut off age). For example, if this was 6 months ago when she was still 59, would she have been considered for a regular SCT or the reduced intensity? What other factors besides age would've come into play at that time?

    5. What are the actual differences between a regular SCT and a reduced intensity SCT? Can you give statistics of patients who underwent both types of transplants and their rates of staying cancer free for 5+ years or rates of relapse after both types of transplants?

    6. I understand that the majority of post-transplant patients gauge their time of being cancer free by keeping track of the days after the transplant. For example Day 1 is the day after the transplant is done. I've heard people say that once they get to a particular day (ex. Day 28) they are usually released from the hospital, or Day 60 they are able to live without so many restrictions in terms of going out in public places, visiting with family/friends, dietary habits, etc. On what day do you officially (or unofficially) consider the transplant to be a success and the chance of relapse to occur very unlikely?

    7. What are the statistics of getting an infection post-transplant when she is at home?

     

    My mom said the answers she got from the docs were that they do reduced intensity SCT for all people 55 years of age and older. And that the chance of the SCT working is only 30-50%. I was surprised it was such a low percentage since the transplant is supposed to be a "cure" for AML and not just put you in remission like chemo does. They also told her that she would've gone straight to transplant and would've skipped the consolidation chemo if they already had a donor match for her. But they didn't even type her blood for the donor until they brought her in for the consolidation! That certainly does not make sense to me. I'm very confused on a lot of points and know I just need to attend my mom's next appt with the doctors. However I may not be able to do that.

    Thanks for reading! Any feedback is, as always, much appreciated!

     

    Sara

    • Re: Info & support for 60 yo mom with AML
      Tex Registered Users
      Currently Being Moderated

      I'll try to answer your questions here, though maybe they've already been answered elsewhere.

       

      1. What is the difference between a bone marrow transplant (BMT) and a stem cell transplant (SCT) and why was a SCT chosen for my mom? Why wasn't the option of 3 or 4 consolidation rounds chosen?

      The only real difference is in the harvesting method.  With a BMT, they go into the donor's marrow and withdraw the cells.  With a SCT, they take the cells from the peripheral bloodstream after giving the donor meds to increase stem cell production.

       

      There is a thought that with the BMT the patient will get less GVH and with the SCT the patient will engraft more quickly.  There are studies going on to figure out if that's actually correct,  I haven't heard of any conclusions made, yet.  Based on this, they do more SCTs because they want to engraft quickly so the immune system can get on with the work of recovering and try to reduce neutropenia issues.

       

      I have no idea why they didn't do the full consolidation routine with your mom.  In my case, I never did consolidation as the doc wanted me straight in transplant.


      2. What percentage of patients who achieve immediate remission after induction chemo and choose not to undergo any further chemo treatments actually end up relapsing? Of that percentage, what is the average amount of time they are in remission before relapse? (are there even statistics that can show these %'s)

      If there are statistics on this, I wouldn't give a flap.  There is no guarantee -- or even reason to suspect -- that those numbers would apply to any given individual.  Those who decide to put off or decline transplant and do well will be balance by at least one patient who didn't have things work out for them with waiting and missed the boat for transplant.  Statistics are averages.  No one is average.

       

      3. Since she is in remission at this time, why wouldn't she just go straight into a SCT now? Why was it necessary to first undergo a round of consolidation chemo if there are no leukemia cells present? And what is the consolidation chemo fighting/killing if there aren't any bad leukemia cells?

      Consolidation can help prolong remission.  In your mom's case, I'd imagine they were buying some time to get their ducks in a row as transplants can't be worked out overnight.  That they're not going through the full course indicates to me they're really convinced your mom is going to need the transplant.

       

      4. I have heard many times that the cut off age for a regular SCT is age 60, which is how old my mom is presently. I understand that after age 60, a reduced intensity SCT is usually the option for patients with AML. What factors were taken into consideration for the docs to decide that the reduced intensity SCT would be best for her (since she's right on the cusp of the cut off age). For example, if this was 6 months ago when she was still 59, would she have been considered for a regular SCT or the reduced intensity? What other factors besides age would've come into play at that time?

