The Leukemia & Lymphoma Society - Fighting Blood Cancers
1 2 3 24 Previous Next 346 Replies Latest reply: Sep 25, 2013 10:25 PM by FRAN641 RSS

Got room for another newbie?

moogaw Registered Users
Currently Being Moderated

Hi my name is Cindy and I have recently been diagnosed with fNHL Stage 4.  This has all been a bit overwhellming for me as you all can remember when you first received your diagnosis.  My husband's co-worker suggested this site as a caring environment where I could get information and help & support.  For the last several weeks I have been checking in almost daily, lurking in the shadows, but getting so much encouragement from your many posts.  I finally decided this morning to come out of the shadows and introduce myself and see if you have room for one more newbie.  I went to my doctor yesterday to have all my tests put in context and come up with a treatment plan, so after a couple of months of testing and waiting it seems like things are going to happen really fast.  I guess I need to hang on and go for the ride of my life.  Tomorrow I talk to the surgeon about having a port put in and will be actually getting it in on Friday.  Thursday I have my Chemo education class and then I'm scheduled to start Chemo on Tuesday.  My treatment will be 6-8 rounds of CHOP-R.  I know this was probably the same treatment that many of you are on, so any advice you can give me about what to expect will be greatly appreciated.  My doctor told me to plan on 8 hours for the first treatment because they go slow checking for reactions.  That seems like such a long time - what did you do to occupy your time or does it go by faster than it seems?  I want to keep this short plus there is just so much that I don't know about all this - any information or hints you'd like to share with me will be appreciated.

 

Thanks!

Cindy

  • 1. Re: Got room for another newbie?
    kgirl Registered Users
    Currently Being Moderated

    Good morning Cindy, and welcome.  None of us expected to be here and quite frankly would rather be pretty much anywhere else   It wasn't that long ago I traveled this road you find  yourself on, the diagnosis, the Port placement, the chemo and the basket of goodies that go along with treatment.  I also was diagnosed with Grade 2, Stage 4, which immediately sent me into a whirlwind of fear and trepidation, from which I have emerged, slowly but surely, day by day, step by step.  For me the Port placement was easy, conscious sedation used, walked in, walked out (did take along a driver, didn't want to take a chance plus I think they pretty much insist you have a chauffeur   The chemo treatment, while no walk in the park either emotionally or physically, is completely doable.  My scheduled days were all 8 hours.  Some of it I slept through (the pre-meds can and do make you sleepy) watched TV, talked on the phone, did crosswords and played games on my laptop.  I also moved around quite a bit, hauling along my IV pole to visit other patients and make new friends.  I think from personal experience and from reading posts that the five day Prednisone regiment that comes after each chemo treatment can be a bit difficult because it can (not always) cause mood swings and for me, the stuff just set my hair on fire, was lining cupboards in the middle of the night.  Most all experiences differ, yet are eerily the same.

     

    Don't want to overload your information circuits, so I'll close by saying any questions, thoughts, rants and raves are welcome here.  I think you will find many friends here willing and able to help you through this journey, so never hesitate to reach out.

     

    Until later, strap in tight and keep your arms and legs inside the ride at all times!!!!!

     

    Kgirl

     

    It took me six months to gather up the courage to post here and I am so glad I finally did!

  • 2. Re: Got room for another newbie?
    jgold Registered Users
    Currently Being Moderated

    Welcome aboard.... hope we all can be of help.  Just know one thing, you are not alone.  I am also Grade 2 Stage 4 and will have my sixth chemo session tomorrow.. and hopefully last, but as you said I might need two more (GRRR).

     

    First of all... ask questions all sort of questions to your treatment team, they are there to help you out, you must feel at ease with them and trust them.  If you do not build a trust factor, seek another oncologist, you need to trust them implicitly as you will have a long term relationship with them.

     

    Nonetheless I am doing great and feeling better than before I started Chemo (you never realize how bad you felt before because NHL is so slow growing it take a little out of you over time).  The treatment as said before is not to bad,  Expect to have a slight reaction to the first Rituxan infusion (most of us have it).. I had what is called SHAKE AND BAKE..... I shivered and got hot, but the reaction was short lived and the rest went well.  All other chemos have been uneventful with the exception of Prednisone devil and some nausea that I have controlled with food intake.

     

    Be prepared to be amazed because after the first Rituxan.. the lymphomas will melt away.. it is quite uncanny, but I am still impressed, but each persons reaction to treatment is very individual.  Thank G_D my reactions have been minimal and I have been able to maintain a normal routine returning to work the day after Chemo.

     

    What do I do while infused............. I snore, I get bored, snore a bit more, watch TV and get bored, walk around and smile at people and drive the nurses nuts (in a kind way).

