[stacey]

Californiagirl,
I had surgery to remove my thyroid back in 2011, and I found my old lab results from Quest from before and after. My whites and platelets did not drop post-surgery. Maybe someone else had a different experience, though. If the doctors do want another BMB, I hope all goes well for you. Take care, -Stacey

[stacey]

Susan,

20 years ago, when I was about 34, I was diagnosed with low risk 5q- subtype MDS with a normal blast count. The 5q- meant I had a specific defect in the 5th chromosome. At the time, I was also severely anemic. MDS had affected my red blood cells (and related hemoglobin), and I think just one other line (white blood cells) which wasn’t as big of a problem.
Upon diagnosis, I either needed medicine or red blood cell transfusions from time to time because of the problem with my hemoglobin being too low (5.9 at its lowest). That affected the oxygen being circulated in my body. I was extremely out of breath. The medicine that was recommended to me (Revlimid) had been in clinical trials and was known to work well at treating that specific subtype of MDS. It could boost the hemoglobin and red blood cell count so I could avoid getting packed red blood cell transfusions instead. The only thing they used to do for my white blood cell line was to give me a Neupogen shot a long time ago. That maybe happened only twice, to help boost my white blood cell count. Otherwise, I think I would have been in more of a watch and wait situation as well.
Hope this helps, and I hope others can chime in to give you their perspective for another type of MDS.
Best wishes to your husband.
-Stacey

[stacey]

Hi Paula,

Sorry for the delay in getting back to you — I’ve had a pesky cold I’ve been dealing with.

You and I could be twins. I also take Revlimid, now sometimes don’t go to the bathroom for up to a week, and I am also experiencing loose stools. I too really like oatmeal from time to time (with walnuts & raisins) and my favorite pastime is also to sit in a chair and read (mysteries or books with a twist ending are my favorite). I too have tried Metamucil, Benefiber, Sennakot, etc. Sennakot also seems to work the best of those for me.

I started Revlimid back in 2004 and it has been quite the journey. For so many years I had just constipation, then it switched to about a year or maybe two of the constipation followed immediately after by very loose stools. That is when I scheduled a colonoscopy which took place in early this past November due to the change in bowel habits. The colonoscopy thankfully came back clear, and the gastroenterology doctor suggested to add more fiber to my diet. I told her I have constipation but then I have a great deal of diarrhea, and she said I “needed the fiber to add bulk to the stools.”

A long time before that, when I had only constipation, my oncologist (who has since retired) suggested prunes (or prune juice). I only tend to take a few prunes with a large glass of water about once a week, when I need to finally get relief, and they do help a bit. In addition, my current oncologist had told me within the past year that I should actually try eating a few prunes EVERY DAY to see if that works. So that is the suggestion I pass along to you, try a couple prunes daily in your diet with a large glass of water. (Fiber moves through better with the water.) Of course, you might have to adjust the prune portion to see how much works for you. If you have never tried them, I find them in the grocery store in a bag typically in with the raisins or they might be in the produce section instead. And don’t worry, you get used to the unique taste, and now I don’t really mind them.

One other thing that might help (which I again only do on occasion yet need to start doing more often) is try having a HIGH fiber fruit (a handful of raspberries or blackberries; I prefer raspberries), coat it with a bit of plain yogurt (if you want and assuming you are not lactose intolerant). You can sprinkle a bit of granola on top if you’d like since you also like oats. Make a great mid-day snack that contains a good fiber source.

I wish you all the best & hope this helps you at least a little bit.

Take care,
-Stacey

[stacey]

Dear Maibl,
Sounds like you and your husband went into the BMT in a great frame of mind and positive attitude. He’s lucky to have you by his side. Hang in there, and know I am thinking of you and praying for his success.
-Stacey

[stacey]

Lisa,

I’m super happy for you. If we lived closer, I’d give you a big hug and take you out for a Starbucks or smoothie to celebrate! It’s great you have a good friend that you can share things with and have found a caring doctor too. Best wishes for many more wonderful years to come,
-Stacey, 5q- MDS

[stacey]

Hi Nancy,

When I started taking Revlimid as a clinical trial drug for compassionate use back in 2004, I noticed my doctor would count the pills I had remaining in my bottle when I brought it in to her by tilting the bottle and counting by sight. She actually never touched the capsules with even gloved hands. So since then, I don’t touch the medicine when I take it, I just tilt the bottle, put a single capsule in the pill cap, tilt my head back and drop the capsule in my mouth so it doesn’t actually touch my hands. I still wash my hands in my upstairs bathroom after just as an extra precaution. The medication guide and pharmacist counseling will mention not to crush or chew the capsules, but it sounds like you are aware of that already. I take the medicine with water from a separate glass than the glasses my children ever use, and it is washed after that single use.

