MDS-from diagnose to transplant in 9months.

[lisa3112]

Sorry my spelling is horrible typing on a phone! Folliculitis!

[Meri T.]

Thank you Dan and Lisa. I was on Ursodiol a few months back. Then was taken off it.
The steroid prednisolone is working, and my liver numbers have slightly decreased, so I will be kept on steroids. However, since steroids can cause osteoroposis (spelling?) and diabetes, I am now taking medicine for bones and diabetes. I think you all know how this works, meds for side effects caused by other meds... and in the end you get a stomache full of pills after breakfast .

According to my hematologist, I had GVHD liver since transplant, so even if I am now 6 months post STC, it is stilled considered acute, not chronic.

I had my 6 months post transplant health check. My skin has become itchy, so have been advised to use skin lotion twice a day, morning and evening.

Lisa, Folliculitis, yes, I have them on my face. They come and go. The steroids have turned me into a hairy gorilla, but I wear a mask in public, so it's not that noticeable.

According to my transplant team, they graduate the transplantees after 5 years. So I have 4,5 years to go. I always thought it was 3 years. I guess with this kind of cancer, they don't let you graduate early anymore.

Overall, I have bad days and good days. Bad days: I itch all over, I have nausea, a bloated abdomen, funny taste, and an upset stomach. It's a small discomfort compared to the fact I am alive. Thank you God.

Ultrasound of liver and kidneys were fine. The lung capacity test (?) where you have to suck in and blow out air, came out good too.

Blood counts 6 months post transplant, not so bad :
WBC 5.2
RBC 3.66 L
Hgb 11.7
Platelets 111 L

My next appointment will be in 2 weeks time. My doctor needs to adjust the meds, a difficult call. I trust him, and the team of doctors and nurses.

Christmas coming up with all those delicious meals (Cheryl and Lisa, I would love a meat pie!!) and yes, my delicate liver and stomache will bear the brunt. Will try to be strong and stick to fish and vegetables.

Sending lots of warm wishes and prayers to everyone out there.
Meri

[rar]

I have heard 1 3 and 5 years to fully recover. I am 3.5 years and still fighting GVHD.

I saw the following on the Leukemia & Lymphoma Society site - Typically, after a year or so, your body will form new T lymphocytes from the engrafted donor cells. The newly formed lymphocytes won't attack your cells, and immunosuppressive therapy can be stopped. Your immune system can work efficiently to protect against infections, and your risk of infection begins to approach that of a healthy person. This "state of tolerance" between the donor immune cells and your cells is important for long-term transplant success.

I wish there were a way to speed the new T cells up.

[Meri T.]

Ray,
Thank you for enlightening me on why they have those 1,3, and 5 year timelines. My hematologist stated that half the transplantees passed away within 3 years post transplant due to infection or GVHD complications.
The other half continued on, and 20% more dropped out in the next 2 years.

Lisa,
I use a very soft face and body soap, MUO by Kracie. The hospital prescribes HEPARINOID (HEPARIN) cream lotion and spray 0.3% for itchy skin. Works wonders.

My friend who went through chemo for breast cancer also had raised bumps on her scalp, so I think my bumps are not only GVHD related.

I just love gardening, my only vice. The nurses advised me against it, they even told me to call Gardeners to clear out all my potted plants!! but said if I HAD to do it, then wear gloves, a disposable mask, goggles if I can, a hat, cover myself with long sleeves. After gardening to dispose of mask, wash up, disinfect and change clothes.

Meri

[DanL]

Meri,

Unfortunately the information on long-term survival is somewhat difficult to get by year after transplant. The biggest study that I found started at 2 years post-transplant, as disease relapse, GVHD, and infection were the biggest causes of death during the first 2 years.

At the 2 year mark, 80% of patients would go on to survive 10 or more years.
Between years 2 and 5, 40% of those died, died of disease relapse, while the others had complications of cGVHD, secondary cancers, infections, organ failure. After 5 years, death from relapse becomes pretty rare, although it may occur, so you are left with infections, cGVHD, and secondary cancers in the later years.

Most of the prior research that I had seen really focused on 1 and 2 years because most institutions only publish 1 year survival rates, and probably because if you get past the second year, your odds of long-term survival go way up. After looking further, that 5 year number would really seem to suggest that you are not likely to relapse after 5 years.

