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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 6 months, 2 weeks ago.

Viewing 15 posts - 16 through 30 (of 44 total)
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  • #22700

    Jim,

    Got my 2nd BMB results back this week. Prior results show both the 5q- and t(2,11) on all 20 samples profiled. This time 14 were that way and 6 were normal (both the q leg and trans-location have disappeared on those 6 samples).

    Needless to say I am in good spirits. I have an upcoming appointment with the oncologist/hematologist to discuss the alternate day dosage at 10mg. He is conferring with his peers as well. That meeting is scheduled for end of June. I will maintain daily but you will be interested to know that since I have gone back to daily dosage first of April my platelets have once again fallen and are now at 99 whereas they had climbed from 110 to 160 between mid-Feb end of March.

    Have you had your 2nd BMB yet?

    Gene in Virginia

    #22701

    jimkufis
    Member

    Hello Gene. Jim Kufis here. I am very pleased to hear that you are doing well with Revlimid. With regard to the platelets, a reading of 99 k/uL is OK and not a big problem. My current platelet count is 97k/uL. Reducing your dosage of Revlimid to 10mg every other day may be OK and this may increase your platelet count. You may consider changing to 5mg a day. I am currently taking 5mg every other day and sometimes I can not remember if the day is an or off day.

    My hematologist says that I only need the amount of Revlimid necessary for red blood cell production and that this amount varies substantially from patient to patient. The major concern is not only production of red blood cells but the unfortunate side effect of Revlimid on Platelets and white blood cells.

    In my case my WBC has droped to 1.5k/uL and my nuetrophils have droped to 18%. This is a problem. The lowering of the Revlimid doesage has caused my Hbg to drop to 9.2g/dL which is lower than I like but the drop in Revlimid dosage is to try to get the WBC up. If this does not work. Our next thought is to use Neulasta to kick up the WBC and increase the Revlimid to 5mg evey day to get the Hgb back up to the 10g/dL level. If the WBC does recover at the 5mg Revlimid doesage every other day and the Hgb stays low, the plan is to keep the Revlimid doesage at 5mg every other day and use Aranesp inconjunction with Revlimid to get my Hgb back up. Of course this may or may not work.

    I have not had another bone marrow biopsy but I will ask my hematologist about this. He apparently does not think this is necessary at this time. But if I ask about it he most likely will do it. The other concern is that the Revlimid may stop working. I have read postings from MDS patients where the Revlimid has stopped working. I do not know if the cause of this is due to a progression of MDS or the immune system rejecting the Revlimid. On the bright side I have also read reports of patients having continued success with revlimid after 5 years of continued usage.

    #22702

    Rachael
    Member

    Hi Jim / Kenneth

    It’s been awhile since I posted. Two weeks ago my Hb dropped enough to have my first blood transfusion. The specialist is concerned with all my blood results and now I will be having a bone marrow biopsy to check for cytogenic changes. The plan is to start taking Revlimid within three months. I’m hoping that my private insurance helps with some of the financial costs as it is not approved in Australia for MDS. Being my age, the specialist is concerned about an iron overload issue, that’s why I think he’s trying to get me onto Revlimid.

    I’m generally exhausted all the time now. I can’t exercise like I use too and I get sick from anything that I don’t cook myself. The nausea before the transfusion was driving me nuts.

    Anyway, the next three months will go quickly and I hope the specialists strategy to bring my life back to normal will work.

    Rachael

    #22703

    jimkufis
    Member

    Hi Rachael, Jim Kufis here. If you have problems with the cost of Revlimid. Seriously look into getting Revlimid from Canada Drugs. You can find them on the web by just doing a search on Canada Drugs. I get Revlimid through them and 90 5mg capsules cost about $780. This drug comes from India and I have been using it for approximately 5 months. It works the same as the Revlimid from Celgene. Ask your Hematologist about it. My hematologist had no problem in providing a prescription. Last year I had PRBC transfusions which gave me iron overload. This was fixed by using Exjade from Novartis. Since I have been transfusion independent since last October, the need for Exjade was only for a few months. Transfusions are painless and you get an immediate improvement in energy. For me they only lasted for 3 to 4 weeks before I needed another transfusion. Revlimid took care the need for transfusions by increasing my Hg.

    #22704

    Rachael,

    I just finished reading an article from the MDS-foundation stating that 40% of all people with MDS experience anemia. That’s what got me to the hematologist in the first place last year. I didn’t have reason to believe that any of my other blood counts were low as well until I began feeling short of breath. I had a BMB following the first CBC at their office and that’s where the del(5q-) was discovered and the Revlimid followed. Looks like Jim has responded well to it and I have, too.

    Jim has been getting his thru a Canadian Pharmacy, I believe. My insurance pays all but $200 a month. I think I remember the price through one of the online pharmacies in Canada was about $250 per month (not sure of the concentration as to whether the price is for 5 mg or 10mg). Hopefully you will be able to use one of those because the stuff is currently being billed to my insurance at $11,600/mo. after my $200 co-pay.

    Good luck on the Biopsy. I found that if I joke my way through them they don’t hurt as much! Plus it confuses the Docs 😉

    #22705

    Rachael
    Member

    Hi Jim

    I checked Canada Drugs. Revlimid was costed at $9000.00 for thirty tablets. This is the equivalent cost to what we have to pay in Australia. I couldn’t find the other option you discussed (90 tablets for $780.00). I would appreciate it if you could kindly post the brand name of the drug you were getting from India. I will definitely ask my specialist about this cheaper option. I suppose I have to ask one key question; If this version is safe, works and is cheaper why isn’t being used as the primary drug of choice and not Revlimid (Celgene’s product)? Maybe it’s illegal to import or use in Australia.

