MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 29 total)
  • Author
    Posts
  • in reply to: Dentist #57277
    Amy S.
    Participant

    I had extractions of a tooth root with a dentist while I was under treatment for MDS. I had no issue with the extraction. I informed my oncologist of my extraction and I also told the dentist my MDS condition. The oncologist told me to schedule the extraction midway between the treatment cycles. To be safe, check with your doctors : oncologist and the dentist. Hope everything will turn out well.

    in reply to: Starting my 62nd Cycle of Vidaza #57150
    Amy S.
    Participant

    Happy new 2022 to you all. Thanks you Owen and Heinz for sharing your treatment information. My initial numbers before treament were worse than yours( to be exact WBC:0.9, RBC:3, HGB:10.7, ANC – Neut: 0.28, platelet: 198). I shall try to describe my journey. Sorry, not know enough to have deeper insight. Also since everyone’s response is different, please just take it as a reference. A nurse told me then that counts were just numbers, what was important was how you felt and they were interested in watching the trend rather than raw number. In my case, after 3 cycles ( 1-Feb) , the numbers got little worse and so we started Venetoclax. At first I took it every day ( 100mg) with antibacterial, antifungal and antiviral drugs. After 3 weeks, the numbers were worse so my treatment was stopped for a month. Then they did a BMB (bone marrow biopsy to see if blasts had improved), then back on with ven for 2 weeks only. I was never on 400mg venetoclax but 100mg. The dosage might be based on interaction with other drugs that you are taking and might be based on your build. I am of small frame. Wish you and Owen best of luck in your treatment with Venetoclax. Starting next cyle, I shall be on an every 6 week cycles instead of 4-week cycle ( ie. 5 weeks in between cycles instead of 3 weeks in between cycles). Hope it works out. Thanks.

    in reply to: Starting my 62nd Cycle of Vidaza #57104
    Amy S.
    Participant

    In the lab where I get my blood test, the normal range for WBC is 3.6-10.5, Hem is 12-15.2 and platelet is 140-375. I suppose different labs have different normal ranges and standards. As long as the doctor thinks it is OK, then it is normal. Your doctor is right, since the routine treatment works then why change. To answer Heinz’s concern, my problem was more with low WBC rather than HGB or platelets. Before treatment, my WBC was around 1.0, HGB around 11 and platelets around 200. After a few cycles of Vidaza,they added venetoclax ( 1 tablet/day for 4 weeks), then my WBC went down to 0.6, HGB 7.9 and platelets 96. So the doctor stopped all treatment for a month ( I guess to allow the body to recover). And he changed venetoclax to 100mg/day for 14 days only (i.e. took Ven during the week of infusion and the following week only). Then my bloodwork started to improve gradually and eventually back to normal. My point is it needs a lot of trial and error. Have confidence with the doctor and stay rested, avoid crowds/infections during the week of treatment. Think positive and live a healthy lifestyle. THanks for sharing. Good luck and have a blessed Christmas and happy holiday.

    in reply to: Starting my 62nd Cycle of Vidaza #57028
    Amy S.
    Participant

    Thanks for sharing the issue with the injection site of Vidaza. I get my Vidaza via intravenous drip feed (IV) through the veins. I am on the 26 cycle and do not have any issues yet. I am not sure if it is the best way because it takes 15 minutes for the medication to go in and with other premeds, each session takes 30 min to an hour altogether plus waiting time. Perhaps ask the doctor if IV is an option. On a separate note, during the 60+ cycles, have you or the doctor considered lengthening the time between cycles e.g. instead of every 4 week cycle, do it every 5,6 or 8 weeks ? Then that leaves more time between cycles to do other things.

    in reply to: Starting my 62nd Cycle of Vidaza #56914
    Amy S.
    Participant

    Thanks for the link. Sorry, I have to figure out how to pm.

    in reply to: Low risk patient on HMA #56904
    Amy S.
    Participant

    I am on HMA treatment (Vidaza). I am not sure if I am low risk or not although my initial blood counts a bit higher than some other postings. I have been under treatment for almost 2 years and it was effective to get me normal numbers. There are other postings in this forum about on HMA treatment for over 5 years.

    in reply to: Starting my 62nd Cycle of Vidaza #56903
    Amy S.
    Participant

    Thanks Owen nd Heinz for sharing their journey. They have been inspring, encouraging and helpful. May God bless you both. I am also on the duotherapy of Vidaza abd Venetoclax( 100mg), and so far my counts are stabilizing. I am very interested in the article. Could you also send me the link? THanks.