Like Ray, I am getting close to 4 years post transplant and still have some cGVHD issues that I am dealing with, so my new immune system hasn't quite settled in to its new home all the way. Fortunately I am not on a lot of immune suppression, and have managed to escape the infections issues thanks to my team of doctors - I have now survived sepsis 3 times, pneumonia 1 time, cellulitis for about 6 months, and both c-diff and vre, and bk, etc. Most of this was in the first 2 years, year 3 was good, year four has had some hiccups.

It can be a long path, but one that is worth it.

[rar]

Hi Dan,

Since you have been fighting cGVHD longer than me maybe you can offer some advice. My long standing symptoms include adrenal failure, severe dry eye, skin cancer, dry mouth, dizziness, high and low blood pressure, etc.

I am taking 1 mg. tacrolimus for immunosuppression, 7.5 mg prednisone for adrenal replacement, and 5 mg midodrine to tame wild blood pressure with mixed results.

Any idea of any drugs that would speed up a new immune system or would help with symptoms? Would more immunosuppression knock down the cGVHD? My doctor says that I am a poster child for transplant survivors. I am happy with the results but I am having trouble seeing the light at the end of the tunnel.

Ray

[DanL]

Ray,

I think it is all a living, changing experiment to try and get it all right. I have been able to wean myself off of the hydrocortisone and don't take any currently. I was a little bit more proactive than the doctors on this one. I figured that as long as it did not cause major issues with bp, balance, or weight loss/gain that it would be alright. I have not been tested, but I believe that I am in good shape. The one thing that I still use is a testosterone patch about 1 day per week as it seems to help energy levels.

I have had GVHD of the eyes and have just utilized the cyclosporine drops whenever i get a flareup.

I too am on tacrolimus 1mg twice per day - a pretty small dose overall - I have experimented with going down to .5mg twice a day, and even went to alternating days, but I always seem to get a pretty nasty bout of gut gvhd, which has been my nemesis. I am currently fighting a pretty bad bout of it and have added budesonide to my regimen. The positive is that it is not a systemic steroid, so it doesn't have the same adrenal and functioning effects - so you don't get moon face, nor diabetic blood sugar levels.

Skin cancer - yes, me too. I see the dermatologist every 3 months and have a tube of efudex - 5 fluorouracil (sp?) that I use on different sections of my arms, neck, and face every month alternating. I have my dermatologist freeze off almost anything that shows up on my head and arms when possible.

I think that photopheresis was doing some good, but my line kept getting infected, which was a more clear and present danger than the level 1-2 cGVHD.

My doctor is suggesting maybe switching to MMF or even trying ibrutinib which was recently approved for cGVHD, although the side effects profile looks pretty nasty to me.

instead of high blood pressure, i have been diagnosed with bradycardia, but that is kind of back to my normal state. It is not uncommon for me to have blood pressure of 90/55-60 at rest.

Aside from your eyes, where are you experiencing gvhd? for me it is grade 1 on the skin, grade 1 in the eyes, grade 1-2 in the gut, and otherwise good.

The quick answer to your question - yes, more immunosuppression could knock out your GVHD. The difficulty in doing so means that you have greater risk of infection, you have greater risk of additional secondary cancers, and you could present a challenge to your new immune system that could cause late rejection. I imagine that last one is only under severe immune suppression.

Some of the treatments for GVHD are a little more localized which tend to limit risk to you, which is why I ask where your GVHD is.

[rar]

Hi Meri,

I hope that I am not hijacking your thread. You might find GVHD discussion entertaining and I hope you don't need the info.

Dan,

I will start at the beginning. Feb 2014 I was told that I had MDS so mild I would never need treatment. Apr 2014 a BMB showed MDS RAEB 2, very high risk. I was told I needed a SCT ASAP. All my living siblings were tested. My three brothers matched each other but not me. My three sisters matched me. I had a SCT July 2014. All went well, I regained my strength and endurance. Oct 2014 I went to ER with a fever. I had CMV, C.Diff and GVHD of the gut stage 3/4. I spent 2 months in the hospital. They told my wife I would probably die, they didn't tell me so I didn't. I didn't eat or drink the whole time in the hospital and didn't eat anything after leaving the hospital for the next two months. I recovered. Jul 2015 I was told that I was well en-graphed and the GVHD was gone and I should stop all my drugs. A week later I was covered head to toe in a bright red rash along with typical GVHD symptoms. I was given increasing large doses of prednisone. They stopped at 120 mg. I got somewhat better but the cGVHD persists to this day.

