MDS-from diagnose to transplant in 9months.

[bobspez]

MDS AZ Wife
I was diagnosed with CMML in Sep. 2016. At 71 and with persistent afib I'm not a candidate for a BMT or SCT and I have been on watch and wait since being diagnosed. CMML generally is accompanied by a swollen spleen so I always feel full, and never feel hungry. I am 6'1" and in a couple of months after diagnosis went from 215 lbs. to 185 lbs. I realized I was losing 3 to 4 lbs a week and so I decided to boost my weight with extra desserts (little cherry pies, oatmeal cookies, ice cream, halvah, chocolate, etc.). I also eat meals I enjoy as some foods no longer appeal to me. My weight went up to 194 +- a pound, and has been there for about a year. I weigh myself first thing in the morning when I get out of bed and if I am below 194 I remember to add more desserts.

Regarding the cough, before diagnosis I had a bad cough for about a month, and I finally got so weak I couldn't walk a dozen steps. When I went to my GP she took an EKG and put me in the hospital. I had afib and my heart rate was in the 180's and I wasn't getting much blood circulating. In the hospital I also had 6 liters of fluid around my lungs which was removed with chest tubes over a two week period. I was also diagnosed with SMZL b-cell lymphoma of the spleen but went into remission after 8 weekly infusions of Rituxan. However a few months later I was diagnosed with CMML. When I came home from my 23 days in the hospital, I was on oxygen for several months. Since then I check my O2 levels with a fingertip pulse oximeter a few times a day. It is currently 96% or better. My pulse is now in the 60 to 90 range due to 5 meds I take for the afib. The coughing had been caused by the fluid around my lungs, caused by the afib. But one of the oncology nurses who was administering the Rituxan told me she thought the cancer could have caused all of it.

Originally Posted by 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.]

Hello everyone,

My dead serious hematologist answered some of my questions at my blood check yesterday, and I was wondering if he was in his right mind.

For those who might have the same symptoms, but thought them too trivial to ask:
1. Q: I know I have GVHD skin, but I itch in places that do not have red spots. Why?
Answer: sometimes rashes and spots do not appear red in colour and cannot be seen (to the naked eye), it doesn't mean there is nothing there, they are there, so they itch. It's also winter, dry weather, so that helps irritate the skin (the itch) more. So use the steroid cream on the red spots/rashes and the itchy non-rash/spots too.

2. Q: Why is the roof of my mouth so dry, it's like cemented.
Answer: Not only the roof of your mouth, your whole inner cheeks and mouth, the sides too, are being stretched out by your moonface, caused by steroids. When your moonface deflates, you'll feel better.

3. Q: I go to the toilet at least 3 times a night, are my kidneys OK?creatinine 0.99(H) eGFR 46.6L
Answer: Your kidneys are fine, when we lower the meds, your kidneys won't have to work so hard anymore. Take sleeping pills.

There were many others including my liver, steroid cream etc. It helped that he answered all my questions.

Most of the answers came back to prednisone, the steroids that cure while causing havoc. The good news was that, since my GVHD skin is in check, prednisone has been tapered from 15mg down to 10mg. That's 2 pills instead of 3 pills. A BIG TAPER! Very happy, though anxious to see whether rashes or spots might bloom again, like Ray's case.

Sometimes I think I have it bad, but when I see photos of GVHD skin from others, in this case Ray's pg13, it gives me a reality check, that things could have been much worse for me. If Ray's skin could get better, then mine can. Actually, it's getting better now, there will be ups and downs, bumps on the way, but we will ride it out by the Grace of God. Thank you Ray. Hope Ibrutinib will get you to a good place with your CGVHD.

My numbers as of yesterday Feb 1st 2018
WBC: 8.2 (H) uh, oh maybe an infection?
RBC: 4.38
Hgb 13.9
Htc 44.2
Platelets 150(L)

Liver numbers high but slowly getting down there every week :
AST 85(H) from 143 in Dec
ALT 118 (H) from 244 in Dec

I guess with these blood counts I can manage that trans-pacific flight this Spring.

