[stacey]

Janet,

I am so very sorry you are going through pain and night sweats and things haven’t been getting better.
First, just to clarify on your endoscopies — it sounded like they were unable to find the source of the bleed, and therefore were unable to do any kind of laparoscopy laser surgery to halt the source of the bleeding (the watermelon stomach). So they did endoscopies, but no actual laser surgery on your stomach to help with that, correct? I wish you could find someone who has experience with that condition to do the actual laser surgery; that would be the best option of treatment so you don’t continue to lose iron from that stomach bleed.

Second, Please tell us what region you live in. Someone on this board could hopefully recommend a better hematologist for you to see near where you live.

I would also look at clinicaltrials.gov and search on watermelon stomach to see if you there are any clinical trial options for you that are currently recruiting. I noticed on that website that Thalidomide has been studied with that condition. Assuming it had positive outcomes (at first glance, I think it had), and if your white blood cell counts and platelets weren’t too low to try it, I would ask the hematologist about it. I take its derivative drug, Revlimid, for my (5q-) MDS bone marrow disorder. A hematologist should be very familiar with that drug (because it’s used for other blood disorders like multiple myeloma), and perhaps that is also an option. There are some side effects with that drug (neuropathy, etc.) to be aware of. But that is something I would at least inquire about if it was me. I also wouldn’t hesitate to participate in some kind of clinical trial if one is available and you meet the requirements for enrollment.
You are going through so much and I hope things get better for you.
-Stacey

[stacey]

I was diagnosed in 2004 with MDS and am now 49. Good point Laura, Vitamin D could be a cause. I know I have had low Vitamin D since my diagnosis, and I once took a doctor prescribed mega supplement of Vitamin D and for some unknown reason didn’t absorb it. It still trends low. In addition, I had a tear and herniated disc years back, and they mentioned they saw I had an abnormal amount of osteoarthritis for someone of my age. I have also had off/on unusual problems with my legs — days where I woke up limping for no reason; times with heaviness in legs plus ankles aching in bed at night; below my knee caps ache some days. I know a scan on my legs I had last year also showed osteoarthritis. It made me wonder: does MDS contribute to arthritis flare ups? A certain amount of arthritis is expected as we age, so I don’t really know what to think.
-Stacey

[stacey]

Hello everyone,
I started taking Revlimid in 2004 when it was a clinical trial drug.
The longest break I ever had was between 2006-2010 when I stopped to have children.
Other than that, I have been on Revlimid daily except if I choose to take an occasional summer break from the medicine. I have found that it has worked for me over all of these years including when I resume taking the medicine.
In response to someone’s question above, here is a Celgene website that mentions financial support for Revlimid and the patient support phone number. I hope they can help if you haven’t tried them yet:

Learn about financial help

Someone else mentioned about side effects:
The side effects I have had are primarily: diarrhea, constipation, dry skin, fatigue, some other counts (such as white blood cell) are slightly suppressed for me while taking Revlimid but those have not presented me with issues.

Best wishes to each one of you.
-Stacey, 5q- MDS diagnosis, 5mg daily Revlimid capsule (no other added medicines or shots).

[stacey]

Does your oncologist check your spleen when you go for an appointment?
I have had 5q- MDS since 2004 and have been on and off Revlimid for the low hemoglobin since then.
I have never had a loss of appetite, nor any kind of feeling of fullness in my stomach, nor ever lost weight.
One of my two oncologists (the local one) would still check my spleen every single visit, just to make sure it wasn’t enlarged, but I never had a problem with that.
I was just wondering if an enlarged spleen from the MDS was the cause of the loss of appetites I’m reading here or if it was a side effect of some of the medicines that were recently taken.
Best wishes to each of you,
-Stacey

[stacey]

Kathy,
Were you on at least a 5 mg daily dose of Revlimid? Also, did your doctor ever try increasing the dose before switching you to Vidaza? I was just wondering, because my impression is that even though it has its own side effects, the Revlimid capsule would have been an easier treatment plan for you than the Vidaza shots.
Wishing you all the best,
-Stacey (also 5q-)

[stacey]

Hi Richard,
Sorry I can’t be of more help, but I have never tried any alternative medicines.
I’ve only had Procrit shots, Neupogen shots, 10 or 5 mg Revlimid capsule, or have taken a break from medicine.
Hoping someone responds soon who has tried one of those alternatives you mentioned.
Take care,
-Stacey

[stacey]

Eric,
Couple of questions:
1 – Are you getting all your labs done at the same place?
2 – Were you sick this past month (between Jan->Feb) that it could have affected your counts?
3 – Do you have a script to go on your own for March lab work soon to check if your HGB is going to bounce back?
4 – How do you feel in general (out of breath, tire easily, more colds than normal, or relatively fine?)

I had Procrit shots a long time ago (about in 2004), which gave me a short-lived boost it seemed in HGB too.

