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staceyParticipant
Lillian,
Two months ago I started with small swellings behind both knees. Went to see PCP about 2 weeks ago, and he noticed my right knee was swollen. Had x-rays on right knee which mostly showed osteoarthritis. Since then, both legs from the knee down have started to feel heavy and as if they are retaining fluid. If they are swollen, it is both of them. It is worse in the evening after being on my feet most of the day. My legs feel almost like weights are attached and ache. Sometimes my ankles ache too, even when I lie in bed. I don’t know if the knee and leg issues are a problem with my knee (like a tear), related to the revlimid medicine (such as deep vein thrombosis), caused by MDS, arthritis, or what. The orthopedic surgeon ordered an MRI on my knee and an ultrasound on the veins in my legs, and hopefully I’ll find out more after those tests next week. I hope your swelling goes down. I assume your legs feel heavy and sometimes tingly like mine do. Take care. -StaceystaceyParticipantRevlimid is a white, lightweight capsule manufactured by Celgene company and a derivative of the thalidomide drug. Revlimid works especially well in 5q- MDS patients, but is also taken by other MDS patients and Multiple Myeloma patients (I believe in combination with Dexamethosone or something like that).
Over time, Revlimid can raise your hemoglobin level (and Red blood cell count) so that the patient can be transfusion free. It will fix the size of the red blood cells so the red blood cells are not abnormally large anymore and the hemoglobin carries oxygen better. It seems to fix the defect in the 5th chromosome.
I take it so that I don’t have to live on constant red blood cell transfusions, because after a high number of transfusions, you would need to watch out for iron overload because packed red blood cells in the transfusions are full of iron. I think there is a treatment (Exjade) to help with iron overload, but Revlimid daily is an easier route for me than living on transfusions.
There are side effects from Revlimid which include things like constipation, diarrhea, slightly suppressed white blood cell & platelet counts. Also, the red blood cell count will drop for the first 6-8 weeks until the
Revlimid starts working. The benefits are that I can be transfusion free and not out of breath.staceyParticipantLillian,
You probably know this already, but just double checking– Did you see that you can access transcripts (and audio it seems) from previous patient forums? Both from past years and this year. You can find it on this https://www.mds-foundation.org website. Along the top, go under “For Visitors and Patients” and under there click on “Patient and Caregiver Forums”. I especially find the transcripts from 2017, etc., to be particularly interesting where you can read the question/answer sessions between doctors and patients.
Take care,
-Stacey (5q- MDS, diagnosed 2004, on Revlimid since 2004)staceyParticipantBarbara,
I was diagnosed in 2004 at the age of 34 with 5q- MDS when I was on prenatal vitamins hoping to have children but was found from a physical to be very anemic. My hemoglobin (and corresponding RBC) was affected and one other blood line, I think the platelets. At that time, I was offered 2 treatment plans, and I chose to go on Revlimid which was a clinical trial drug (10 mg capsule) then.
Unfortunately I had to put my plans for children on hold because I couldn’t get pregnant on the medicine (it would cause birth defects). I was also told back in 2004 (and maybe things have changed, you’d have to check) that if I underwent a bone marrow transplant instead it would involve total body radiation which would affect my ovaries and make me unable to bear children. That second treatment option would have meant I needed to store my eggs beforehand and get a surrogate to carry the child. So I chose the 10 mg Revlimid daily capsule instead and had hope that someday I could go off the medicine to have children once my blood work was normal again.
In 2006, when my hemoglobin was high and all my bloodwork (including platelets and whites) was back to normal from the medicine, I talked to my husband and doctor about going off the medicine to have children. I asked my doctor if my children could possibly get MDS, and she seemed confident I wouldn’t pass that gene on. (The few cases of MDS that run in families tended to be environmentally caused).
I won’t go into all the details, but through a lot of praying, good eating, rest, low stress, and more hoping and praying, I gave birth in 2008 to very healthy, identical twin girls who are now 9 1/2 and show no signs of MDS, thank goodness. Towards the end of my pregnancy, my hemoglobin started to trickle down again, and immediately after my C-section, I needed a transfusion of 3 units of red blood cells.
Since you are so young, you do have time before getting pregnant. I strongly encourage you to talk to your oncologist and primary care doctor and your ob/gyn about your lower white blood count and find out how that would affect you getting pregnant before trying to have kids. One question I have for you — can you currently go 10 months without antibiotics for infections? Because there are probably certain antibiotics you might not be able to take in your first trimester if you would get a bacterial infection, for example. You should get a plan in place that if you would get an infection while pregnant, what could they treat you with that wouldn’t be at risk to the baby?
Interestingly, pregnancy increases your blood volume and you might want to discuss how they expect that change to affect your counts, particularly your white count. Would they expect it to raise your white blood count (or lower it or remain the same)? I don’t have a medical background, so I don’t have the answers to these kinds of questions for you. But I would make sure I got my white count to normal first (unless that is impossible for you) and a plan in place and all my questions answered first from those doctors. They should be able to give you some information.
One more thing. I recommend you ask your doctor for a script for monthly blood work and request a copy of the results mailed/faxed or available online to you when you go to the lab. Stay in the loop there and keep on top of your counts in case things change when you ever do start to try to get pregnant.
And…. good luck! I am rooting for you and hope things go well! Let me know if you have any questions. Take care.
-Stacey -
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