Lisa, glad to hear you are getting there, and what a wonderful way to celebrate the day, with a 3 year old to boost !!

Next appointment in 3 weeks time. Here's to hoping that I can still operate on prednisone tapered down during this period.

AZwife, I hope you read Bobspez's post. It sounds so similar, even though Bob is CMML and your husband is MDS.

Very cold now in Tokyo. The flu is rampart. I wear disposable masks every day all the time, even inside, even to bed. I take it off only to eat, drink, shower and brush my teeth.Overdoing much???

Take care everyone, keep warm and keep posting.
Meri

[rar]

Meri,

I would be careful in tapering your prednisone so quickly. The recommendations I see say to reduce 10% to 20% per step, with steps are 1 to 2 weeks depending on how long you were on it. If you cut the immuno suppressant too quickly you run the risk of GVHD. A gradual taper allows the adrenal to ramp up the cortisol as prednisone is cut. Otherwise you run the risk of adrenal insufficiency which is no fun. My pred was cut too quickly and I had both problems. Pred also comes in 2.5 and 1 mg tablets to allow for the gradual taper.

Don't be too impatient. Do it right the first time. I still suffer some from cGVHD including Dry eyes, vision changes, Dry mouth, pain or sensitivity to certain foods, Shortness of breath, Difficulty swallowing, pain with swallowing, weight loss, Fatigue, muscle weakness, pain, of the nerves and muscles, and slight rash on my chest.

I am glad the rash pictures helped.

Ray

[Meri T.]

I've never seen the 2.5mg and 1mg prednisone pills.
All they have here is the 5mg pill, so when needed to taper slowly, the pills are halved and packed by the pharmacy.

My prednisone taper and increase is like a roller coaster ride. The highest was I think about 60mg. The tapered slowly down to 1 and a half pill, that's 7.5mg. My finger nails were too brittle to break the pills, so the pharmacists did it for me.

Let's see, 4th day on tapered prednisone, and yes, there are effects. A bit of nausea, eyes watery.
How is your eyesight at present? Is the Irubnit working?

[rar]

My biggest prednisone dose was 120 mg. I am currently on 7.5 which is said to be the normal amount produced by the body every day which I need because my adrenal no longer works. The 2.5 and 1 mg. may only be available in the US. I hope you are giving your adrenal enough time to start production.

I will see my transplant team in 2 weeks to discuss the Ibrutinib Discount price is $11,660.07 a month. Being a disabled veteran I get all the formulary drugs free. My doctor will have to convince the VA that I need it.

My vision varies from 20/20 TO 20/60- depending on time of day. When bad I have double blurry vision which makes it impossible to read.

Ray

[Meri T.]

Hello everyone,
I haven't been on the computer for awhile because the T-cells decided to attack my other eye as well!!

After transplant my right eye fell to GVHD, it felt as if there was a foreign body in it, all starting with excessive tears and dried up eyes in the morning... However, my left eye is following the same path, with excessive tears, half a year later. So I am resigned to chronic GVHD eyes.

The eye doctor diagnosed inflammation. He gave me artificial tear drops, then antibiotic teardrops and steroid eyedrops. It didn't work, it didn't get better or worse, so I didn't complain until now that the left eye is going down too, I will raise the issue when I see my hematologist this Thursday.

I googled and found out one of the main reasons for cGVHD eyes is linked to tapering of prednisone.
For all of you suffering from cGVHD eyes, you have my utmost sympathy and attentive ears. Please post your experience.

I will post again after my Thursday appointment.
Meri

[Meri T.]

Since my platelets are around 150, I decided to have my teeth checked. Oh dear, 3 cavities ( 2 molars and 1 in the front)! How can that be when I brush and do the mouth regimen so diligently?

It all comes down to a compromised immune system. I am still on cyclosporine.
I had one root canal done today. With anesthesia, it was painless. Glad to know that I have enough platelets to let me have regular visits to the good dentist.

