I would first like to say thank you for all of the support and well wishes through Caroline's relapse. For those of you who weren't on my thread "Possible Relapse - Please Help". I would like to give a little background.
My wife Caroline, who is 25 years old was diagnosed with AML M2 in August '08. In CR1 by September and finished up with 4 rounds of consolidation in January. Then along came April 16th... We went in for a normal CBC and platelets had dropped from 120-140 to 42. Her Onc did an immediate BMB, and we had a week to wait for the results.
One week later... back to her ONC at UPENN and we get a positive test result with 25% blasts in the marrow. None in the blood. Caroline was admitted that day and started a regimen called "MEC". Its for relapsed AML with CR1 of less than a year.
She has completed the regimen and so far the only side effects is a nasty rash where the dressing covers the hickman. We had these issues with her PIC last time and none of the available dressings seem to work.
Her counts have really started to fall now, with her ANC at 400 yesterday she is now neutropenic. Now stuck with the nasty hospital food! Ickkk!
Next step is to get an empty marrow on Day +14 (I think we are on +7) and then get to CR2 on the day +28 BMB. If all goes well with that she is scheduled to start conditiong for a 10/10 MUD transplant from 3 possible donors on June 7th. This will include Cytoxin and full body raidiation.
She is still feeling well and hasn't had to have any transfusions as of yet. I can see those coming on either tomorrow or the next day. She is just a bit tired from the low hemoglobin (around 8.5 i think).
I will continue to post updates through her Journey.
Thank you all,
Don't know what dressing they are using on Caroline's Hickman, but I developed an itching,burning red rash from the Tegaderm that was originally used. When the rash even spread out from under the dressing, I would apply Desitin (diaper rash ointment) to only the exposed area to soothe and clear up at least some of it. Since I ended up having the Hickman for 9 months, we were very fortunate to find out that there was a clear waterproof dressing called IV3000 that I was not allergic to. It was not available at the cancer center infusion clinic (we had to order it from a medical supply company online), but the nurses in the hospital transplant unit were quite familiar with it. You might want to check it out for Caroline if you haven't tried it already.
Wishing you guys all the luck in the world -- you are too young to have to go through this -- but hopefully you will emerge on the other side to enjoy a long and happy life together.
I was 22 when dx with my aml, m2 also with normal cyto.I am about 1 yr 1 mo post bmt. I went right from induction, had a break and went right into transplant. I had TBI and cytoxin also. The cytoxin was given for 2 or 3 days, and I had no problems with it at all. The TBI gave me nausea, and I was burned pretty bad also. The mouth sores were one of the worst parts of transplant for me.
Now, post transplant, I just have problems with fatigue and complications from steroids. In addition, I was just readmitted to the hospital today due to pancreatitis.
It sounds as if your wife and I will be getting close to the same treatment, so let me know if you have any questions,
For the rashes on the hickmann site we found out that our daughter is allergic to Chloroprep that they use to disinfect/clean and used Betadine (sp?) instead for the same. Also like cranky suggested IV3000 may help too.
Wishing and praying for remission and good health for your wife .
I am glad Caroline is feeling pretty good. During my first induction I felt like crap. My second induction was so much better. I felt "ok" all the way through it. It really helps to be feeling "ok" when you have so much physicial and emotional stuff to deal with.
I also had skin issues around my power port area. One of my docs. had just finished a rotation in the burn center and he had an idea to cover the effected skin with something they used on burn victims, then covered that with the sterile dressing. The dressings got changed twice a week but whatever that was that covered the raw areas stayed in place until my ANC hit 1.0. This may be what Cranky is talking about, IDK
Wishing you both well!!!
Hi adam, glad to see you found your way over here although i wish you all did not have to come. Just wanted to welcome you here, i know i talked with you on aml forum, don't know if i mentioned my son was 20 when transplanted. Caroline has age on her side. Keep her walking and staying active, it helps every organ system and prepares her for transplant. Feel free to ask questions, lots of experience on this forum and somebody here is bound to have information for you.
So sorry to learn of your wife's relapse. Her story is all too familiar here and lots of patients do very well with SCT. My daughter was diagnosed just before her 20th birthday with AML M2, achieved a CR but relapsed about a year later. She was also re-induced with MEC--it worked!--then on to SCT. That was about 3.5 years ago, today she is enjoying and getting on with her life. I remember how worried we were at relapse, just wanted you to know that there are lots of success stories. Just take it one day at a time, and know that there are lots of reasons to be optimistic. Hope all goes well and uneventfully with Caroline.
