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-   -   My journey has begun (http://forums.marrowforums.org/showthread.php?t=5365)

Data Mon Apr 4, 2016 05:21 PM

My journey has begun
 
Well I was admitted on 29 March, 2016. I had 5 days of Cytarabine (AKA ARA-C) (100 mg/m2) and one day of Cytoxan (4,060 mg over 2 hours) (AKA Cyclophosphamide) and one more day to go (starts tonight at 6:00 PM). So far my side effects have been minimal. I had a little dizziness when they started the Cytoxan but that went away. Tuesday, the 5th, will be a day of detox to let all the chemo clear out of my body and then on Wednesday, the 6th, I have one fraction of TBI (5.5 Gray) and the stem cell infusion. My donor is a 21 year old male with blood type O-Negative (I am O-Positive). The Rh factor isn’t a concern and I have been told it may not even change my factor. The only thing they don’t do well here is dietary. I would suggest the cooks go work for an Army unit somewhere, preferable one of our enemies’ Army. The Doctors, Physician Assistants, Nurse Practitioners, Nurses, Patient Care Associates, and other hospital staff have all done an amazing job in my opinion. The Doctors, Physician Assistants, Nurse Practitioners, and Nurses have all cautioned me that thing are not likely to continue so well after the infusion is done and GVHD rears its ugly head. I did bring my laptop and some reading material so I have been able to stay busy for the most part. Time marches on. . .

Annettec Mon Apr 4, 2016 06:53 PM

Sending positive vibes your way. You will be in our prayers.
Keep us posted,
Take care
Annette

Bear2345 Mon Apr 4, 2016 07:35 PM

Hi!
 
Thanks for the link. I joined and am figuring it out! Hang in there!

bailie Mon Apr 4, 2016 07:38 PM

Interesting Data. You seem to be doing much better than I was at that stage. I am sure every place is different. My food was very good but I had no appetite for food nor water until about Day +15 and then I was very selective. It was mostly tomato soup. I tried anything I thought might work, but usually came back to the soup.

My donor (20 year old from Germany) was O positive. I was A positive. Now I am O positive.

I was fortunate and had very little GVHD. You never know, you might not have any problems.

rar Mon Apr 4, 2016 09:13 PM

Hi Data,

I wish you the best of luck. Trying not to be a party pooper in my case everything went went well for the first 3 months. For the transplant I was in the hospital for just a week. I was able to eat the food, nothing spectacular but a notch above Army food. Then GVHD reared her ugly head. For 2 months in the hospital I never ate anything. You will be among the lucky 50% who don't have GVHD.

Ray

Cheryl C Tue Apr 5, 2016 05:47 AM

All the very best, Data! You are in my thoughts and prayers. Keep posting...

PaulS Wed Apr 6, 2016 08:11 AM

Great to see your post and glad you're doing well so far - You may feel worse in a few days - but that should pass - try and keep moving and eating - there's always Rice Krispees. They should be giving you medicines to help prevent/minimize GVHD - so I am hoping you will be pleasantly surprised on that front. Be really careful about infections - take showers, make sure the nurses are diligent in cleanliness habits, especially when changing the dressing for your catheter - and sanitize all the surfaces in your room often - especially door knobs, table tops etc. I found cleaning a helpful ritual. Music was also helpful. Keep it boring!

Best wishes,
Paul

Data Thu Apr 7, 2016 11:56 AM

Chapter 2
 
The last chemo (Cytoxan) finished on Monday and I had the TBI Wednesday as well as the transplant. Everything was pretty much a non-event. The TBI was a little uncomfortable because they taped you in this seat that looked like a bicycle seat and you had to be very still. It didnít cause any discomfort other than that. I have had a little nausea and diarrhea and the docs and PAs say that will get worse before it gets better. I love good news. My counts are heading south as expected. I received platelets last night and by the way my hemoglobin and hematocrit are going I will likely get blood tonight. So far it has been largely uneventful. I hope that keeps up. My nurse that was on duty during my transplant gave me a bag of goodies (candy etc.) for my new birthday present. The staff is definitely top notch!!!