      I can't answer your first question as it will depend on the protocol of the center where she has the transplant.  However, I was 49 when I had mine.  At that time the cut off for full myeloblative ("regular") transplants was 50.  If I'd been six months older, I would have been put through a reduced intensity conditioning, even though I would have been in relatively the same condition.  This was in Seattle.

       

      5. What are the actual differences between a regular SCT and a reduced intensity SCT? Can you give statistics of patients who underwent both types of transplants and their rates of staying cancer free for 5+ years or rates of relapse after both types of transplants?

      I can tell you I've known folks who went through each and they're doing well.  It doesn't seem that older patients on the "mini" protocol have had less success than the younger ones who underwent full myeloblation.  I'm not sure it's so much that the older bodies can't take the full regimen as that, perhaps, they simply don't need it.

       

      There are similar age restrictions on radiation.  I was deemed too old for radiation at the time.  I dodged what, for me, was an unnecessary bullet.  Talking to folks who had the radiation, I'm not the least bit upset I avoided that.

       

      6. I understand that the majority of post-transplant patients gauge their time of being cancer free by keeping track of the days after the transplant. For example Day 1 is the day after the transplant is done. I've heard people say that once they get to a particular day (ex. Day 28) they are usually released from the hospital, or Day 60 they are able to live without so many restrictions in terms of going out in public places, visiting with family/friends, dietary habits, etc. On what day do you officially (or unofficially) consider the transplant to be a success and the chance of relapse to occur very unlikely?

      Nope.  You are released from the hospital when you are able to jump through some basic hoops.  Can you take oral medication instead of requiring IV?  Can you keep your food down?  Stuff like that.

       

      Look, each one of these things is individual.  Our mantra around here is "every case is different."  This is not by any means a regimented thing and things happen as and when they happen.  I was out of the hospital 14 days after my SCT (I had been there a total of eight weeks, though, receiving a second induction as I'd relapsed waiting for my SCT).  Some people are in over a month.  Some people go home on Day 100, other get to go home early and some folks are held over for awhile.

       

      We all have unique and individual responses to a transplant.  We each hit various goals at different times than others.  I sense you're looking for predictability.  Might as well give that up right now as it will only lead to disappointment and anxiety.  There is simply no way to figure out the path through this until the path is in front of you.  Then it's Katy bar the door.  You usually don't have much time to plan, you simply have to react.

       

      Sorry.  I wish it had been different, too.  But it isn't.

       

      7. What are the statistics of getting an infection post-transplant when she is at home?

      I'd suggest you hang the statistics.  They don't matter.  As I've said, no one meets the averages. I never got an infection.  A lot of folks can't seem to stop having them.  To some degree it's luck of the draw.  Hell, it might be that it's all luck.

       

      So, even if you had stats, it wouldn't tell you anything useful.  It might only lead to needless anxiety as your mom didn't hit certain points according to the averages and then you'd wonder why not when the answer is "because."

       

      You can't map this out.  There are no guarantees.  It's all a crap shoot.

       

      I hope this helps.

       

      Blessings

      • Re: Info & support for 60 yo mom with AML
        felursus Registered Users
        Currently Being Moderated

        Great response, Tex.  I would just add on the subject of those who go into remission after induction and don't do consolidation that one reason they like to do consolidation is because "remission" is a relative term: they can only MEASURE certain things, so they "say" that you are in remission if your in-marrow blast percentage is <5%, but they can't tell for sure whether all the leukemic cells have been killed off.  They probably haven't.  They can only go with the percentage, because people who don't have leukemia obviously have blasts in their bone marrow - but they are "normal" cells and not ones that will develop abnormally/fail to develop.  The idea is that consolidation will kill off more pre-leukemic blasts - leading to greater chance that the patient will be able to remain in remission and that if the person does go on to transplant that it will minimize the risk of relapse.