Sorry you had to find your way over here, Adam. But since ya'll are facing this, I'm glad you're here.
If the rash on the Hickman is related to the tape, they do have an ointment you can put on before the tape that helps some. I didn't have any problems with mine until about nine or ten months with the thing. My skin finally just wore out and needed some help. It did help, though.
I can't remember what it was called. It might be the Tegaderm Cranky was mentioning. That sounds familiar.
Anyway, it might seem insignificant but it's a real issue. Stay on the docs and/or nurses until they find a way to deal with it. There is no reason to deal with months of discomfort. There will be plenty of chances to soldier on, you don't need to do this one if you can avoid it.
I had become allergic to everything but paper tape before I even heard of a Hickman, but I sure wish someone at my hospital had known about an ointment you could put underneath and still allow a dressing to stick.If you can find out the name of what they used on you that would be so helpful -- I'm even allergic to band-aid adhesive now. The ointment wasn't Tegaderm -- that's a clear sheet of some material (plastic?) with adhesive around the edges that they use as a protective dressing. IV3000 is the same thing, but some folks don't get an allergic reaction to it (different adhesive?).
I'm with you -- patients should do any and everything to make sure that unnecessary discomfort is taken care of.
The ointment I believe tex refers to is on a large q-tip, but before you put the bandage on, after its cleaned with the prep pad, you use the swab where ever the bandage covers, and about an inch or so around it too, which just seems like water, and wait a few mins for it to evaporate, and, then you put the dressing on. Im not sure how it works or why, but it does.
I could only tolerate the bandages if that was used. If not, my skin would do some funky things.
Thanks for the info. That it worked so well for you, too, makes me want to find out if I can get nurses to use it if needed. I certainly can't claim to know (or remember if I ever did know) the name of everything that's been used on me, but it still would be helpful if I could be more specific than " I want the stuff that comes on a Q-tip" when they next go to put tape on me.
Any additional info would be greatly appreciated.
Adam and Caroline, I'm glad to see you over here, but wish you didn't have to be here at the same time. Caroline's stats are a lot like mine. AML M-2, relapsed, good pool of 10/10 donors. The only thing different is, I relapsed at the 2-year mark, so I didn't get MEC to get back into remission. I did want to say that it took me two rounds to get back into remission, so if it doesn't happen on the first try, don't get discouraged. My transplant experience after relapse has been very positive, it's been almost 10 months, and I can truly say I feel normal again. Hoping for the very best for her, she has youth on her side. Keep us posted.----Pam
Thank you for all the tips and tricks relating to the Hickman. I have relayed them to the docs and nurses to find out what else we can do. I know that we have used the IV3000 (correct me if I'm wrong) dressing which also caused the rash. For now they have gauze and tape covering it and are applying some sort of steroidal cream outside the dressing on the rash.
Now for updates... Caroline was feeling great until about midnight last night when the dreaded neutropenic fevers set in (yesterday WBC was .9 and ANC didn't come back yet, but it was 108 on Friday so I'm guessing its 0). Everything started around midnight with a temp of 100.8 which steadily rose to 103.7 even with 650mg tylenol and a few liters of fluids. They started antibiotics immediately and had it down to around 102, but non the less, the last round of vitals we are at 103.3 again (8 am this morning EST). So here comes 650mg of tylenol again and we will see if it will break.
I can't quite remember her fevers being like this (pretty horrid shaking chills) leading up to the spike, but I was in some pretty nasty shock during the first induction, Although we had very similar issues during a hospitalization in February for an infection that did this whole fever thing for two weeks before disappearing. They did every test in the book and never found anything.
So they have done the whole chest x-ray/chest CT thing and they have both come back clear. Now waiting for results on the blood and central line cultures.
Just hoping the fevers calm down because she is so uncomfortable and I can't stand seeing her like this. Its crazy how a night can go from friends hanging out in the room until 11 PM having a good time to the nasty fevers.
I will keep this thread updated as we progress to transplant and want to thank everyone once again for their feedback. I wish I could respond to everyone of you, but I need to take care of Caroline.
Some positive news - The dose of tylenol this morning broke her fever, so now at least she is more comfortable.
Now we wait to find the source... if we ever do, as in her case they have never found anything in the past. Temps have just gone back to normal when neutrophils return.