Data Fri Apr 29, 2016 08:19 PM

Update
 
I was discharged from the hospital on 26 April 2016. That was exactly four weeks after being admitted. Things have gone very well from what I can see. My blood counts continue to rise although the RBC is lagging a little. My ANC is 5.14, Platelets are 192, WBC is 7.7. My only complaint is I am very tired but all the docs and staff say that is normal.

We are staying in the Hope Lodge which is great.

Data

bailie Fri Apr 29, 2016 09:05 PM

We have been waiting to hear from you. I think "being tired" comes with the territory. I noticed little changes week by week for getting back some stamina. This is when the patience is so important. Your numbers are excellent. Have they talked about a BMB yet? I think most people get them at Day +60. I had mine at Day+30.

DanL Sat Apr 30, 2016 01:36 AM

Data,

Great results at one month. It took me just under 2 years to get numbers like that! I do hope that your recovery continues to progress as it has so far.

dan

PaulS Wed May 4, 2016 07:15 AM

Hi Data - glad you are out of the hospital - those numbers are terrific! Fatigue is very normal at this stage - but those numbers, I think are way ahead of the curve! Make sure you stay very careful about cleanliness and avoiding infections. Do you still have a central line?

Stay well and keep it boring!
Best
Paul

Data Wed May 4, 2016 02:50 PM

Update
 
No mention of a biopsy yet. I still have my Central Venous Catheter (CVC). I love that for labs. They are good about changing the dressing. So far I have been seen in Clinic one a week. The doc said I am doing better that some of his younger patients. I have my fingers crossed hoping that continues. I am walking about 1.5 miles a day (spaced out over three walks). I also bought some weights to help my leg muscles and arm muscles in shape.

Cheers

David

bailie Wed May 4, 2016 04:35 PM

Sounds great!! It is always a good feeling when the doctors throw a positive comment your way.

Data Sat May 7, 2016 03:57 PM

Developed a Rash
 
I have developed a rash that covers my stomach and chest area. It is not a itchy - just a very noticeable pink rash. When I was an inpatient they gave me some cream (Hydrocerin Moisturizing Cream for Dry Skin). It hasn't done anything to help. I have a Clinic appointment on Tuesday and plan to ask the doc about it then. I was just wondering if anyone has experienced anything similar. I suspect it is just a mild case of GVHD attacking my skin. Any thoughts???

Data

bailie Sat May 7, 2016 05:10 PM

Yes, I have experienced exactly as you describe. I was prescribed Triamcinolone Acetonide Cream USP, 0.1% (it is a steroid) and I got the 1 lb. tub of it. It worked very well. That rash was my only experience with GVHD. It went away when using the cream. The interesting thing about it was that I would get the rash on both arms, or both legs, or both shoulders. It was always both. Then on my back or chest. Never any itch and the cream would start working immediately and might take a week to subside. It never got bad enough that it was any kind of a problem. The experience probably lasted about a month total.

Data Sun May 8, 2016 11:50 AM

Backk in the hospital
 
The rash got exponentially worse in size and intensity so I came into the clinic this morning. They called in one of the docs and he confirmed it was GVHD. They admitted me so they could put me on IV steroids. Don't know how long it will take to get it under control. Soon I hope.

Data

Neil Cuadra Sun May 8, 2016 12:30 PM

Data,

I'm sorry to hear about the rash. Does it hurt or itch, or just "look funny"?

Data Sun May 8, 2016 12:38 PM

Neil,
Doesn't itch except on my face. They are going to double my oral prednisone plus give an IV of it. Looks really weird.

Data

bailie Sun May 8, 2016 02:54 PM

So interesting. Now that I think about it, my face and scalp itched but there wasn't the associated rash.

rar Sun May 8, 2016 04:22 PM

10 months ago, 1 year after transplant I came down with GVHD of eyes, mouth and skin. I was rated as moderate. Skin had red rash over entire body. It hurt and itched at the same time. It was gone in a couple weeks. Scars on my chest and some scaly spots on my back are still present. Mouth and eyes still being treated. I was treated with 120 mg. prednisone that was tapered down to 5 mg. that I am still on. I will send you a picture of what moderate rash looks like.

Ray

PaulS Sun May 8, 2016 08:34 PM

Hi Data - sorry the GVHD got worse - but I'm glad you're in the hospital and they're taking care of it. I responded pretty quickly to steroids - but reached a stand off where the GVHD was all over my skin, I think Grade III - somewhat red and itchy - but didn't attack other organs or blister. My counts went down and stayed down until they gave me Rituxin - which worked great - now I'm still on prednisone but tapering - finally off MMF. Also on tachrolimus and probably will be for a while. (prophylactic anti-everything too) The GVHD is mostly gone except my face gets red and a little itchy sometimes - I have little freckles on my arms and legs, but they are fading away I think. Otherwise I feel very well and my counts are getting close to normal or normal - It was a bit of a bumpy ride for me - but not too bad in retrospect. It its good they are on top of it. As I said - a little GVHD can also be a good thing

Best wishes,

Paul

Data Thu May 12, 2016 09:27 PM

Update
 
Well, I am still in the hospital. They have me on IV Steroids (Solumedrol), cyclosporine, and Triamcinolone Acetonide Cream (0.1%). Nothing seems to be working as the rash has actually spread to my legs to a minor degree. The rash on my chest and back doesn't seem to be quite as intense as when I was admitted but still very noticeable. It is starting to itch just slightly.

Another problem cropped up. I turned up positive for CMV. They are treating that concurrently.

Cheers


Data

PaulS Fri May 13, 2016 07:16 PM

Hi Data - Sorry your still having a hard time - is the rash very uncomfortable? Any symptoms from the virus - any other organs affected by the GVHD - mouth, digestive system etc -- are you eating OK? Able to walk around the halls? Are you counts still doing OK - my platelets went down from the GVHD and took quite a while to go back up - and only after Ritixun -

Sounds like they're on top of things and treating the problems aggressively - which is good. My doctor would tell me I'd just have to ride out the GVHD storm - that it could take a while - ok I'm paraphrasing a little, he said it much better but i liked the storm metaphor.

When I first had GVHD - skin only but pretty extensive - they gave me a high dose of oral prednisone - that I'm still tapering - Initially IV prednisone at the day clinic - which reduced some very uncomfortable itching. Eventually Ritixun - Also MMF (finally off) and Tacrolimus - still on. Also Fluocinonide cream (.05%) - they told me to use it very liberally - and they preferred to treat reaches topically to the extent possible. Interesting how centers - and even doctors within the same center will treat similar things a little differently.

It all took a while - and I'm not done fighting it yet - but its pretty much under control and I'm optimistic I will be off everything eventually. Learning patience was a big part of the transplant process.

Hope things start getting better soon.

Paul

Data Sat May 14, 2016 11:54 AM

No improvement but I am out of the hospital
 
The IV steroids didn't seem to make a dent in the rash and actually it spread a little while I was in the hospital. I guess the doc assumed he could treat me in clinic just as easily in the hospital so he discharged me on Friday. Didn't break my heart. The rash is starting to be annoying. It is itching a little (not uncontrollably). Also when I took a shower the other day and used one of the patches to keep my catheter dry. When I took took the patch off it pulled some of the rash with it. Not nice!

I am on 70 MG of prednisone twice a day plus I am on 25 MG of cyclosporine twice a day. Hope something kicks in soon.

The CMV virus doesn't seem to be bothering me. They started me on Vaiganciclovir (commonly known as Valcyte) 900 MG twice a day and it did drop the CMV slightly.

Cheers

Data


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