Meri

[lisa3112]

Ahh you have reminded me I need to go to the dentist. I had an stay pre transplant but haven't actually been to the dentist for years.. It was low on my priorities 🙄
How are your eyes now? Hope they have improved! My right eye kept going really red and sore, but apparently my eyes were super dry. Gvhd of the eyes must be horrible.
Good luck! Lisa

[Meri T.]

Hello everyone,
Thursday appointment went fine. Though still high, my liver numbers are stable, not sky rocketing anymore.

I was referred to the eye doctor in the Eye dept of the Hospital, and she also pronounced GVHD on both eyes.
Since it is a GVHD issue, she said what she could do was help the eyes feel comfortable, not CURE them. Besides steroid drops, she prescribed topical eyedrops containing hyaluronan 0.1%.

She said it all comes down to the Hematologist, see how he deals with my GVHD. Cataracts occur in about 40% of transplantees.

It's nice to have an eye-doctor who understands GVHD.
Meri

[rar]

I hope the eye doctor does you some good. I have 4 eye doctors (fuchs, glaucoma, gvhd, gp dry eye). I have been prescribed 7 different eye drops and I find the only thing that helps is lubricating drops and 5% salt drops when they hurt.

I saw my transplant doctor, first time in 2 years. He said my GVHD is to mild to treat and the dizziness is caused by old age.

Ray

[Meri T.]

Ray,
Wondering how the talk with your doctor about Ibrutinib went?

For Lisa too, please do go see the dentist. Don't be like me waiting until root canal was necessary.

I think Ray had a post about young dentists wanting to pull out teeth with big cavities. However, my hematologist said that I could have anesthesia and root canals, but no teeth pulled out. I couldn't catch the reason why not.

Been watching the Winter Olympics, nice distraction from everyday news. Tomorrow is the Tokyo Marathon, another good program, though my eyes need rest every half hour.

Still, life is very good. No regrets having the transplant.
Stay warm everyone, Spring is near.
Meri

[Meri T.]

This should be in the drugs section, sorry. I just wanted to list the meds I am on, and my numbers so others could compare similiarities in our medication. 8months post stem cell transplant, match related donor.
Gvhd liver, skin, eyes.

Prednisone 10mg daily (tapered down from 60mg in 4 months)
Cyclosporin 25mg
Endecavil 0.5
Voriconazole 50mg anti-fungal
Daiphen
Acyclovil 200mg
Edirocal 0.75
Equa 50mg
Magnesium 250mg
Brotizoram 25mg sleeping pills
Fosamax 35mg once a week- for bones.
Caronal - for headaches and pain

GVHD skin lotions: Heparin0.3% cream and spray,

GVHD eyes: Crapid, Flumetron, artificial teardrops, hyaluron.

and also blood counts, liver, kidney numbers for comparision:
WBC: 7.6
RBC: 4.37
HGB 13.9
HTC 43.6
Platelets: 136 L

Segs 80 H
Lym 16.5 L

Liver numbers (still very high):
AST : 92 H (13-33)
ALT : 97 H (6-27)
LD : 237 H ( 119-229)
ALP : 441 H ( 117-350)
y GT : 650 H (9-109)

Creatinine: 1.15 H (0.46-0.78)

I wake up at around 6, I feel a bit nauseous in the mornings after taking my meds, but after an hour or so of cycling around the neighbourhood, then coming home, do housework, I feel quite good. No guests or friends over, can't risk germs and infections. Sleep around 9pm or so. It's good to stick to a regular comfortable schedule.

Praying for everyone.

Meri

[rar]

Originally Posted by Meri T.

Ray,
Wondering how the talk with your doctor about Ibrutinib went?

Stay warm everyone, Spring is near.
Meri

The doctor bad mouthed the Ibrutinib. He said the side effects were bad, it had been tried on only 42 patients, and it is suspect that it got FDA approval on just 42 cases. He said my GVHD was too mild to treat. He said my dizziness, fatigue etc. was old age. Not a satisfying visit.