My doctor told me he could kill me with a relapse or with GVHD and there is a fine line between them and he didn't know where that line is and we had to find it with trail and error. Being an oncologist he prefers me to have some GVHD because of graft versus tumor effect. We might disagree on the degree of GVHD that is desirable. He says I will be on tac and pred lifetime. I hope that is a long time.

The problems I am still having is blood pressure with systolic ranging from 65 to 210. My cardiologist says he is not worried. I have a good heart and will die from something else. The change in BP caused me to almost faint and generally feel crummy. More recently the dizziness has becoming a feeling of being drugged along with the eyes not wanting to focus and fatigue and tiredness and half asleep. It is worse from about ten in the morning to mid afternoon or sometimes to bed time. Early morning I feel fine. A few times the vision got to the point all I could see was white fog that pretty much blinded me. It went away in an hour or so. This dizziness is probably my worst problem because there is not much I can do when it happens. Skin cancer is tolerable. I see the dermatologist quarterly. He will find 30 to 50 spots that need freezing per visit. He also found 4 cancers that needed surgery. For the eyes I tried restisis and xiidra. With both of them the cure is worse than the disease. I usually use eye lubrication. When they hurt bad I use muro, a 5% salt solution. From age 23 to 73 I had about 5 cavities. In the last three years I had a dozen. They were large, below the gum line, between teeth, and difficult to fill. I was lucky to find an old dentist who could fill them. All the young ones who I consulted wanted to pull them.

Those are the worse conditions, not too bad overall. the dizziness is the worst. In addition I have dry mouth, sore throat, big purple spots on the arms, a failed adrenal gland, and bleeding on the arms and legs whenever I look cross-eyed at anything sharp.

I wish to thank you for your thoughtful reply. I know I am lucky to be alive and things could be much worse than they are. After 3.5 years it is starting to wear on me.

Ray

[Meri T.]

Ray and Dan,
This IS the thread I need right now, since I am living it. Thank you both for posting.
I can identify with all you are going through, but at a much lower intensity and shorter time-frame, since I am only 6 months post sct.

I agree with you both that GVHD management is trial and error. So frustrating, yes, but no post transplant symptoms are alike, maybe similar but not identical.

Eg. My liver flared up, but instead of increasing prednisone, my doctor lowered the dose, in hope that it was the drugs over-working the liver, even though he suspected GVHD!? I think they have to rule out everything before diagnosing GVHD. After 2 weeks of decreased prednisone, in which my liver numbers skyrocketed not to mention nausea, upset stomach and bloated abdomen, he finally decided GVHD and increased prednisone about 4-fold.

Skin cancer, yes. I will now be more attentive to my skin, especially applying skin lotion and skin cream prescribed. Now that's why the follow-up team of nurses were so insistent on showing me how to apply skin care. Dry skin "invites" GVHD in, so twice a day, they insisted, lather yourself from head to toe!

My transplant co-ordinator also advised me to continue the eye-drops, because eyes were very important. I understand where Ray is coming from when he talks about his eyes. Fortunately you are up in the clean air of Colorado, so I hope your environment helps. I am told not to venture outside on windy days, my eyes will be aggravated.

Before the transplant, my hematologist gave me a 60% survival rate within the first 3 years. He said it's normally 50%, but he gave me 10% more because I did not have any co-morbidities or gene anomalies.
After the transplant, when I came down with every GVHD and infection in the book, he said I had it worse than he had predicted, and that I should "complain" more about every little symptom so that they could manage my GVHD better. Funny choice of wording, but maybe he was referring to the patient being more "pro-active" as Dan stated above.

Everybody, keep posting. Sometimes a post can really help someone.
Meri

[DanL]

Ray and Meri,

The one thing that I keep reminding myself is that there is no such thing as normal, at least in the context of our past. I do not believe that I will ever be the same in terms of energy or relative inattention to illness or symptoms.

When I remember this, the medications, the flare-ups, the irritations become part of the new normal.

Meri, the complain more piece is important. I have become accustomed to some of my GVHD symptoms to the point that the doctor chastised me and said that my willingness to accept that level of discomfort was not acceptable, and probably not healthy. I also had a period of time where I was getting regular infections and just took it to be part of the learning curve of my new immune system - it was not - and i needed to be more cautious.

Moral of the story made short - normal is a relative term for each of us, whether we are healthy, pre-transplant, or post-transplant. Once we accept normal for each of us, then each day becomes the gift that it should be.

[Cheryl C]

Dan, RAR and Meri - I just want to say I really admire your courage and your endurance - I'm always interested to read your posts. You are inspiring!