     

    One thing though... remember always maintain a positive attitude, I am strong believer that the psyche/mental attitude plays a vital role in your ability to heal, also look at life with humour it will help your better half handle the stress.

     

    Most important of all live life to the fullest and maintain as best as possible normal daily routine, and don't forget to come by and become part of the family.

     

    Best

     

    Jim

  • 3. Re: Got room for another newbie?
    FRAN641 Registered Users
    Currently Being Moderated

    Welcome Cindy.  Everyone around here is so helpful with all you questions and concerns. Just ask away.

     

    I was diagnosed in August with fNHL grade 3 stage 3 and I just had #4 of R-CVP.  I didn't get a port so I get an IV each time.  On the 25th I get a PET scan  to see if all the cancer is gone so I may be done with chemo, my fingers and toes are crossed.  

     

    I hope you do well with your treatments and these guys are testimony that it works and that's the most important thing to me.

    Blessings,

    Fran

  • 4. Re: Got room for another newbie?
    MrPat Registered Users
    Currently Being Moderated

    Hi Cindy;

     

    I won't repeat what Kgirl and Jim said. They are spot on with their advice.

     

    Jim mentioned that most have a reaction to the Rituxan. The first infusion produces the strongest reaction so they take it slow. That's why you have to plan on 8 hours. My reaction was temporary and minor. I had an immediate sore throat ans stuffed up head. Kind of like getting an instant cold. It went away by that evening. The remaining infusions of "R" were a non event. Don't fret about your first time. Just tell the nurses if you are feeling something new and different. If the nurse is concerned they will slow down the drip or turn it off for a short period and then start up again. Most people tolerate the "R" infusion well. When they tell you in Chemo class to drink lots of water during the next 48 hours take them seriously. That helps your body dump the poisons and cancer debris. You will recover faster this way

     

    I bring my iphone for music along with my noise canceling head phones. That way I can block out the multiple TV programs, which makes reading possible. I have been reading 1/2 book per treatment. If you do something that

    grabs your attention the time passes with out notice. Find out if they offer snacks, drinks, etc. I bring one of those big 7-11 type coffee mugs and fill it at the water cooler. I also bring crackers and trail mix to munch.

     

    As Jim said, nurture your positive mental attitude. I'll add enjoy as much of the day as you can. Plan on working on your "bucket list". I've been on an Alaska Cruise, fished Alaska, found my ancestors in Ireland and followed Darwin's trail in the Galapagos since my diagnosis. After treatment I'm fishing in Panama and boating in the Bahamas. Enjoy today because dress rehearsal is over.

  • 5. Re: Got room for another newbie?
    mcee Registered Users
    Currently Being Moderated

    Hi Cindy, I am doing R-CHOP for DLBC lymphoma.  I get my fifth infusion on 1/20.   And one after than unless a little olde tumor in my spleen hasn't quite given up. 

     

    I'm not going to cross that bridge til I get to it.

     

    So far the rest of the gang have given some great advice.   The first rituxan can be mighty slow, if you have a reaction.  I was fortunate...just a bit of face itch and they scrambled, put me on a couple of monitors and shot me with a bit of benedryl but did not have to slow down the drip.   No problems with it (once my nose itched for a couple minutes during 2nd infusion) after that.    R-CHOP is doable.  It hits everyone a bit differently.  When you get the red stuff, start sucking on ice chips, start a bit before (ask the nurse to get you some ice chips before the drip starts) and suck on them the entire drip.   The amount I get takes less than an hour to drip in, yours may be different, but the ice supposedly numbs your mouth cells enough that the red stuff (doxiruicin???  Help me out everyone..chemobrain....haha) won't affect them as strongly, and you may be less likely to get mouth and tongue sores.   I have not had any, so far, and hope to keep it that way.   Sucking on ice chips for about an hour is a royal pain, but frankly, I'll take that over a sore mouth any day (again, your mileage may vary). 

     

    Also, for bone pain try Claritin, generic version is very inexpensive at the big box stores or house brand, not the high-end claritin, just the basic Claritin or generic.  Take this starting a day or two before your infusion if you can (and your Oncologist agrees, of course) because it has been found that for many, it reduces the bone pain the Neulasta shot you will get post-infusion can cause.  Take the claritin for about a week after, some I've talked to never stop taking it (I have stopped it for a few days in the third week post-infusion, but then it is time to start up again for the followign infusion).   It has worked.   I still get bone pain a bit, but not severe enough to stop me.  So far, I have not missed a day of work, except for infusions and scan days.   Everyone's mileage varies how it hits them, I have been very fortunate that, so far, it has not clipped my wings.    But, again, everyone is different, and if you need rest, that is far more important.  really.  

     

    one of our LLS board angels, KCPenne has suggested probiotics.  I have finally taken her suggestion.   My biggest issue this whole thing has been with gut and digestion.    I found out the hard way that I will never need to take Senna, but some do need to.   Again, Onco will rule, the Onco is the expert.