In addition, I wash my clothes separate from my children’s. This is probably totally unnecessary, but I never knew if Revlimid would come out in my t-shirts if I sweat, so I started this all those years ago and just stayed with it.

I also keep my Revlimid at the very top, high shelf of a closet inside in its chemotherapy warning Ziploc bag that was shipped with the medicine. It is at a constant temperature, kept away from light and heat, and I put a childproof lock on the door handle when my kids were babies. My kids are teenagers now, but it has all stayed that way ever since.

Hope this helps. Best of luck to your husband.
-Stacey (age 51, 5q- MDS, diagnosed in 2004, currently taking 5mg Revlimid capsules every day daily, no other medications except Synthroid)

[stacey]

Lee – I am so glad your husband’s smart oncologist has figured out a combination of medicines to take with the Revlimid that helped with his severe rash. That’s very good news that his Hemoglobin is now at 12.7.

Paula- Thank you for the kind congratulations regarding my children. Not a single day goes by that I don’t thank God for them.

Take care and best of luck,
-Stacey

[stacey]

Hi Mary and Paula! Mary – sorry for the delay in getting back to you and saying hello.

I started taking Revlimid in 2004 when it was a not yet approved clinical trial drug, and I was given it for Compassionate use due to my age (33). Therefore, at that time, and until it was approved, I received it at no cost. I initially started at 10 mg in 2004, but it was lowered to 5 mg after about 6-8 weeks when my red blood cell count and Hemoglobin improved. I take the dosage every day with no days off. Every year since 2004 I have been on the 5 mg dose except when I went off of it to have children (mid 2006 to about 2010), then I resumed the Revlimid because my hemoglobin had fallen while off the medicine. Again, it took between 6-8 weeks for it to start working for me and showing a hemoglobin improvement.

SIDE EFFECTS:
When first starting Revlimid: Very itchy scalp (assuming due to old cell turnover), very few small patches of dry skin on arms and legs and dry skin on face, fatigue, constipation & stomach pain, Lower White Blood Cell count & neutrophil count (those continue to be at least slightly suppressed even after hemoglobin count improves), lower red blood cell count (until hemoglobin count improves), possible skin sensitivity to sunlight.
The Last few years: Same symptoms as above but ALSO occasional leg cramps at night, diarrhea alternating with constipation.

TRANSFUSIONS: I’ve had a total of 8 units of blood. 3 units when I was first diagnosed or just starting Revlimid; I believe the next 2 units were while taking Revlimid when my counts were only going down (in that 6-8 week window) before going up; The last 3 were when I had just given birth to my twins (not on Revlimid then).

COST: It was free to me initially. Now, I have Aetna Medical with CVS prescription insurance through my husband’s work (I don’t work anymore) with a several thousand dollar deductible. Bristol Myers/Celgene has a co-pay assistance program, which I sign up for every year. For me, it helps to delay the yearly deductible payment for a few months, because my insurance applies it until it runs out but then I still have to pay my deductible afterward. Other insurance plans may handle that differently. I know the Leukemia and Lymphoma Society also offers MDS copay assistance but based, I believe, on an income threshold. I think there is at least one other program out there that offers co-pay assistance for MDS patients.

FYI: Over the years, I thought there were at least 2 people on this board who have had an allergic reaction to Revlimid for some reason and had to discontinue treatment, but I have never had this issue.