    in reply to: Scheduling Third Cycle of Azacitidine #56902
    Amy S.
    Participant

    In my case, there had been several cycles when the doctor delayed the treatment for 1 or 2 weeks because I had to travel. That happened after my numbers ( blood counts etc.) were stabilized. Also at the first several cycles, my blood counts went way down due to side effects of the drugs and they delayed the cycle until my blood counts went back up a little. For me, there was no drug or health issue. Nest to ask the doctor about this.

    in reply to: IPSS and WHO scoring system #56698
    Amy S.
    Participant

    Sorry to hear of your diagnosis. Did you have a Bone Marrow Biopsy (BMB)? BMB will tell for sure if you really have MDS or some other health issue (eg. B12,B6, iron deficiency or even viral infection has similar symptoms of low blood counts).Perhaps seeing a doctor in Center of Excellence can confirm your diagnosis.

    in reply to: Drugs to teat MDS #56695
    Amy S.
    Participant

    I believe if the drug is delivered via IV or injection, it is considered as part of the chemo treatment and is covered by Part B and not by the Part D drug plan. FOr example, in my case, I got Azacitidine (Vidaza®) via IV infusion, so my part B covered it and I never use my part D. I do not know about the oral Vidaza (e.g. INQOVI). To be sure, I suggest asking the doctor what drugs or treatment method he/she plans to use.

    in reply to: Starting my 62nd Cycle of Vidaza #55739
    Amy S.
    Participant

    Thank you for posting your experience. It is very inspiring and encourages me to continue my fight against MDS. I was disgnosed high-risk in end of 2019. I am at my 23rd cycle of Vidaza. So far my blood counts are maintained to be normal and I believe I am in remission. I try not to think about my health problem most of the time but there are days that I am too scared and anxious to get out of bed. Your posting gave new insignt and very encouraging. After seeing you post, I started putting together my bucket list. Thanks again and happy birthday to you.

    in reply to: High Risk MDS & Venetoclax #54602
    Amy S.
    Participant

    I am so sorry for your diagnosis. I am on 12+ cycle of azacitidine and venetoclax. They help to stablize my blood counts. My counts are now normal and blasts down to <4% from a high of 12%. It took effects around 5th cycle but it is different for different persons. There is no bone marrow match for me so you are blessed to have a match. God bless and stay strong. Hope you can get the free or discounted venetoclax.

    in reply to: Arthritis #54375
    Amy S.
    Participant

    I also had arthritis before I was diagnosed with MDS. My doctor said Advil may lower the platelets and he prescribed celebroix (?). I also use Bengay extra strength on the joints to avoid taking anything orally. It seemed to help. Perhaps ask your doctor on what to take. Make sure you tell him/her all the medication that you are taking including over the counter supplements.

    in reply to: Start treatment when no symptoms? #54220
    Amy S.
    Participant

    Yes, the prior response is correct. Get a second opinion with a Centre of Excellence. I had low counts ( WBC=1.5, RBC=3.08 HCB=10.9 platelet=207) in the fall of 2019. I had no symptoms other than low blood counts and caught cold quite easily. Then the count went further down 2 months later and blasts up to 12%. He put me on azacitidine ( 5 days a month) and counts kept falling for a couple of months. Not until he added venetoclax to the mix and the counts started to improve to normal after 7 months of the treatment. All this time I had no symptoms. The only side effects for me were constipation ( fixed by laxatives), fatigue during the week of treatment. Currently my counts are all normal but the doctor said I have to continue treatment. Otherwise I will relapse. This is the issue that we discuss every time I see him. So far I am still in treatment. No other symptoms, have my covid-19 vaccine and carry on with my life as usual. If anyone has successfully stop treatment without relapse, please post here to let me know. Thanks in advance.
    Hope you find this helpful.

    in reply to: Discontinuing chemo #54139
    Amy S.
    Participant

    Do convince your husband to find second opinion in a center of excellence. Seeking a second opinion does not mean you do not trust your doctor. There are so many news drugs coming out every day, second opinion adds a new pair of eyes, another perspective. Nothing to lose. When I was first diagnosed with MDS, my hematologist welcomed a second opinion and suggested names for me to see. You have nothing to lose in a second opinion.

Viewing 15 posts - 1 through 15 (of 29 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert