Day 5 and I'm on my way (SCT)

[bailie]

Day 70 and the first indication of GVHD. It does not seem to be a problem so far. I have some skin reddening on arms and legs and a little on back. So I am waiting to see if it will get worse or better withe the steroid ointment (Triamcinolone Acetonide). Other than that I feel fine. Walking a fast two miles a day comfortably. Weight (190) has stayed exactly the same since September 1st.

I still think daily about the others on the forum and wish the very best.

[DanL]

Sounds like you are doing quite well Bailie. Congratulations and continued good healing! Based on my last several months, you definitely want to keep on top of any of the GVHD issues as they sometimes start off mildly and then take off.

[bailie]

Thank you Dan. The tough part of much of this is that (as we all know) there just doesn't seem to be a reason for what happens and when it happens. Every conversation with the doctors and nurses seems to come to the same conclusion.

I am wondering if I will have allergies that I didn't have prior to transplant?

[DanL]

I can't answer the allergy question for you, but I have had minor seasonal allergies and had to take zyrtec for a few weeks during the spring and summer. So far no real food allergies. I still have some sensitivity to milk though, which I had prior to transplant.

[bailie]

Day +150 and feeling reasonably well. About Day +70 to Day +95 I had a very manageable skin GVHD. It was a rash that moved from arms to legs to back. It only lasted about a week in each area and cleared quickly when I used Triamcinolone 0.1% cream. The rash was not a problem and barely noticeable. Drs. were happy about the ease of getting rid of it.

At Day +130 I developed a dry cough and fever that topped out at 99.7 degrees (my temperature baseline is 97.5). It seemed encouraging that my WBCs and neutrophils jumped up at the same time as my increased temperature to 12.3 and 10.4 respectively. I felt weak. After two days my temperature dropped back down to 97.5 and has remained there since. The dry cough in morning still remains. We are still checking regularly with CTs and lung X-rays to decide if this was/is a temporary situation or perhaps GVHD.

Those are the only negatives I have had. I am still power walking a mile each day when the weather is reasonable. Appetite is good and digestive system functioning well. Naturally, I am always waiting for something. That just seems to be the personality of MDS.

[Susan]

You sound like you're doing very well. I'm glad the fever is gone. I've read that activity/walking is a good immune booster. Yay for the whites jumping up.

[joesmith]

Originally Posted by bailie

Day +150 and feeling reasonably well. About Day +70 to Day +95 I had a very manageable skin GVHD. It was a rash that moved from arms to legs to back. It only lasted about a week in each area and cleared quickly when I used Triamcinolone 0.1% cream. The rash was not a problem and barely noticeable. Drs. were happy about the ease of getting rid of it.

At Day +130 I developed a dry cough and fever that topped out at 99.7 degrees (my temperature baseline is 97.5). It seemed encouraging that my WBCs and neutrophils jumped up at the same time as my increased temperature to 12.3 and 10.4 respectively. I felt weak. After two days my temperature dropped back down to 97.5 and has remained there since. The dry cough in morning still remains. We are still checking regularly with CTs and lung X-rays to decide if this was/is a temporary situation or perhaps GVHD.

Those are the only negatives I have had. I am still power walking a mile each day when the weather is reasonable. Appetite is good and digestive system functioning well. Naturally, I am always waiting for something. That just seems to be the personality of MDS.

Hey Ballie - great progress and attitude all way round! My prayers are with you.

[mausmish]

Sounds like you're doing great! So glad to hear this.

[bailie]

Karen,
It seems I remember that you started Vidaza after your transplant. What was the reason? Did your mutations come back? Or, was it a preventative measure?

[mausmish]

The Vidaza was for a preventative measure. It is theorized but unproven that it helps boost the new immune system. I was slated for 12 months but completed only 10 because my doctor feared it might exacerbate my mild chronic GVHD. So far so good - I'm 4 years post transplant with everything in normal range.

[Peachy]

Hello Ballie - I have not been on the site for several months, as we are more AML than MDS now. Once on I looked for you to see how you were doing. I am so happy to hear that you are doing well even though experiencing some challenges. Good for you!

[bailie]

Thank you Peachy. I am at Day +165 and feeling great. The "setbacks" have been very minimal. I am very appreciative and have somewhat of a guilty feeling. These diseases seem so individual and that is what seems disappointing. So many unanswered questions. "why do some people respond to Vidaza" etc.? The variance of responses seems so unfair. Naturally, I am at a very early stage of recovery and things, as all of us know, can change quickly. So I am just very much appreciating every day and doing everything in my power to positively influence what I can control.

I continue to wish for the best in your situation. I have missed your comments. The more we know about each other's condition is very helpful. I know I have learned so much constructive knowledge from all of you.

[Peachy]

You are too kind and you have nothing to feel guilty about. I am thrilled you are doing so well. I will be starting a new post as we find ourselves now on the track for recurring AML, but not there yet. I have missed being on the site, but life gets in the way sometimes, but I'm glad to be back!

[Cheryl C]

Yes Baillie - enjoy your success! You deserve a big pat on the back for your positive mental attitude.

[bailie]

Day 215 and I am feeling fine. I have had only minor (skin rash) GVHD to this point. It now seems like "the other shoe has dropped". The significant problem is that I got a call from my transplant doctor last night. She let me know that they found increased blasts in my blood from a test last week. I realize this is bad news. I will have a BMB Tuesday to further analyze the problem. We discussed Vidaza and 30 day chemotherapy program at the hospital. Any suggestions/ information would be greatly appreciated.
Thank you.

[rar]

I hope that it isn't that bad. You might want to investigate these. Where possible, patients are given a donor lymphocyte infusion (DLI) with or without chemotherapy, and some are offered a second SCT.

Ray

[bailie]

Ray, I am hoping that the increase in immature granulocytes has been caused by the prednisone that I have been on and now tapering, or caused by the infection associated with the prednisone use. I guess I'll find out when I get the BMB on Tuesday. It won't be good if caused by relapse.
Thank you.

[Cheryl C]

I'm concerned for you, Bailie, and wish you all the very best with the BMB. Your positive attitude has helped you through so much already. Hopefully this is a momentary set-back associated with the prednisone.

[JordanN]

Hi, Bailie!

Just wanted to let you know that I'm wishing you all the best and hoping that your BMB shows no relapse! Keeping my fingers crossed that the blasts are due to the prednisone! You've been through so much, and I know you'll face whatever comes with the same great attitude you've shown us all along!

[bailie]

Thank you Jordan, we have all learned so much about something we never planned. I am hoping that the immature granulocytes are from the bold below rather than a relapse. I had corresponding steroid use (prednisone) with an infection and a surgery during this time of the increased immature granulocytes. We'll see with the BMB.

"Increased immature granulocytes occur accompanied by an increase in neutrophils in the following conditions:"

Bacterial infections
Acute inflammatory diseases
Cancer (particularly with marrow metastasis)
Tissue necrosis
Acute transplant rejection
Surgical and orthopedic trauma
Myeloproliferative diseases
Steroid use

[DanL]

bailie, being on prednisone, it is too early to know what is going on. blasts in the blood are generally not good, but prednisone is a beast on the blood production. good luck with the biopsy and subsequent results. at this moment, e pray for the best and prepare for next steps if needed. as you know, i learned in August that i had signs and symptoms of relapse that were confirmed in biopsy. i have gone through six cycles of vidaza without dli and have been fortunate enough to have two consecutive cost biopsies since, so even when the news isn't perfect, we have options and hope

i pray that this is a false alarm, but also know that you have the courage and strength to persevere.

dan

[bailie]

Thanks Dan, I guess my next big decision will most likely be the 30-day Chemo program at the hospital or Vidaza. I have been trying to find information to help me with the decision, but haven't found anything. Dr. will decide, but any input I can give will help. I did tolerate Vidaza well and it worked for me after the first cycle before SCT. My blood numbers are all good (platlets @ 186, WBC @ 10.7, RBC @3.45) at this time, so that helps.

All of this speculation still greatly depends on the BMB on Tuesday. This sure caught me by surprise, but that is "par for the course" with this disease.

Dan, I continue to wish you the best. It is tough when a person tries to do the right thing, make good decisions and still have roadblocks thrown at them.

[SLB]

Wishing you all the best and hoping you get your results soon. My fingers are crossed for you!

[PaulS]

Sorry you have to through this - hopefully its just a blip and the bone marrow will be OK - Either way MDS sucks. Good luck. Paul

[Hopeful]

Hi Bailie,

I am no expert on the transplant side of things, but I do remember hearing/reading a lot of recent research on using Vidaza post-transplant to ward off relapse. Unfortunately, because of the reorganization of the AA&MDIF online video library, I have no idea where the video is that referenced this. I did find a few recent papers though that may interest you. I will also keep looking for the video!

https://ash.confex.com/ash/2014/webp...aper69150.html

http://www.bloodjournal.org/content/...o-checked=true

http://www.bloodjournal.org/content/...o-checked=true

http://www.ncbi.nlm.nih.gov/pubmed/20672358


Hope your BMB results are good!