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MDS Myelodysplastic syndromes

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  #76  
Old Mon Jan 29, 2018, 05:37 PM
bobspez bobspez is offline
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Location: Southern New Jersey, USA
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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.


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Originally Posted by MDSAZWIFE View Post
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
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Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
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  #77  
Old Fri Feb 2, 2018, 01:33 AM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
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Talking Prednisone tapered

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
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017.
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  #78  
Old Sat Feb 3, 2018, 08:02 PM
rar rar is offline
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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
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  #79  
Old Mon Feb 5, 2018, 12:19 AM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
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Prednisone pills

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?
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017.
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  #80  
Old Mon Feb 5, 2018, 12:45 PM
rar rar is offline
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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
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  #81  
Old Mon Feb 19, 2018, 05:20 AM
Meri T. Meri T. is offline
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GVHD eyes

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
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017.
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  #82  
Old Mon Feb 19, 2018, 05:31 AM
Meri T. Meri T. is offline
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Wink Taking care of teeth

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
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017.
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  #83  
Old Mon Feb 19, 2018, 07:48 AM
lisa3112 lisa3112 is offline
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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
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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