        Karen

  • Re: Info & support for 60 yo mom with AML
    PattiS1211 Registered Users
    Currently Being Moderated

    Hi, Sara-

    I agree with Tex...it's a disease of one, and the only one who matters to you is your mom.  Screw the stats - all that matters is how your mom responds to her protocol.

    That said, I can tell you the following info about my mom (forgive me if I'm repeating myself):

    She was out of the hospital in 3 weeks post transplant.

    Once home, she wound up with a few infections, but nothing terrible.

    Restrictions depend on how quickly her white count / neutrophil count rebounds.  They sent my mom home with Nupogen shots to get her counts up, but she couldn't self administer.  She drove to the hospital every day for her shot.  Once her counts were in the normal range, she was free to live life as she pleased, within certain boundaries.  (No direct exposure to sunlight, watch out around newly immunized babies, etc.)

     

    Tex is also very right about this being a roller coaster.  From December last year when my mom was diagnosed until she came home from the transplant, I had to learn to fly by the seat of our pants.  So did my mom.  I used to tell her that she was starting a marathon and she had to worry about getting through mile 1 before worrying about mile 20.  I have to say, she's 200 days post transplant now, and I remember around day 100, we started feeling some relief - a sense that we could let our guards down a little.  Start making long term plans and whatnot.  We booked our vacation to Disney this summer, and my parents are coming, too.  YOu do eventually get a sense of new normal in your life, but Tex is correct in that you can't predict when that will set it.  Every time she goes for a checkup, we know everything could get turned on its head.  SPeaking of which , she's got her 200 day BMB tomorrow.  Fingers crossed.

     

    Hang in there and keep in touch.

    • Re: Info & support for 60 yo mom with AML
      PattiS1211 Registered Users
      Currently Being Moderated

      Oh, and I wanted to mention: regarding your mom's hair loss - my mom's insurance covered the cost of two wigs.  We had to find a shop that worked with the insurance and we did.  She was amazigly sweet and sensitive and wonderful and so good with my mom's very fragile ego.

      • Re: Info & support for 60 yo mom with AML
        sarateak Registered Users
        Currently Being Moderated

        Thanks for all the helpful feedback everyone! I've been posting now over on the Transplant board but realized I had some responses on this post too. I really do appreciate the info. I just wrote a big long post on the Transplant discussion board as my mom had her SCT consult yesterday and is scheduled for transplant a week from today!

        Patti, how did your mom's 200 day BMB go?? Has she had to get other BMBs since her transplant? Also, I saw that you wrote about your family going to Disney this summer. That is so awesome that your mom can go with you! Will she be at her one year post-transplant mark at that time? The doc said yesterday that my mom cannot go into any public places for a full year after the transplant.....meaning she can't travel on airplanes until a year from now. We want to do some sort of celebration trip altogether as a family when the time finally arrives. I think my mom will deserve it after a full year of restrictions and precautions! No indoor public places (like the mall, movies, supermarket, stores, etc.) for a full year.....wow......at least they said that after the 1st three or four months she will be able to eat takeout food again and sit in an outdoor area of a restaurant to eat if they have one. The whole sun exposure thing is scary too. They said to always wear SPF 70+ when going out in the sun and really limit exposure. So no beach trips for a while. Well, it'll all be worth it when my mom gets to resume her life after all this.

        Thanks again everyone.

        • Re: Info & support for 60 yo mom with AML
          Tex Registered Users
          Currently Being Moderated

          I can't imagine why she'd be under such a tight set of restrictions following her transplant.  I was in the hospital almost immediately upon arrival in Seattle and I could still write a number of restaurant reviews of Seattle eateries from the remainder of my 100 days.  I saw a number of movies (matinees) and had a number of places, like malls, I hung around in.

           

          I mean, always do what your mom's doc says but my guess is she won't be under such strict rules once she's treatment through and has been evaluated.  Time will tell.

           

          Blessings

        • Re: Info & support for 60 yo mom with AML
          PattiS1211 Registered Users
          Currently Being Moderated

          Hi, Sara!

