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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 2 weeks, 4 days ago.

Viewing 15 posts - 1 through 15 (of 44 total)
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  • #22555

    Rachael
    Member

    Hi,

    My name is Rachael and I was diagnosed in October 2008 with MDS (5q minus syndrome). I have been participating in an Australian forum and have not found too many patients of my age (38 years old) with MDS. I am extremely lucky that this was diagnosed early. I require no treatment, and am being monitored on a six weekly basis. Frustration comes from not knowing how this disorder will progress. I would love to hear from anyone with a similar story.

    Rachael

    #22558

    Hi Rachael,

    I also have that diagnosis.

    Do you have the isolated del 5q- or are there other chromosome abnormalities as well?

    I am having good luck with Revlimid currently. Thank goodness my group health insurance is picking up the majority of the bill each month. My outlay is a $200.00 deductible (which is still enough).

    I had been anemic and fatiqued for the past few years but didn’t reach a low enough RBC/HCT level till last September for my Drs. to take the anemia seriously enough to begin more elaborate testing (BMB).

    I have been transfusion independent for 10 weeks now after starting Revlimid in late November. I’m not sure if the plan will be to stop the drug once my WBC and platelets bounce back or to just lower the level. I don’t want to go through another BMB but am interested to see if the chromosome issues have gone into remission or been corrected.

    Welcome to the forum, I’m sort of new here myself.

    #22561

    Rachael
    Member

    Hi Kenneth

    I have been given an isolated del 5q- diagnosis. When the time comes I would be a great candidate for Revlimid, but in Australia it is not approved on the government PBS scheme. They only just approved it for Myeloma. When I did some research on the cost of Revlimid it was around AUST$11,000 per month. Unfortunately I can’t afford this. The other drugs that are given for MDS patients are also not on the PBS. So my only options today if all does not progress well, is blood transfusions and a bone marrow transplant(BMT).

    Because I’m under 50, the BMT is an interesting option ( but fraught with its associated risks). My specialist stated my young age is the most challenging aspect with the subsequent management when the disease progresses ( e.g tranfusion dependant, symptomatic cytopenias or disease transformation).

    My bloods have been on steady decline for a year now, and I am starting to become slightly nervous about it all. I don’t enjoy this feeling of lethargy, and would love to feel like I did before I had MDS. This may be a stupid question , but does the blood transfusions make you feel better?

    Kindest regards
    Rachael

    #22562

    Zoe
    Member

    Hi Rachel and welcome to the group. I think I have seen your posts on the Aussie board. I am not a member since I live in the US, but I lurk.

    I am also 5q, diagnosed at 47, not quite as young as you. Although when the anemia is bad enough there are no barriers. Brain fog, exhaustion, I have both tonight.

    Aranesp is doing a decent job for me right now. Though I just went from around 10 to 9 (or 100 to 90 depending on how you figure). I am hoping an early bedtime will help out. No Olympics for me tonight.

    I did read a study out of Germany that younger patients with isolated 5q- were still doing well after 30 years. So, yes, management is more challenging because we are likely to have many transfusions, but at least we don’t have as many of some of the other problems statistically. I have the article if you are interested.

    I haven’t had transfusions yet, so I can’t answer your transfusion question personally.

    Zoe

    #22563

    maggiemag
    Member

    Hi to all. I am not as young as you, Rachael ;-), but I do have the same thing. I have not needed any treatment yet either. It is annoying not knowing when/if it will progress. I will be having monthly CBC’s from now on.

    Kenneth, did you have all your chromosomal changes when you were diagnosed, or did you progress from low risk to intermediate and add them? That’s the kind of answer I was hoping for in my recent post. I also have the mild myelofibrosis. Do you remember what % of your marrow cells showed the chromosomal changes? I would sure like to predict the rate of progression! But I am grateful to be where I am now and not worse.
    Mags

    #22568

    Rachael
    Member

    Hi

    Thank you for kind responses. Seeing the specialist on Monday, results will be interesting as I have had two lots of bloods taken, one before seeing the Nutritionist and one after. Presently I am on a concoction of tablets (given by the Nutritionist) – detox tablets/tablets to remove lead from my blood/ B12, and a powder called Ambrotose. Ambrotose supposedly can help you from ever needing a blood transfusion. I’ve been on the tablets / powder for about three weeks, my energy has not improved, but curiously I can do more rigorous exercise. I pay the price for exercising though, before I had MDS my recovery time was immediate, now it takes a good day to recover.

    I’ll reply to this thread once I see the specialist, crossing my fingers that my results are stable.

    Best wishes to you all.

    Rachael

    #22570

    Hey Rachael,

    I had 3 sets of packed red blood cell transfusions beginning immediately after my diagnosis in October of last year. At the time of Diagnosis my HCT was down from a low normal of 35 to 19.6. I was very fatigued. each successive transfusion reduced the level of fatigue and the cloudiness. But they only lasted 4-5 weeks then the effects wore off. (I do have a better appreciation of the Dracula legends now).

    The Revlimid has returned my HCT back to 37.5 this week and climbing at about 2 points per week.

    Gene

    #22571

    MaggieMag,

    My Chromosomes were as shown in my profile on initial diagnosis. I have only had the one BMB. My blasts were listed at less than 2%. I don’t think the % of cells showing the 5q an t(2,11) were listed altho’. I have seen a couple of recent abstracts from the Dec. ASH meeting in New Orleans that said that the t(2,11) was not that uncommon in association with del(5q) syndrome patients.