    It’s great to hear that the drug your on has made you transfusion independent.

    I hope you are well.

    Best wishes
    Rachael

    #22707

    jimkufis
    Member

    Hello Rachael, Jim Kufis here. I just went to http://www.canadadrugs.com and entered Revlimid in the drug search box and got a quote for 30 capsules of 5mg Revlimid (lenalidomide). The price quoted was $266.15 USD. For 30 capsules of 10mg Revlimid, the price was $451.32 USD. This drug is made in India by Natco Pharma.

    I have been using Revlimid (Natco calls it Lenalid)since February 23rd. My current dosage is 5mg every other day and this seems to be working OK. My platelets have improved to 137k/uL and my Hgb is 9.4g/dL. My WBC count is 1.7k/uL which is very low but improved from two weeks ago when it was 1.5k/uL.

    The only bad side effect I have is occasional diarrhea which is controlled with Imodium-ad. I feel fine and I am transfusion independent since last October. My energy level is OK but not as good as when my Hgb was close to 12g/dL.

    #22713

    Rachael
    Member

    Hi Jim

    Thank you very much for the above information. I emailed this information to the specialist today.

    Rachael

    #22714

    Rachael
    Member

    Hi Jim
    I received a response from my specialist today he commented that it’s definitely a lot cheaper, but stated there is no way to tell how pure these copies are. He is also confirmed that it is illegal to bring them into Australia because they need to be approved by the TGA. Revlimid is registered and approved here by the TGA. Revlimid has been approved by the PBS(Pharmaceutical Benefits Scheme)for Myeloma patients.

    TGA stands for the Therapeutic Goods Administration and is a “Commonwealth Government agency that regulates medical devices and drugs. Prescription medicines and over-the-counter medicines which meet Australian standards of quality, safety and efficacy are included on the Australian Register of Therapeutic Goods. Medicines may be registered or listed. Registered products are thoroughly evaluated and are labelled with an AUST R number…” TGA website

    So it seems this generic version would need to pass two government approval bodies (TGA and the PBS) before it would be used in Australia.

    Not that this above information helps me much. I’m still waiting for approval from the insurance company.

    Kindest regards
    Rachael

    #22715

    jimkufis
    Member

    Hello Rachael. Jim Kufis here. The Revlimid I get from India works just fine. Here in the USA it is not approved by the FDA but that does not bother me. The excessive price that is placed on Revlimid here is unconscionable and the Indian drug is an excellent alternative. This drug is a modification of Thalidomide which has been produced for more than 50 years and is easy to make. The Indian drug industry is quite safe and over 25% of the generic drugs consumed in the USA come from India. We should not need to sacrifice our financial health for our physical health.

    #22716

    Rachael
    Member

    Hi Jim

    I agree with your comments above. As MDS becomes more of an issue I think our governments will have to "think outside the box" and look at these generic versions. I’m so glad that you can still bring it into America and be able to live a decent quality of life. I’m OK at the moment and am coping with the fatigue. I haven’t given up and am still hoping that the insurance company will pay for it. In the end Revlimid may not even work for me and so I face the challenge of uncertainity (as we all do). I think the sad part of having MDS is knowing that other MDS patients unfortunately lose their lives to this dreadful disorder because of a lack of funds, no trials or beacuse of age. In Australia, BMT’s are not given to those over 65(unsure of exact age).

    I’m on a couple of forums and it really makes me happy when I hear others are in remission or have successfully got through their BMT’s. It gives me hope.

    Rachael

    #22749

    Rachael
    Member

    I received some great news today in the post. My medical insurance has approved (from their special purpose fund) Lenalidomide (Revlimid). I cried when I read the letter (I know that sounds pathetic). The guilt of having to put that financial burden on my family was too much for me. Now I can move on and put all my energy on making sure that Revlimid works for me. I see the specialist next week and am having a BMB the week after. Then I have to meet with the drug company.

    Rachael

    #22750

    Anonymous

    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.

    #22752

    Rachael, I am really glad to read that you have gotten approval from your insurer to assist with the cost of the product!! YiPee.

    Now hope it works for you as it has for others of us on the forum.

    By the way, Celgene, and Diplomat Pharmacy (speciality phamracy that supplies Revlimid for me) have financial assistance funds that can offset part of the cost for co-pays, etc. Unfortunately I couldn’t qualify due to income level. Wife and I both still work. But you should look into it. Also there is assistance available from the Leukemia Society. Both Celgene and the Luekemia Soc have surveys and forms to fill out but there is help available there.

    Have you heard anything on the BMB yet?

    Good luck with everything.

    #22753

    Hi FSEOER2010,

    I’m guessing that you are directing your question about the T(2,11) to me as I think I’m the only one is this thread with that and Del(5q) so I’m responding.

    The last biopsy showed that the chromosome abnormalities had disappeared from 6 of the 20 specimens studied. Those 6 were normal! The remaining 14 specimens still showed the same 2 abnormalities: deletion of portion of the long arm of chromosome 5 between q22 and q33 and trans-location of p21 and q23 between chromosome 2 and 11.

    Most literature I have read indicates that the response for the Del(5q) is somewhat normal but I have not seen references to the fact that other anomolies like my additional trans-location can also be affected by the meds.

    I hesitate to use the word remission, because it hints at a temporary cure" but if you can define remission as a positive change and return to felling no fatigue… I will agree to that. The other definition gets my hopes up and my oncologist is quick to remind me that the only known cure for MDS is a BMT.

    On my CBC 2 days ago my hemoglobin was 14.0, WBC was 3.8 and platelets were 122. This is 8 months since I began Revlimid. I feel great. Thanks for asking.

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