[DanL]

[MDSAZWIFE]

This new journey has been a bit scary to say the least. My husband is recently 56 (although I told everyone he was 57). He is 6’6” and about 250lbs. He has always been very strong and a hard worker, so this laying around and being completely exhausted is not for him! It is so difficult to watch him losing weight, because he has no appetite. I would appreciate any advice on how to help him with his lack of interest in food. He has also developed a cough that doesn’t seem to want to go away, which exhausts him. His heart rate is already elevated, so he really could use reprieve!

We head to Mayo in Phoenix to talk to the transplant doctor. I pray every minute that he will be a candidate for the transplant, and that all will go well.

I am so grateful to see long term survivors posting their stories on here. It gives me hope, and makes me feel a little less scared and alone!

Praying in AZ

[Meri T.]

Dear AZWIFE,
My heart goes out to you and your husband. Diagnosed during Christmas season must have been hard to absorb. I am glad that you found this forum, there is so much to be gained by reading through the posts.

My husband is 56 too! But I'm the one that had MDS (I'm in remission now!). I was diagnosed last August - so last year I was where your husband is now. I can understand the anxiety he and you must be going through. You will get through this.

At that time, I didn't feel like eating either, so I mostly ate what I could, it didn't mean it was nutritious, but sometimes it was to get over the fatigue. That meant snacking instead of 3 hearty meals.

I do hope he gets over that cough. Cough drops? Ginger-honey tea?
Please keep us updated on Mayo and the transplant.

Take care,
Meri

[Meri T.]

Hello everyone,
I had my checkup the day before, the doctor didn't even mention how good the blood counts are:
WBC 6.6
RBC 3.91
Plts 127

Maybe he was more focussed on the post-transplant stage, managing GVHD symptoms and alleviating other "sufferings". He seemed more human this time. Must be the Christmas spirit.

My liver counts have gradually lightened up, so prednisone was decreased from 20mg to 15mg. Tapering very gradually.
I took insulin have constipation, so I was given magnesium and bruzenid(SP?) it's not working yet. I'm so bloated, I feel like fugu.

Any advice to beat this constipation???!!

I was also given eyedrops, 3 types: dry-eyes, anti-biotics and steroids. Lotions for the skin.
The transplant team said I was doing quite well for a 6 month post-transplantee.

My next check-up is Jan 4th !

Merry Christmas everyone. Keeping you all in my prayers.
Meri

[lisa3112]

Rar,
Did the cardiologist say any of the meds you are taking could affect your BP? Thats horrible you are getting dizzy, surely they can help in some way. Sounds like you have had it tough!

[lisa3112]

Meri! You sounds like you are doing so well!
I have been slightly unwell. Hurt my back and took voltarin, ehich caused gastritis! Lost 4 kgs in a week. Bloods arent too bad for me either.. Now 20months post SCT. Neuts are always between 1.2-2 so they want monthly bloods. My liver function also went a tiny bit off, but I think thats from vomiting so much!
As for constipation maybe try natural way first.. Prunes, fibre, etc. Movicol is also pretty gentle.
Hope you had a great xmas!

[Cheryl C]

Hi Meri - Nice to see your latest blood results. Well done!

You could try having chia seeds every day for constipation. It's best to soak them overnight. Carob powder in milk with a little honey is good too. Best wishes for continued improvement.

[Meri T.]

Happy New Year everyone, and best wishes for a healthy year.

4th January 2018, saw my appointment with the doctor go fairly well.
Trying to be humble, but showing off my blood counts anyway:
wbc: 6.7
rbc 4.25
hgb 13.4
plts 134

You should have seen my counts pre-transplant this time last year, to know how I feel now.

BUT, (of course there is always a "but" in MDS) even though my liver numbers are getting better, red spots on my foot, leg, are spreading up my thigh, is a warning sign that GVHD is still rampart, switching from liver to skin!

Besides Heparinoid 0.3% spray and cream, I got Locoid 0.1% steroid cream, it's a lighter version of Antebate 0.05% steroid. Locoid can be used on the face, though hoping these red spots will spare my moonface.

Cherl, Lisa ! Thank you for the wonderful suggestions on treating constipation. Besides taking Magnesium, I ate prunes, even made prune muffins. Then chia seeds ! It worked. I think the chia seeds worked a bit too well, though
My fugu stomache has miraculously eased, what a relief.