     

    Stand by for feeling wobbly, tired, not-motivated and sometimes just kinda sick.   Take the nausea meds they will give you.  they really make a difference.  Post first infusion, the suggestion to drink lots of water is the best advice ever.  You will have tumor die back, and all that debris, the faster you can get it out of you the better you will feel.  Ask your oncology team for instructions about diet during this time.   Your potassium and a couple other mineral balances can go really wonky.  I was told to avoid eating anything I did not prepare myself, and to wash all veg, and post first infusion to stay away from fresh raw veg (cooked are fine).  It had to do with uric acid levels and potassium and the chance of picking up an infection from produce or a  food handler at a restaurant.   Again your Oncology team will have information for you about that.   I've found that while I still avoid raw produce, once in awhile a salad screams my name, so I wash wash wash the fixings and salad spinner them and so far so good. 

     

    and the dear PredniZone.  There are some threads on the board about it.  It is unavoidable, it is so necessary and it can be simply wrenching.   Again, I've been fortunate that it does not hit me like it did the only other time I took it for a back injury.  Then I was happy and all for three days, and following that, I wanted to kill anything that looked at me.    During R-CHOP, it doesn't do that, even tho it is 100mg a day I am taking all at once.   I take it as early as I can in the morning so it is out of my system by bed time.  sleep becomes so important.  If you have any blood glucose issues, let your Onco know, as Preds will skyrocket your blood glucose.   I found my old nemisis Metformin, which always gave me gut issues, well, it will not control the glucose rise the Preds cause in MY system and it leads to some intractable gut issues.    sigh.  probably my worst symptom of all with R-CHOP.

     

    Ah, and after a rant I made at my Oncologist about chemobrain (I had just called him "Ma'am by accident, chemobrained me)....I asked him if anything else was gonna happen...and in full dead-pan he said "your hair is going to fall out..."     argh!!!  yes, yes it does.     I did not shave my head, too public a ceremony, hence the Gollum avatar, I have similar hairdoo these days.

     

    but anyway, be of good cheer.  You have found a great place to come and talk, ask questions, vent, share joy,  we are here for you.

     

    mcee

  • 6. Re: Got room for another newbie?
    porciniak Registered Users
    Currently Being Moderated

    Welcome and so sorry you've reason to find us,

     

    Fortunately, this is a place to come for good advice and comfort from the 'been there' crowd.  Those currently in the struggle are so much more able to help out than I, so I'll keep this very short, only wanting you to know that there are many of us in the wings to lend an ear plus advice.

     

    When I was dx'ed in '98 I went it alone, no internet support that is, and I had to laugh at anothers  'chemo brain' remark.  Can remember very clearly describing my 'brain' symptoms to the seasoned study co-ordinator who replied that she hadn't heard of those before, lol.  It was months and months before I found that it's really quite common, but does recede with time.

     

    <<hugs>> dj

  • 7. Re: Got room for another newbie?
    NewJez Registered Users
    Currently Being Moderated

    Hello Cindy - after cancer I don't go anywhere now without a good book. You spend a lot of time waiting.

     

    My diagnosis was similar to yours, I'm 3.5 years in remission now.

     

    I won't give you tips as the treatment is all a bit foggy now - and there are people closer to the action who can advise you better than me. But just remember - there is a light at the end of the tunnel.

  • 8. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Thanks everyone for all the helpful hints and advice!  Sounds like I need to pack myself a little goodie bag to help pass the time during Chemo.  My husband did find out that they do have wifi, so he'll be able to log on and work from there.  His work has been great, giving him time off to go to my appointments with me.

     

    Today I had an appointment with the surgeon that is suppose to insert my port on Friday morning.  It was a bit discouraging - I am on blood thinners because back in 2007 I had blood clots in my left arm and neck area.  I have been off my blood thinners since Sunday night, but my blood is still too thin.  I have to go back early Friday and have my levels checked again, but if my numbers are still too high they may have to delay putting the port in until next week.  I'm scheduled to start Chemo on Tuesday so hopefully this all works out.

     

    Cindy

  • 9. Re: Got room for another newbie?
    jgold Registered Users
    Currently Being Moderated

    Have a little faith, it will all work out...... JUST maintain a positive attitude......a visualize yourself healthy.

     

    Jim

  • 10. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Jim,

     

    Thanks for the encouragement to stay positive - normally (pre-cancer diaganosis) I was a very optomistic person.  Its just this whole process has been hurry up and wait and that has made me a bit crazy at times. I admit waiting is not my strong point!  I just want to get started.  Initially my CT guided biopsy was delayed 2 days because the doctor called in sick.  Then I had to reschedule with my oncologist because the pathologist sent my biopsy for a peer review. Then there were a few delays while the referrals were being handled by the insurance.  I know in 6-8 months, looking back, these delays will seem minor, but its so easy to get caught up in the moment and have a mini pity party!