          I'm with Tex.  I think the doctors are kind of laying out the worst case scenario for your mom in terms of restrictions.  I know that my mom was eating takeout food in the hospital within a week of her transplant - she was transplanted on April 12th and we sent leftover dessert after Easter and had cake for her birthday (which was April 19th).  I also know that my dad brought her pizza to the hospital after her transplant, too.  And we went to Bermuda with my parents last summer, before her GVH kicked in.  She wore heavy sunscreen and stayed in the shade most of the time, and was fine (went with her doctors' blessings.)  Actually, funny story.  I played my mom's cancer card to get us an umbrella at the beach one day.  Brutally sunny day, and we all went to a snorkel beach.  We had been able to rent an umbrella the day before with no problem, but when we went back, there was some big party coming onto the beach and they were reserving all of the umbrellas for them.  I marched myself up to the rental shack and told them that my mom couldn't be in the sun b/c of her transplant and was there anything they could do to help.... the sweet kid behind the counter got us an umbrella, set it up and refused to let us pay. 

          Anyway, my point is that my mom's restrictions always depended on her white count and neutrophil count...so I'd say don't figure that she'll be totally on lockdown.  If her counts rebound fast, she could be back in the mall with the rest of us in no time.

           

          And my mom's 200 day BMB came back clean, 100% donor cells.  Happy.  She's back on prograf to deal with some GVH, but nothing too terrible.  She had two BMBs since transplant - 100 days and 200 days...everything else has been bloodwork. 

           

          How's your daughter doing?

  • Re: Info & support for 60 yo mom with AML
    niciop Registered Users
    Currently Being Moderated

    Hell Sara, Hope your mom is doing well, she is at a great facility, which I think makes a difference.  I developed AML 7 months after breast cancer treatment.  I found out there are 15 kinds of breast cancer, and many different kinds/stages of AML. The recommended treatment and prognosis is different depending on the type of AML you have.    Anyway, I am not very brave and I take Xanax and it really calms my fears.  If your mom still has some depression and anxiety, I would suggest some Xanax or an antidepressant because it will help her mood, appetite, sleep, etc. which are all very important in recovery.  I go places and wear masks when my WBC is low.  I have had many stares, but I don't care.  So if your mom goes out in the next year, she might consider wearing a mask.  There are some fun ones on the internet. 

    • Re: Info & support for 60 yo mom with AML
      sarateak Registered Users
      Currently Being Moderated

      My mom decided to go with the full-intensity SCT and was admitted to the hospital last Thursday. She had two Hickmans surgically placed in her chest that day and then started 4 days of the chemo on Friday and ended it today! It definitely was the strongest dose of chemo compared to her other two rounds (induction and consolidation) as it immediately made her lose any appetite at all and she also felt nauseous and got sick once so far. It's also causing stomach problems but that is to be expected as the other chemos did too. Anyways, the plan is to have her rest tomorrow, Wed and Thurs and then do the SCT on Friday. The nurse told us today that it basically only takes 20 minutes and then it's all done. A simple infusion.......amazing! Then my mom will be monitored daily for approximately 3 more weeks before she is released to go home (barring any complications).

      The thing about BWH is they have an extremely strict protocol when it comes to what you can and can't do. All visitors must be in perfect health and not have had any sickness (including a cold) in the 3 days prior to the visit. They must also wear gloves and a mask during the entire visit with the patient. Even the week leading up to the SCT. The floor my mom is on is absolutely horrible for getting some exercise and trying to "take a walk". It's a small semi-circle with a very narrow crowded hallway. You can basically walk 20 seconds one way, then turn around and walk 20 seconds the other way, back and forth, back and forth. My mom and I walked today (her dragging the huge IV pole with like 5 bags hanging off it) both of us wearing masks and gloves. Lovely. She started to have a full blown panic attack and we had to go back to her room so she could get a PRN of Ativan. (Niciop, you are totally right about anti-anxiety meds helping with mood, sleep, appetite!!!) The Ativan really helps my mom calm down, especially since she is an extreme worrier to begin with (and has been my whole life and before I was even born).

