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5q minus syndrome – New to Forum

HomeForumsPatient Message Board5q minus syndrome – New to Forum

This topic contains 43 replies, has 9 voices, and was last updated by  Jason Hay 3 months, 3 weeks ago.

Viewing 14 posts - 31 through 44 (of 44 total)
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  • #22754

    jimkufis
    Member

    Hello Kenneth in VA. Jim Kufis here. Its good to hear that you are experiencing good results with Revlimid. I particularly like the 14g/dL of Hgb. I have not been to that level in 5 years! As you indicated we do not have a good option for a "cure" to MDS other than the BMT and this is not a particularly good option for when your my age (70 yrs).

    Currently, I am taking 5mg of Revlimid every other day and my Hgb is 9.1g/dL. At this level I am still anemic but I recently did a 5K walk in 50 minutes and I was not exhausted after the walk. The most noticeable effect of the anemia is that I am tired at the end of the day (6pm) but other than that I can do most everything without difficulty.

    My WBC is 2.3k/uL which is still low and my ANC is above 650 which is low but OK. The Platelet count is 158. My hematologist thinks I should stay with this 5mg every other day for now. Apparently, his position is that if things are working and I don’t need transfusions its best not to rock the boat.

    Like you, I have been on Revlimid for 10 months. My abnormal karyotype is T(3,3) which is that the long legs of chromosome 3 have swapped positions and a few genes have changed position. Revlimid does work on other karyotypes that are not 5q-.

    With luck, these bright young researchers may come up with a fix for this MDS.

    #22755

    Hey Jim,
    Good to hear from you, as always.

    Glad to see the alternate day regiment is also working for you. I don’t think there is much literature defining the half life of the drug but, obviously, your and my experience indicate that it is longer than 24 hours. So between us we can say that 100% of our population (2) has seen no detrimental effects ( and it effectively cuts the price in half as well) ;~}

    I hope your WBC and ANC will rebound a little with the change. I am not ready to change to 5 mg as yet. Cost is the same as far as copay is concerned. Now when I retire (if ever) and go on Medicare I will probably switch to Canada/India and look into cost differences then for 5 vs 10. I think 10mg was $466 for 30 was abt $250 or so for 5 will be closer to what I am paying now in deductibles.

    I take heart watching the chemical trials for new potions and especially in the area of histone deacetylase (HDAC) inhibitors – compounds designed to reactivate genes that normally protect against cancer but are turned off by the cancer process. There’s a good article on that in "MyeLyloma Links" this week.

    Keep fighting the good fight, good sir and I will "look for you on the flip-side".

    #22773

    Just thought I would give an update on my condition as I just finished my 9th month on Revlimid 10mg.

    Got my results from the clinic today following a routine visit to the Oncologist office for a CBC:

    WBC steady at 3.8
    RBC steady at 3.96
    Platlets climbing @ 255
    Nuetrophils variable but stay between 700 and 800
    Hemogobin steady at 14.0
    Hematocrit steady at 40.5

    I feel very lucky that the Revlimid continues to provide a great quality of life for me and sometimes even forget I have cancer.

    I have been eating as healthy as I can and stay away from red meat, eat mostly fish and chicken plus as many fress fruits and veggies as I can afford.

    I will continue to "ride this horse as long as I can".

    I wish my fellow travelers good spirits and good health.

    Gene

    #22777

    May God always be with you. Thank you for the update. God Bless.

    #22778

    Zoe
    Member

    What wonderful numbers!!! I am happy it is working for you.

