[Amy S.]

Thanks Kathie for sharing. Your husband is blessed to be in remission. May I ask if he is still on Vidaza since 2017 or is he off medication and is under monitor only? I am asking because I am thinkg of stopping the vidaza treament after a remission. Thanks very much for any information.

[Amy S.]

Yes, Kate Farrell may be correct. I have been on Vidaza intravenously for a while and the doctor also gave Zofran as pre-medication to prevent nausea. I had constipation then. After he switched to subcutaneous injection without Zofran, I have no constipation. And injection is much faster than IV. In and out in 15 minutes.

[Amy S.]

Thanks for sharing. I am also interested to know about effects of hip replacement while on Vidaza. I am on Vidaza and have had hip arthritis for many years. Vidaza treatment seemed to aggravate the hip and orthopedic surgeons recommend hip replacement. I am hoping to void the surgery by having steroid injection into the hip joints. Did the hip replacement change your blood counts afterwards ? Malissa, thanks for sharing the info on your husband surgery. Hope the counts will improve soon.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

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