      The floor she is on is also pressurized and has special air quality (for example there are two sets of doors to go through to enter the floor and there are huge signs that instruct you to only open one door at a time, wait for it to close, then open the next door and walk in the unit). There is no way this floor would EVER allow take out food to be brought in or pretty much anything for that matter. One nurse even suggested that when I bring my purse into my mom's room for a visit, I should put it in a clean plastic bag, set it aside, take out any things I may need to use during the visit (cell phone), wipe down these items with sani-wipes and set those aside in another area. Then take off the gloves I was wearing to do those two procedures and put on a fresh pair. Woah.......it's like being in the Twilight Zone. I do understand all this is done to minimize risks to the patients but it doesn't sound like any other hospital has these types of protocols in place.

      Anyways, I feel like I'm venting so I apologize!

      I can't wait until this part of the process is over and my mom can go home. Even though there will be so many restrictions in place for her for so long, at least she'll be home and able to enjoy outdoor activities since the weather will be warming up soon. By the way, Patti that is great news about your mom's 200 day BMB being clean and 100% donor cells!!! Best news ever! Also thank you for asking about my daughter. She is doing great and is able to Skype with my mom daily. Before my mom went into the hospital last week, we were able to spend quite a few days with her and my daughter really enjoyed those times. Of course my mom did too. She always says that my daughter is the best medicine in the world for her.

      Alright, thanks again for your feedback, comments, stories, etc. I really look forward to reading everyone's posts!

      • Re: Info & support for 60 yo mom with AML
        felursus Registered Users
        Currently Being Moderated

        Many years ago (in the '90s) I worked in a hospital with a laminar airflow unit.  They had some transplant patients on it, but other patients with severly compromised immune systems secondary to medical treatments were there as well.  When you entered the unit you came into a locker room.  You left all external clothing (eg. labcoat) in a locker and donned a "space suit", cap and booties.  After that you could enter the unit proper.  There was a nursing station with patient charts, etc., and a big supply area.  There were 5 "roomettes" for the patients.  The air pressure in the roomettes was higher than that in the rest of the unit.  The outside wall of the roomettes was glass with no door - only an opening.  They had curtains on the outside that could be pulled across for privacy.  Each roomette had a bed and the usual hospital room cabinets and a TV with VCR (latest thing in those days).  When a patient was first placed in the roomette he/she came into the unit, showered with special soap and then was scrubbed down with an antimicrobial wash by a nurse in the space between the curtain and the glass wall.  Once in the roomette, the person wasn't allowed out at all as long as they were deemed "high risk".  Staff entering the roomette had to scrub - just like going into an OR.  Anything that was brought into the roomette had to be sterile, so sheets, etc. were double packaged and were brought in by having a "dirty" nurse stand just outside the roomette and a "clean" nurse inside.  The "dirty" nurse opened the outer wrapping without touching the inner packaging, and the "clean" nurse took the sterile-wrapped item out without touching the outer wrapping.  It was, obviously, a ver labor-intensive process.  Whenever I had patients on the unit, I had to cut back my caseload because of the extra time required.  At least your mom has SOMEWHERE to walk - my patients couldn't leave the roomette until their counts came up a bit.

         

        We'll all be thinking of you and your mom in the days ahead and pray that all goes smoothly.  BTW, purses are a great source of infection: we put them down (all without thinking about it) in insalubrious places (eg. on a floor), so they are a great source of contamination.  I'll be most anxious to hear how she does, as I'm another over-60-year-old.

         

        Hugs,

        Karen

      • Re: Info & support for 60 yo mom with AML
        PattiS1211 Registered Users
        Currently Being Moderated

        Hi, Sara-

        I'm so glad to hear that everything is underway.  I remember the chemo before the transplant being really hard on my mom, too - I don't remember the induction rounds being so difficult on her as the conditioning chemo was pre-transplant.  It really is amazing that the whole procedure takes only 20 minutes or so.  I wanted to be there when she got hers, but I had to be in work that day (I had just come back from maternity) so my sister and my dad were there.  The transplant coordinator gave my mom a card from her donor to read as the infusion was happening - it was a really nice moment.