    I am interested to find out if the 5q has gone into remission thus accounting for the increased RBC #s and further if there is any change on the T(2,11) side as well. I will have to wait on the next BMB to find out. My Oncologist is not in a hurry to order another BMB and on the pain side, I agree but on the mental curious side I would like to know whats going on… u no?

    I am going to the International MDS symposium in Bethesda on March 11 and 12 and am excited to hear the latest and greatest there.

    PS if I had to pay the 9600 that my insurance picks up each month, I’d be dead in short order! My 200 copay is hard enough.

    Best wishes to you and Rachael,

    Gene in Virginia

    #22573

    jimkufis
    Member

    Hi Rachel. Jim Kufis here. I have had MDS for at least three years and last year I had 10 packed red blood cell (PRBC) transfusions (tx) for my anemia. Each tx was 2 units of blood and this take approximately 6 to 7 hours. The tx are painless and they did improve my RBC count and energy level. For me they lasted 3 to 4 weeks before I felt anemic again. With regard to Revlimid, I have been on Revlimid since last October and I have had a very positive response to this drug. Tx independent now. I do not have the 5q- karyotype but I do have 3(t,t). You can get the generic version of Revlimid from India via Canada Drugs. It cost approximately $266 (US) for thirty 5mg capsules. From my web investigations, Revlimid has been quite successful for people with 5q-. You may speak with your hematologist about this.

    #22579

    Rachael
    Member

    Hi

    It seems that crossing your fingers does not work to well. My specialist (private based) has now referred me to a hospital cancer ward for management. Blood results (Hb, RBC / WCC,Nuet) had dropped significantly enough to concern him and now I have to wait for an appointment to see a hospital specialist. You worry when they start discussing the BMT option. Feeling some what frightened, but I am sure that this is another hurdle that I can manage(or just plain have too!). I really wish that Revlimid was on the Australian PBS scheme as it would relieve some of the stress.

    Hoping for better luck.

    Rachael

    #22633

    I just got back from my last CBC (monthly now). I will have another BMB on the 3rd of May. Still improving. Hct now 14.0, WBC at 4.0 and Platlets at 247. I switched my Revlimid from 10mg daily to 10 mg. every other day 1 1/2 months ago and my whites and platlets started to increase instead of decrease immediately. I was very concerned about the platlets which were down to 132 in Feb. from my pre-diagnosis level of 350. My father died from a blood clot in his leg while taking cumadin (sp?)years ago (1981) and I have worried about that kind of thing ever since.

    I feel great but my oncologist is not pleased that I changed my dosage. He has called a meeting with me on Fri. I feel that the results speak for themselves but I imagine he will bring up the agreement with the drug manufacture that requires strickness and no fooling around.

    Jimkufis, I think we have something in common here. I remember you telling someone that you weren’t a model patient either, is that right?

    #22636

    jimkufis
    Member

    Hello Kenneth in VA. Jim Kufis here. From your CBC you seem to be doing great. You are correct in that I am not the best patient but I keep my Hematologist informed and we work together. He realizes that a lot of the treatments are trial and error in nature and we are just trying to find something that works. After I started Revlimid (5mg/day)in October my GI track become a problem and I reduced my Revlimid to 2 days on and 1 day off. This solved my GI issues and my Hgb went to 11.8g/dL and the WBC went to 9.7k/uL and the Platelets went to 854k/uL. I switched back to using Revlimid every day and after about 5 months my CBC gradually changed. The Hgb is now 9.8g/dL, WBC is 2.1k/uL, and the Platelets are 116k/uL. My Hematologists had me switch to 2 days on and one day off for the 5mg/day of Revlimid due to the low WBC.

    On another point, the cost of the Revlimid charged by Celgene is extremely high. I get mine from Canada Drugs for $266 for 30 5mg capsules. The drug is made in India but seems to work the same.

    I think we just need to keep a positive attitude and keep looking for a solution to this disease. I truly believe there will be cure and hopefully in our life times.

    #22648

    Hey Jim,

    I missed seeing your reply for the last week until tonight. Certainly didn’t mean to ignore you.

    I wonder, have you had a repeat to the BMB since you went on Revlimid in October? I have a repeat scheduled for the first of next month. If you have, were there any changes in your karyotype?

    I will be interested to see if Revlimid is just suppressing the condition or is changing the #’s… Most studys just say "transfusion independent" if the drug is sucessful but don’t go any detail that I have found.

    Thanks and good health to all,

    Gene in Va

    #22651

    jimkufis
    Member

    Hi Gene. Jim Kufis here. I have not had a repeat BMB but I see my hematologist next week and he may recommend another BMB. I feel OK presently and I am TX independent. From what I have read the Revlimid makes the missing q leg of chromosome 5 reappear. I have not read any reports about it affecting other chromosomes but I think it must have some effect on other chromosomes as I do not have the 5q- condition and Revlimid has improved my condition. It will certainly be very interesting to hear the results of your next BMB.

    #22699

    Hey Rachael,

    How did it go with your visit to the specialist at the end of February?

    Drop us a line with an update.

    Kenneth_in_Va

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