Our weather is variable. Last week we had a shorts day at 70F and that night it was -8F. Hard to keep warm out doors with below 0 temperature and 45 MPH wind gusts, but 70 in the middle of winter is nice.

Ray

[Meri T.]

Hello everyone,
I was wondering if anyone ever got cured of seasonal allergies after their transplant, reason being the donor wasn't allergic to pollen etc.

My eyes still have "a speck of dust" in my eye feeling. GVHD for sure. I itch a lot, itchy throat sometimes producing a dry cough.

However the symptoms of seasonal allergies that I get every year , itchy red eyes, runny nose, sneezing in the early morning, have not appeared, though everyone I know has. Is it because of my suppressed immune system ???? or because the donor didn't have it?

My appointment with the hematologist is tomorrow, I will ask him about it.

The itch and nausea is taking it's toll on me. I have taken pictures of all the places I itch so that my doctor can see clearly.

Everyone, take care,
Meri

[allank]

Can't really answer your donor allergy question, but I have had spring seasonal allergies all my life but they pretty much have disappeared over the last 4 years. Don't know why, assume your body does change over the years, but it is strange. Not complaining mind you, they were always quite annoying. It is and interesting question you pose however, wonder what other possible changes have been noticed by other transplant patients. I hope your graft/host problems improve for you.
Allan

[Meri T.]

Hello everyone,

My Thursday appointments went well.
The answer to my seasonal allergy question was met with a lecture that I could not quite grasp, I think this is what my doctor was trying to explain to me. Please feel free jump in and correct me if I am wrong.

"Allergy symptoms appear when antibodies (lymp cells) attack antigens (pollen)"

After transplant since I have the donor's antibodies there is a chance (very small) that I will not get the allergies.
However, another scenario: pollen antigens are caught by antigen directed cells (mine), and this info is relayed to the lymph cells (donor), therefore the donor lymph cells will launch an attack on my antigen directed cells, causing seasonal allergy symptoms.

And I got allergy meds, twice a day after meals, the drowsy kind. I am not complaining, the prednisone was keeping me awake at night.

My nausea could be caused by GVHD, or by the lining in my stomach that has not cured completely. I got some more meds for that, in about a month, it the nausea still persists then an endoscopy will be done. I had GVHD gut intestines so he said it could be acute turning to chronic.

The itch. My hematologist referred me to the dermatology dept in the same hospital. I will go next week to show them my itch.

My blood counts were very good.
WBC 7.1
RBC 4.38
Hgb 14.2
Platelets 157

My liver counts remain bad:
AST 90 H (should be around 13-33)
ALT 86 H (6-27)
LD 243 H ( 119-229)
ALP 528 H ( 117-350)
yGT 688!!!! very high (9-109)

though my doctor is not worried, saying the numbers are about the same as 3 weeks earlier, therefore give the body some time to adjust to the tapered meds.

Foods I like to eat: apples, bananas, bread, ice cream.
Strawberry season coming up, but I don't think I will risk it.
Everyone, please keep on posting and sharing your experiences, it helps.

Meri

[lisa3112]

Work! Your WCC is so good, as is your RBC! Mine doesnt look quite as good, still respectable. Mild neutropenia and platelets as slightly below normal.
Good that doctor isn't worried about liver but I can understand why you are keeping a close eye on it.
Overall you are traveling along really well. Keep up the good work!

[Hopeful]

Congratulations on the counts Meri! You have come so far!

I have had bad hay fever all of my life, but while on cyclosporine it is virtually non-existant. My doctor had said that cyclosporine is likely interfering with the histamine response. So, if you are still taking immune suppressors, that could be considered a positive side effect of them

[Grateful1]

Wonderful blood counts Meri...Congratulations!