        

    In a couple of hours I'll be heading off to the lab to see if my INR has dropped to 1.5 or below so I can have my port put in. I guess the issue is in the outpatient surgery clinic there is no blood or critical care aavailable if something should go wrong.  My surgeon assured me that we can move the procedure to the hospital where those things are available if my numbers are still too high.  He said what shoud have been a simple procedure has been complicated by my blood clotting issues and high INR.  He said we could do it either tonight or Monday morning at the hospital so I should be good to go on Tuesday morning for Chemo.

     

    Yesterday was my Chemo education class - so much information!  My husband went with me so between the two of us hopefully we can figure all this out.  They also offer a couple of other classes that she suggested I take.  One was called "Seven levels of healing".  She said that one would be great for anyone with stress in their life.  The other is a luncheon and make-up class.  She said its fun and I'd get to meet ladies going through the same thing I am.  Also the next one will be about the time my hair is falling out, so she said it's good to boost the spirit plus you get $100 worth of free make-up.

     

    Cindy

  • 11. Re: Got room for another newbie?
    jgold Registered Users
    Currently Being Moderated

    Cindy:

     

    I know it is easier said than done, but apart of a positive frame of mind... have a little fun with the changes you will experiment...  like hair loss.... (remember you will get the hair back.. different but back).  My wife made a whole production of the day I actually shaved it off.. it was falling out and I went to the barbershop and had it removed.. well she took pictures , had me pose with the ladies that cur it off.. and all I could do is laugh.  Later that week I had to shave the mustach as I was starting to eat it, and I must say that that was one dish I did not enjoy.  Right now the hair is coming back and my mustach is showing sings of rivival... looks like dirt on the top of my lip, but I like it...

     

    One thing though.. please support your partner, they are going through a lot of turmoil and are scared (eventhough they will not exppress it), the more positive you are and the more you embraze a normal daily routine the easier it will be on them. My wife is not suffering the physical issues but she is suffering the emotional ones (even more than I am).

     

    One other thing, I have said this before and will say it again and again... you have stumbled on one more bump in the road of life, it is only that, you find a awy around it, over it, and just continue your life's trip.  Realizing that the diagnosis and treatment has givien you a new lease on life for as long as it is, enjoy each and every day and forget about the past.  Look towards the future as something new and wonderful.  You have a lot to live for, you have yourself, your family and many that count on you.... so live to the fullest.

     

    Jim

  • 12. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Jim,

     

    Well my INR was still too high this morning to have my port put in - it is coming down but not quite fast enoungh.  My schedule will be thrown off a bit because of it.  Now we are looking at Wednesday to have the port put in with Chemo starting on Thursday or Friday.

     

    I can so relate to what you say about the emotional stress this puts on our spouses.  My husband is pretty quiet and holds a lot in.  Sometimes he just looks so sad.  He says he just hates to see me feel bad and not be able to do anything to help me - I guess it's a guy thing to want to "fix it".  At first when I got my diagnosis he would hug me and say, "You're going to beat this!"  Over the weeks he's changed it to,"You better beat this!"  It's a subtle change and to be honest I don't even think he realizes that he's done it.

     

    We have teased a lot about the hair thing.  I haven't decided yet if I'll do the wig thing or just go with hats/scarves.  He tells me I should try going blond to see if they really have more fun!

     

    We have an RV and enjoy camping so we are hoping to be able to do that when spring comes.  You are so right - we do have so much to live for!  If anything our diagnosis makes us appreciate what we do have where we may have taken them for granted in the past.  Our youngest daughter and her son live with us.  At his young age (7) of course he doesn't understand whats going on.  His mom has told him that Ma-Ma's hair will be falling out (since that will be the visable sign he'll see) he checks every day to see if its coming out yet because he thinks my hair is making me sick and when its gone I'll be better.  He also asked his mom if he can be bald like Ma-Ma, too!  Kids are so funny!!

     

    Again, thanks for all your encouragement!

     

    Cindy

  • 13. Re: Got room for another newbie?
    jgold Registered Users
    Currently Being Moderated

    Cindy:

     

    Many family members shave their heads to support their love ones.. (hint hint hint)........  BTW bald look is great.... my wife loves it... but hair is coming back

     

    Jim

  • 14. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Good morning everyone - and I mean early morning (4 am).  Can't believe my big day - First Round of Chemo - is finally here!!  Been up for half an hour reading old posts, just unable to sleep.  Can't wait to get started - only 5 1/2 hrs to go!

     

    Cindy

1 2 3 24 Previous Next

More Like This

  • Retrieving data ...