I’ve also had Neupogen shots for a lowered Neutrophil count, the last threshold of which was a shot if my Absolute Neutrophil Count (ANC) dropped below 1000. One time, maybe 2 or 3 years ago, I had a fluke ANC of in the 600’s out of the blue, and I don’t know why that happened, I felt ok, and I called my doctor who said we will monitor it. The next month, it came back up. So, basically I am surprised they are using 1200 as a threshold if you are not getting sick any more often than normal. I’m also wondering if a Neupogen shot is an option for you. I would see a boost in Neutrophil count after I got just a single shot. Maybe you could ask your doctor if that would ever be a possibility for you and factor in the cost, because I don’t remember how much it costs.
-Stacey

[stacey]

Within a few years after being diagnosed with MDS, I was diagnosed with both hypothyrodism and low Vitamin D levels. Both of these have fatigue as a symptom. My vitamin D still continues to be mysteriously low. I don’t know if these are a result of the MDS or not, but I just wanted to mention them as a heads up in case that is something some of you haven’t had checked in awhile that could be contributing to your fatigue. Also, they say not drinking enough water adds to fatigue, and I know I’m not always great with that either, especially combined with the dry, cold weather I’m having here in Pennsylvania. On the rare days I do exercise, I think it probably does help me sleep better, but I have to admit, some days I’m just too tired to think about it, and I don’t make it a priority in general. I’m impressed with those of you who are both motivated and also able to keep up with a regular exercise routine.
-Stacey

[stacey]

Hi,
I was diagnosed in 2004 with 5q- MDS and have been on and off Revlimid ever since.
I am now 48 years old and am doing fairly well. No transplant planned in my immediate future.
I wish you guys all the best.
-Stacey

[stacey]

Roy,

I was diagnosed in 2004 when I was 34 with 5q- MDS. I had asked my hematologist that year the same question about whether my children would inherit my disease. The answer that I received was a no. In 2006, I stopped taking my Revlimid capsule used to treat the disease (you can’t take that and have children), and in 2008 I had twin girls. They are 10 now and healthy, and I feel very lucky and thankful.
Just as an fyi, my husband and I opted to bank their cord blood because it gave me extra peace of mind. I’m not positive that it would be used, if ever needed, though.
Best wishes to you.
-Stacey

[stacey]

Jack,
When I was first diagnosed in 2004 with 5q- MDS (no blasts), I saw Dr. Selina Luger at Penn Medicine in Philadelphia which is a Center of Excellence. She is a terrific doctor and extremely knowledgable about the disease. That might be about a 2 hour drive for you, and perhaps someone will give you a recommendation that is closer, but I did want to pass along her name to you in the meantime.
Best of luck,
-Stacey (age 48, started with 10 mg Revlimid, currently taking 5 mg Revlimid daily)

[stacey]

Hi. I have been on and off Revlimid for 14 years — since when it was a clinical trial drug. I initially started at 10 mg, but once it started working, I was lowered to 5 mg and remained on that dose for many years. For a brief time, one of my doctors lowered my dose to 2.5 mg to lessen the side effects, but I was not a fan of that dosage (not sure it worked as well for me) and asked for it to be raised back to the 5 mg. I am still taking the 5mg. I have never done the 21/7 cycle; I was always taking one capsule daily. It has worked very well for me all these years. I have taken (by choice) a few breaks in the past from Revlimid, and when I resumed, it has always worked again, thankfully. Best wishes to each of you.
-Stacey

[stacey]

Hi Hannah,

I was diagnosed in 2004 at the age of 34 when I had just been married for 3 years and before I had my two (ten year old) children. I have 5q- MDS which is a milder form. I have no blasts. My main problem is my hemoglobin and red blood cell count which trickles down slowly over time when I am not on any medicine. Over these past 14 years I have had about 8 units of red blood cells transfused total and have been on a capsule medicine called Revlimid off and on which works particularly well in people with my condition (5q-) to fix the red blood cell count and helps to keep me transfusion free. If you saw me, you wouldn’t know I was sick– I just get out of breath when I go up steps or walk uphill, have a little fatigue, maybe a little paler than normal.
Early diagnosis was so overwhelming, I know. I still don’t know how I got this disease. I found out when I went in for what I thought was a routine physical. I hope you are meeting with a doctor who has a lot of experience with MDS and where you feel comfortable asking many questions. One thing that helped me early on was going to one of the conferences when it came to my city (Philadelphia). There I could meet other patients, a doctor presented slides with detail about the disease, what are the different types of MDS, and treatments, and the doctor then answered group questions. I definitely recommend that if you can attend one sometime.
Best wishes to you & your fiancé. Ask lots of questions of your doctor at your next appointment Friday and let me know if you have any for me too. Take care, -Stacey

[stacey]

David,

I was diagnosed in Feb 2004 (over 14 years ago) with 5q- MDS at age 34. I have been taking 10 or 5 milligram Revlimid capsule off and on since and have never done a transplant. Is Revlimid an option for you…?
I told my husband, only brother (potential match) and my mom (the worrier) right away. (My dad had previously passed away.) I didn’t tell any friends for a long time (years) until I was more comfortable. Maybe that had a lot to do with my mom’s reaction. My kids are just 10 and still don’t know. They haven’t noticed my regular monthly blood work or doctor appointments yet. For what it’s worth, I don’t plan on telling them unless there are ever obvious physical changes in my appearance from the disease or treatment that they would pick up on or if I knew I was going in within the year for a transplant. If they ever ask direct questions when they are much older, I would just say I have some “irregular cells” and leave it at that.
Since you are newly diagnosed and low risk, I think you could wait a bit to tell your adult kids until you have more info on your treatment plan and what to expect. But this is a tough, personal decision, and hard to know what is best to do. I wish you best of luck. Take care,
-Stacey

[stacey]

In terms of nutritional foods to benefit red blood cells, whites, platelets, or minimizing risks, see:
https://www.mds-foundation.org/wp-content/uploads/manual/2015fallnewsletter.pdf
Look for the article titled: “Nutritional considerations in MDS” starting on page 26 in that newsletter.

Also, if you search the forum (top right, under “Search Forums”) for “diet”, you’ll find an old thread with a posting (scroll down past a few of the postings to see it) where someone put their daily detailed diet plan if that helps any.

Hopefully others will post more about their own particular experience with diets & supplements for you.
Take care,
-Stacey

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