While I’ve never had allergies, my biggest medical complaint prior to my MDS diagnosis was chronic IBSD . After transplant I was treated for acute GVHD of the upper and lower intestines. After this was brought under control, I am very happy to say that IBSD is a thing of the past and has not returned in the seven years since I had my transplant.... I also experienced high liver and kidney numbers post transplant but both are in normal range today.

Best of luck Meri and keep up the great attitude!

Grateful1

[DanL]

Great news on the blood counts.

As for the allergy question, I experienced allergies for the first time after transplant. I am guessing that it was due to the process of building a new immune system. Allergies have lessened substantially 4 years out.

The liver numbers do look a little high, could be meds, could be gvhd, really hard to say based on what you have given. If I remember correctly, difficulty in the liver can lead to rashes and itchiness, so it might be related.

Keep moving forward!

[Meri T.]

Yes, I am on cyclosporine25mg/day not including prednisone 10mg/day. So that might be what is keeping the allergies at bay. And here I thought my non existant allergies this year was the work of my new donor marrow ! Well, it didn't hurt to hope.

For my nausea, the doctor gave me Rebamipide 100mg 3 times daily after meals for the lining of my stomach, I have not experienced nausea so much. So the nausea wasn't GVHD!? Don't know what to think now.

How about difficulty swallowing. Not painful like Ray, but it feels as if there is something stuck in the passageway when I swallow. Not all the time, sometimes. So not complaining yet.

I have a follow-up check next week for my liver counts. They were terribly high during December, so the prednisone was increased. It helped the liver stable itself somewhat, but never really got back to the "safety zone".

I am really looking forward to being back in the US. I never get seasonal allergies there. Over here 30% of the population has allergies to cedar tree pollen. You would think they could have started growing different kinds of trees to help all the sufferers.

Meri

[Meri T.]

Allan, and Hope,
Good to know that some people could get rid of their allergies !
Our bodies do change, of that I believe in.

Tastes, smell etc. changed too.
I used to have straight hair. Now it's growing back soft and curly !
Meri

[Meri T.]

Grateful1,
Yes, the liver and kidneys are so sensitive post transplant. My kidneys were not doing well right after transplant, so I got meds for that. I was very weak after transplant so I really didn't know exactly what was going on, except that one of the nurses said "this is to help your kidneys" before she hung a new IV pack onto the pole.

I am glad both your liver and kidneys are doing well so many years post transplant. Your post gave me a good boost.
Thank you
Meri

[Meri T.]

Lisa, and Dan,
Actually this is the first time post transplant that my platelets have made it into the "normal zone". Most of my transplantee friends still have low platelets. Doctors say platelets are the last to come around. I think it's the new normal. So, when you see platelets in 3 digits, even though it's in the Low range, it's still OK.

My friend, post transplant one year out, still has low RBCs, hemaglobin levels, some headache, other than that, doing fine. Her new normal.

As Dan has suggested, my rash and itch might come from my elevated liver counts.
I'll find out some more next week when I go for my follow up check.
Thank you for the feedback.

Meri

[Meri T.]

Hello everyone,
I am in the midst of packing for a 10 hour transpacific flight Tokyo- San Francisco. I am doing the night flight.
I am bringing everything I need, basically everything on my bedside.

My main concern, For my ITCH: The airlines restrict cream, lotions and eyedrops to a minimum. It's the topical steroid cream I need with me. Is a pharmacist prescription enough to get about 100grams through legally? I cannot imagine itching through 10 hours and more.

Next concern, Meds: my trip is 2 weeks, I have enough for 3 weeks, but what if something unexpected happens and I am stuck with not enough prednisone steroids/cyclosporine to cover me before I get back to my doctor. Contact the nearest hematologist for a prescription based on my existing one?

I tried to get travel insurance but there were no takers. The fine print stated very clearly they would not sell to consumers of the drug prednisone !

Besides that, this trip is much needed in terms of a psychological recovery.
Any other ideas, any last minute suggestions on what to bring? I still have lots of room left in my suitcase.

Meri