Any other questions, please don’t hesitate to ask me, I’m happy to answer any.
I hope all goes very well for both of you.
-Stacey

[stacey]

Kati,
My information is a bit outdated, sorry, but here is what happened when I got directed donations in 2004. At the time, I was about 34 and newly diagnosed with 5q- MDS, and my hemoglobin had dropped to a 5.9. I remember I felt so tired I didn’t want to get off the couch. Initially I was hesitant to take blood from anonymous donors at the bank, so I had people I knew donate. I received 3 units at the time. Here’s what I remember:
1 – First, I called my local Red Cross to ask questions and get info on how directed donations worked. They took down all my personal information. I don’t think that I needed to give them my donors’ names at that time.
2- Next, my potential donors went in to their local Red Cross to donate and told them the blood was specifically for me. None of them lived in my city. Several were across state and one was out of state, and the whole process still worked smoothly.
3- The donors were asked a list of questions before donation, and at that time, 2 of my donors were rejected. My mom was rejected, because she had recently had an eye problem, and a friend of my mom’s daughter was rejected due to anemia. In addition, the doctor said beforehand that my husband should not donate to me since we didn’t have kids yet. So I ended up needing more people lined up than expected.
4 – The blood was all tested, collected, shipped, and I showed up at my local oncologist’s office and got the blood with no issues whatsoever.
5 – Later, my donors mentioned they got quite a few calls at home afterward from the Red Cross asking for more blood donations, but they let them know they were saving the blood for me in case I needed future donations.

My blood type is A+, and I received two units of A+ and 1 unit of A-. Note that I could take from a negative RH factor because I was positive, however, a negative RH factor can’t take blood from a positive RH factor because of the antibodies.
By the way, after I got those 3 units, I was so impressed by the screening and testing done by the Red Cross that I had no worries about getting any future units without directed donation. But in a time like this with the blood shortages, I can see why you’re thinking about directed donations. Best wishes to you both.

-Stacey

[stacey]

Just another opinion for you. I am aged 51, have had 5q- for almost 20 years, I decided to not get any Covid shots, nor did I get Covid at all. My oncologist never advised or encouraged me to get the shots. I also have never had the annual flu shots, and I don’t remember having had the flu since the stomach flu roughly 8 years ago. I am a bit of a homebody in wintertime, have always used hand sanitizer faithfully after leaving a store and then washed my hands as soon as I got home; this was my typical practice LONG before Covid. Since Covid started, I have traveled out of state a couple times, have stayed at a hotel, a condo, rode elevators with strangers, swam in pools and lakes, been at a busy rest stop, been to the movies once, and went out to eat at restaurants maybe 10 times. No one in my family has had Covid, and I haven’t even had a cold since before Covid hit in 2020. I also know of several families where a few members of the family had Covid and the other family members in the same household never even got Covid. Since getting MDS, my general rule of thumb is to be more of a homebody in winter, with online shopping instead of crowded stores, keeping to immediate or smaller family gatherings on holidays. Then I try to take advantage as much as possible to get the fresh air and vitamin D sunshine boost in spring and summer; it is good for the immune system. I tend to spend more time seeing extended relatives in those late spring, summer, and early fall months when there are less germs and double check no one is unwell before visiting. So far, this has worked out for me. Good luck.

[stacey]

Hi Luke,
I have MDS 5q- and have been on Revlimid, mostly 5 mg, since 2004. Since then, I have had papillary thyroid cancer (approx. around 2011) and had one mole removed awhile ago from my back which I think was basal type. Sorry to hear about your secondary cancers as well. I am thankful that Revlimid has worked really well for my blood levels over all these years, but it was not without a few negatives (like stomach pain as well). Best wishes to you.
-Stacey

[stacey]

Mary,

My hemoglobin tends to trickly down slowly for my 5q- MDS. Also, as my hemoglobin drops, my MCV (size of the cell) slowly goes up (further above 100), indicating the cells are getting larger and more abnormal.
I don’t really understand the tiredness. When I was a 5.9 many, many years ago, I didn’t want to get off the couch. That was a real low point with very low hemoglobin right before I got transfusions. However, I have more recent days where my hemoglobin is more normal, yet I just feel tired, like I don’t want to do ANYTHING and can’t wait until bedtime. Other days I have a little more energy and can get things done around the house. It’s a very confusing disease, but I personally think your 10.2 level could be causing your tiredness, because your heart is working harder to circulate the oxygen.

[stacey]

Donna,
Thank you so much for taking the time to post. I hope you feel better very soon.
-Stacey

[stacey]

Kathy,
Thank you so much for your response. I wish you & your husband the very best.
-Stacey

[stacey]

Bob,
Thank you for the info about compromised immune systems and for the interesting article.
Best wishes,
-Stacey

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