    Zoe

    #22841

    Rachael
    Member

    Hi Gene,Jim & Zoe

    My bone marrow results are in and they have changed slightly. The chromosome test takes time and so those results were not ready. My blasts cells have increased from 2% to 6%, but the specialist wasn’t too concerned as he is pretty positive that Revlimid will bring the blasts cells down. The dizziness and nausea I’ve been experiencing are still a mystery to the specialists as they’re not typical MDS symptoms. I’ve been taking nausea tablets and they’ve been alleviating the problem. On the 4th of September I will commence with Revlimid, in addition I’ve been told to take aspirin to reduce the risk of thrombosis. I’m a little nervous as the side effects look daunting. Do the side effects start straight away or do they occur over time? Currently my Hb stay stable with blood transfusions ( 90 -100), but my neutrophil cell count is around 0.85, my platelets are Ok but seem to be decreasing.

    The Specialist said I will probably have another BMB in six months to review my blast cells and chromosomes. I’ve got some praying and positive thinking to do. I’m hoping I’m one of the lucky ones who don’t experience too many side effects.

    It’s great to hear that Revlimid has worked for you both. I really look forward to being transfusion independent.

    Best wishes to you all.
    Rachael

    #22842

    Rachael,

    Please pray. It is amazing what the power of prayer can do. I was diagnosed 6 months ago with MDS. The docs were already preparing me for Allogeneic Transplantation. They decided to do a rebiopsy in six months and so I went 7/30th for my 6 month BMB. I went this past Monday, 8/23rd and I was told that my BMB was normal. They found nothing that would indicate that I had leukemia or even MDS. I don’t what happened, but I truly believe this is a miracle of God. My relatives and friends had prayers all over for me. I am amazed on how God can move mountains no matter what the cause is. Six months ago I devasted with the news and lived six months or torment not knowing what was going to happen to me and here I am today given a 2nd chance in life thanks be to God. Please pray, pray hard. God listens. My thoughts and prayers are with you. He will be with you all the way through. He will not abandon you no matter what you need to go through. Amen to that. Take care and keep us in touch. God Bless.

    simplistic007

    #22862

    Rachael
    Member

    Thank you simplistic007 for your kind words and support.

    #22869

    You are very welcome. God be with you. Thank you for taking the time and keeping all of us posted. My thoughts and prayers are with you and all on this forum. God Bless.

    #22970

    Rachael
    Member

    Hi all,

    Just wanted to check in and say hi. I had my specialist appointment and received great news that the Revlimid has really started to improve my Hb. It was 90 when I first started, and it is now an amazing 124. The specialist was impressed by this increase. On the first cycle the platelets dropped to 91, but this cycle they increased to 106. I’ve had no change to my white cell (2.6) and neutrophil count (0.7). They are relatively low and I still need to watch out for infections. It’s good to feel well again. I start my third cycle of Revlimid on Saturday.

    I hope you’re all well.

    Best wishes
    Rachael

    #22971

    Mary4Mike
    Participant

    Congratulations Rachael!

    You are one of the blessed one. Enjoy the feeling of well being!

    Mary

    #22974

    Rachael
    Member

    Thanks Mary for your kind response. I do consider myself lucky and am hoping that it continues to improve. I have an eleven year old son whom I adore and this improvement has given me the hope that I needed to live my life to its fullest potential.

    Jim, Mike, and Zoe.
    I hope you’re all doing well and that your treatments are still working.

    Rachael

    #23415

    Jim,

    I have been away from the forums for several months, really since Spring.

    I wanted to see how you were getting along?

    Drop me a line or respond here if you wish.

    My private email is gene@ntw.bz

    Thanks, Gene Milburn

    #34752

    Jason Hay
    Participant

    I’m 63, diagnosed with stage 4 Pancreatic neuroendocrine tumour (PNET) on 5/18/16, I was taking Afinitor until June of 2017, but my tumor stopped shrinking and I was developing a mass in my lungs from the drug. I started taking 50 mg of SUTENT in June 2017, 28 days on and 14 days off. Until now it seems good. I have to use Indian Indian Sutent. because I can not afford for the very expensive Brand one. Thanks for the online pharmacy, Very trustable and affordable. Wish all of you keep healthy and everything goes well in 2018.https://www.bonhoa.com/

    • This reply was modified 3 months, 3 weeks ago by  Jason Hay.
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