         

        I hope the restrictions aren't too much for your mom to deal with - I know how frustrating the confinement can be but the anti-anxiety meds are a godsend, seriously.

         

        Keep us posted!!

        Patti

      • Re: Info & support for 60 yo mom with AML
        Tex Registered Users
        Currently Being Moderated

        Venting is part of the reason these forums exist.  So, feel free and don't apologize, unless it makes you feel better.   We're used to it.

         

        That is one helluva air tight situation your mom has going on.  I suspect that infections aren't going to be much of a concern for her.  Make the best of it and remember, even when it seems like it will go on forever that it's really a relatively temporary inconvenience.

         

        A little something to keep in the back of your mind, in case it becomes helpful down the road.  Xanax is a stronger and better anti-anxiety med than Ativan.  However, Ativan is a kind of little miracle drug in that it helps with so many symptoms and situations.  It not only calms nerves but also helps with nausea.  So they'll keep suggesting it.  If your mom's anxiety increases, as time goes on, you might find a day when you want to ask for that.  Again, just something to keep in the background.

         

        I'm glad your mom is doing okay and that they're planning to get her underway soon.  Please keep us posted.

         

        Blessings

  • Re: Info & support for 60 yo mom with AML
    sarateak Registered Users
    Currently Being Moderated

    Wow.....I haven't been on the boards in almost 11 months. I know it is time for an update and I'm so happy that I have positive news to report. My mom had her SCT on February 25, 2012.....the same day I found out I was pregnant with our second child! My husband and I told my mom our wonderful news only hours before her transplant. The transplant went well and my mom was home several weeks later with very strict restrictions in place. It is now over 10 months since her transplant and she is doing well. She had a bit of GVHD but I don't think it bothers her all that much these days. She still tends to have bad days here and there with headaches, fatigue and overall "feeling bad" but she has had many many good days too! Unfortunately, due to her compromised immune system, we have not been able to see her too often since the transplant. My 3.5 year old daughter is almost always sick with a runny nose or cough or something! And now with our 2 month old son, we have to be careful since my mom supposedly can't go near him after he gets vaccinations. And he's already gotten several and will continue getting them throughout the first year of his life and after that as well!

    That is a major question I wanted to post here and see if anyone has had experience with exposure to people who have had vaccinations/immunizations that contain either live or dead viruses. The information my mom's doctor has given her has NEVER been clear enough. At first he told her that when my son was born she couldn't come to the hospital to visit at all (she didn't) and because he was getting his Hepatitis B vaccine in the hospital (all babies do usually) that she couldn't see him (even be in the same room as him!) for 2 whole weeks! I found out Hep B vaccine is a dead virus and spoke to several other doctors like his pediatrician and another pedi from a different practice and they said it's fine for an immunocompromised person to be around a baby that got a vaccine with a dead virus in it. It's the live vaccinations like the flu mist that you can't be around. I am so confused! Then, my son just had his next round of shots at his 2 month check up last week and one of them is a little drink that is the Rotavirus vaccination. It's live but I read online that immunocompromised people, specifically stem cell transplant patients should avoid contact with a baby who got this vaccine for 1 week and that is only if you are changing their diaper! Which my mom would never do anyways for fear of germs. HOWEVER, my mom spoke with the nurse that works with her doctor and she told her that she can't be around the baby for FOUR WEEKS. Nevermind just avoiding changing his diaper, they are saying she can't even go near him for 4 weeks! I would seriously like clarification on this matter as I do not think they know what they're talking about. In fact, the nurse said she didn't know about exposure to people who have had recent vaccinations and had to email another doctor (an infectious disease doctor) about it.

    It would be helpful to hear from anyone who has children or grandchildren or even younger siblings that had vaccinations and whether or not you were allowed to be near them or hold them.

    I appreciate any info! Thanks and I'm glad I was able to come back to the boards after all this time and say hello! It's been a crazy year to say the least! : )

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