The doctor stated that long use prednisone could create unwanted Diabetes and Osteoporois (SP) :Since GVHD skin is still being treated, my doctor has decided not to taper Prednisone this time, keeping the same amount of steroids, so my drug list now includes ALENDRONATE (Fosamax) to prevent bone erosion. Equa tablets to control diabetes.
My prednisone at present is 15mg daily, cyclosporine 25mg daily.

All in all, it was a "Besides the GVHD skin problem, you're doing fine" appointment, just avoid molds and colds and the next blood check will be in 2 weeks time. Will update.

My prayers and wishes for everyone on this forum, or reading in, the warmest hopeful New Year ever.
Meri

[Cheryl C]

So glad you've had relief from the bloating and constipation. I love your numbers. Well done!!

[Meri T.]

Hello everyone,
Last Spring 2017, I flew non-stop Tokyo-San Francisco pre- transplant, low blood counts, especially my platelets were only in double digits. I needed platelet transfusions before and after the 2 week trip. Exhausting trip.

This time I will be flying post transplant. Same route - The flight is in March, so I'll be about 9 months post transplant by then.
With blood counts holding up, I hope to make it there and back in one piece.

These are my recent numbers as of Jan 18:
WBC 7.3
RBC 4.06
Hgb 13.1
Hct 40.5
Plts 118L
Not so bad, though wish those platelets could work up a bit more. Hate to see the Ls and Hs behind the numbers.

Though religiously applying cream lotions and steroids, GVHD Skin still not cooperating - itchy. Red spots have started crawling up from neck to cheek. Immigration might think I'm a walking pox-carrier!

My hematologist said flying with blood counts above would be no problem at all. For the skin rashes and spots, he says it will spread, but once they come out, it will not get worse?! In the meantime, He has cautiously decided not to taper my prednisone while the GVHD skin is still not under control. Meaning I catch only a few hours of sleep at night only, and am always ravenously hungry, and did I mention the itch which is always situated at the back improportion to the reach! ??

Funny thing about GVHD, sometimes when you think you've caught up with their game, they up the ante. It's like GVHD watch and wait.

Rant over. Now I am mentally preparing for a much needed Spring Vacation. Would love to hear from people who have had to fly after a bone/stem cell transplant. Please share your stories, thank you.

Meri

[rar]

Hi Meri,

I am 3.5 years into GVH. Last Friday I had an oncologist visit. He finally agreed that maybe we have to do something about the GVH. He will be looking into ibrutinib or jakafi.

I have a picture of what head to toe rash looks like. If you are interested I can private mail it to you. Is would be rated pg13.

For itch what I found that works is to run HOT shower water as hot as you can stand over the itchy area. When you stop it is itch free for several hours. I remember getting up a couple times a night to shower. The theory is the itching is caused by histamine receptors firing. The hot water confuses them and the all fire at once and there are none left to itch you. They recover and come back too haunt you.

Ray

[Meri T.]

Ray,

Yes, please private message the GVHD skin rash into my private mail, I believe it would be worth it.

I am also in the habit of taking shots of my rashes, raised spots, red spots in places where it's hard to see. I show the shots to my Doctor at every appoinment. For face, hands and even the back, he can see for himself.

The nurses have advised me against taking HOT showers, advised against using sponges too. It would only dry and scrape the skin more. Then apply lotion within 5 minutes after shower.

Tokyo had snow yesterday(!?), and today the sun came up, the glare hurt my eyes, so I think I need to be more diligent on those eyedrops. How are your eyes? Hope you get better with Irubnid (SP)

Lisa, hope your gastritis is in a good place now. My Spring break starts March 21, which if I am not wrong, is your 2nd rebirthday!?

Keep warm and flu-free everyone,
Meri

[rar]

Meri,

Doctors and nurses told me no hot water. The itch and pain were so bad i ignored them. Amlactin seemed to restore the skin somewhat.

I am on preservative free lubricating drops 5 times a day, 5% salt once or twice a day, grease with salt at bed time, and a pressure reducing drop once a day. I tried Xiidra and Restisis which made thing worse. My reading ability is poor, I see double and fuzzy. Overall eyes are terrible.

I will try to send pictures. Let me know what you think.

Ray

[lisa3112]

Hi! Sorry to hear GVHD of the skin is so bad! Hope they think of something to help. Trial and error. I just went on prednisilone for very minor skin gvhd.
Yes my 2nd rebirthday is the 21st of March! And its my sons 3rd birthday the same day 😊 lots to celebrate. My gastritis has totally gone, thanks.
Have a great spring break!