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lisabParticipant
Thanks Robert
My doctor and I work well together. Along with the rest of the team at LRCP in London Ontario. My doctor has tried to give me credit for my outcome but it is a team effort. I do what my doctor says and have taken advise from pharmacists and nurses as well.
Everyone is different though and what works for me may not work for others.
Best advise I give people is to be positive. Outlook plays a roll in it as well.
LisablisabParticipantHi Rok
I’m a low risk MDS patient and have been for 4 years. I’m an Ontario resident and am being treated at the London Regional Cancer Program. I have done very well. My hemoglobin is in the normal range and I am able to do most of the things I did before in moderation. Although it isn’t a centre of excellence (closest one is Princess Margaret in Toronto) I’ve done well. My hematologist is great. He is caring and helpful. Always willing to answer my questions.
My point is that you don’t necessarily need a centre of excellence to be treated. Last I looked there are 2 in Canada, Vancouver and Toronto.
Best wishes to you and your family!
LisablisabParticipantHi Nancy
Sorry about your diagnosis. It is great you are reaching out. This has been a great place to share stories and information. You should keep in mind though that we are all different and what works for me may not work for you.
I was diagnosed in October 2019. I was 55 at the time. Never heard of MDS before so it has been an education for my family too. My hematologist prescribed Revlimid at a 10mg dose. After about 2 months he lowered it to 5mg because my white blood cell count dropped. I’m now holding steady at 140 hemoglobin, which I understand is 14 for Americans. (I should say I’m Canadian)
When I first read the side effects of revlimid (lenalidimid) I was frightened. I have never taken anything with so many side effect warnings. However, I have had very few. The worst is a bit of rash on my chest and face which I handle with lotion. The benefits definitely out way the side effects.
Best of luck at the doctors today. I hope you find the treatment that works for you. If you have any questions just ask. I’m sure someone will reach out help
Best wishes
LisalisabParticipantI’ve been on 5mg for almost 4 years and had some diarrhea issues. Fortunately imodium has continued to help. The pharmacist at the hospital told me that there is a prescription for diarrhea that works well on people that take revlimid. I’m not sure what the name is but maybe your doctor or pharmacist could help with that.
Best wisheslisabParticipantMichele
I’m also on asa 81 and b12 1200mg plus folic acid.
Hope all goes well. Let us know how your doing.
Take care!
LisalisabParticipantHi Michele
I was diagnosed in 2019 and have been on lenalidimid (revlimid) since. When I first started I was given 10 MG and doctor found my white blood cells dropped. I’ve been on 5mg since. I take it for 21 days and I’m off for 7. Could that work for you?
LisablisabParticipantHi Bonnie
I am Canadian as well. I live in Ontario and had no trouble getting assistance for my drugs. My oncology team at the hospital has bent over backwards to help me. Perhaps you should seek another opinion.
I was directed to a social worker in the cancer clinic who helped point me in the right direction.
I hope you can find this helpful.lisabParticipantHi Janice
I’m a Canadian MDS patient. I am on lenalidimid for a different form of MDS. I break out in a rash for about a week between cycles of the drug. I use gold bond eczema lotion on it and it gives some relief to the itching and makes the rash go away. You may want to give it a try.lisabParticipantHi Lew
Know how your feeling. It took me about 2 cycles for mine to climb. Been on it for almost 4 years and my hemoglobin still climbs every so often. I reached a new high this month of 143 (14.3 for Americans). Pneumonia I’m sure would be a set back. Have to keep a positive outlook and hang in there. Best wishes for a speedy recovery. LisablisabParticipantMy husband’s hemoglobin dropped due to kidney failure. They gave him aranesp. It took about 6 months for it to kick in. He is now at a good level for transplant.
On the positive side of things it gave him a taste of what my life is like with MDS.lisabParticipantThis is a point I’ve made several time on this forum. We are all different and what works for me may not work for you. As patients we have to be advocates for ourselves. That is where this forum can be helpful.
If you do try it I hope you will share.
Best wishes
Lisa blisabParticipantHi Scott
I’m interested to know how you heard about this. I’m a del5q patient and take lenalidimid for over 3 years. I have shortness of breath and low energy even though my hemoglobin is in normal range.
I’d love to hear if this works. Simple solution to the problem. I know acupuncture has worked on all kinds of things.Best wishes
Lisa blisabParticipantI was told it was a side effect of both the disease and the drugs by my hematologist. My hemoglobin has been high for 3 years but my energy level isn’t good. Frustrating!
lisabParticipant`hi Cheryl
I’m an mds del5q patient on revlimid 5mg. I too have anemia. I have shortness of breath and low energy. I’m only 58. As it was explained to me these are symptoms of the disease and shortness of breath is also a side effect of medication. So there isn’t much you can do about it. I walk as much as I can. Can’t go as far as many my age but the way I see it, I’m still able to do much. I’ve had to except my limitations and do things a bit at a time. I can’t push myself to far or my legs get weak and rubbery. Also the pain and swelling when I over do things isn’t pleasant.
I’ve decided that despite it all I’m still alive and I can still have quality of life I’ve just had to except that it comes with limitations.
This may not be the answer you were looking for but I have had to except and accommodate my disability.
Best wishes to you bothlisabParticipantI can’t remember what dose I started at. I do remember being given a low dose to start and then it was increased.
I have no experience with antidepressants so I can’t help there.
It didn’t seem to help my arthritis. I do take glucosamine confronting and arthritis tylenol when it is bad. I find that this works but I’m not pain free. I have to put up with some pain. Exercise helps as well. I’m not permitted anti inflammatory meds as it conflicts with other meds I take.
As I’ve said before what works for me may not work for everyone.
Best wishes to you and I hope Lyrica works for you. -
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