[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

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.

[Amy S.]

The Venetoclax is very effective but the dosage is tricky. I was on azacitidine for 3 cycles with no effect. Then the doctor added Venetoclax. After a month, my biopsy showed the blasts reduction but my blood counts dropped to very low number. Eventually, he reduced the Venetoclax dosage by 75% and also shortened the length when it was taken. My blood counts improved and have been normal for several months. I think you can googled “ventoclax” or its brand name “Venclexta” and should get many hits on the manufacturer’s site.

[Amy S.]

Hi, Diana and Barbara Hunter,

Thanks for all the information. It was helpful. I have not seen any posting on this for a long time. How are things doing ? Were the blood counts normal after the vidaza schedule was changed from a frequency of 3 weeks to 6 weeks ? I am in a similar situation. I have been on Vidaza for 8 cycles and the last several cycles had normal blood counts. I wonder if I could ask the doctor to switch to a 6 week cycle ? Thanks for any information.

[Amy S.]

I assume that you are aware of the webinars offered by MDS Foundation. See this link https://www.mds-foundation.org/?s=webinar

There is one “MDS Therapies and Options 2020” on 8/8 that might be informative.

[Amy S.]

Emily was right and very lucky. I was in the same situation with no caregiver or social support. The doctor in the transplant center did not consider me a transplant candidate. Together with the fact that there was no match in the repository and my sister was only 50% match, He told me to go with the chemo treatment. He said that if I responded to the treatment, then do not do the transplant because I would be a very sick person for at least a couple of years after the transplant.

[Amy S.]

Thanks for the advice. I was not considered a transplant candidate because there is no match in the repository. My sister is only 50% match and lives in another state. The doctor said that I have no social support.(?)

[Amy S.]

I was on Vidaza since last December. For the last 2 cycles ( June, July), all my lab numbers have
been normal. I asked the doctor if I could discontinue treatment or on a less frequent schedule ( perhaps 5-6 weeks instead of 4 weeks). He said it would run the risk of a relapse and continual treatment would lengthen the remission. I do not know what to do? Should I ask a second opinion ? Has anyone discontinue treatment after remission and is OK?

[Amy S.]

The effects of treatment vary with individual. Some people tolerate it very well, can live a normal life and go into remission. You never know until you try. People who go into remission may not take the time to post in the message board. Just my guess. There are research/development going on all the time so a better treatment or cure may come up in the future. You want to be alive when that happen. Meanwhile, stay positive, focus and direct the positive energy inside your body. Try a health diet and eat only organic food.

[Amy S.]

I believe the webinar said that dacogen in pill form was approved to treat AML. But dacogen in pill form was NOT approved to treat low-risk MDS due to toxicity. I hope my understanding was correct and vidaza’s review is still in progress ?

[Amy S.]

Thanks for sharing all of your experiences with vidaza. I was diagnosed with MDS with high risk blasts last November and have been undergoing vidaza infusion since December. On the end of 3rd cycle, he added venetoclax orally for 4 weeks, and my blasts (in BMB) went down to 6%. But my blood counts went way down, I was told that one of the side effects of Venetoclax and Vidaza was low blood counts. He delayed the 4th cycle due to low blood counts. Eventually in the 4th cycle, I took venetoclax for 2 weeks. My blood counts went up a little. Then in the 5th cycle, he put me on venetoclax only for 7 days and the blood counts went up a little more. it appeared that the bone marrow needs time to recover and to rid of the toxicity of the venetoclax/vidaza treatment. So perhaps patience is needed during treatment. I will be seeing the doctor next week and will know more. BMT may not be option for me because there is no match in the repository and my sister is only 50% match. The doctor said that with my age and 50% match, there is great risk and I could end up being very sick for 2+ years after the BMT. He said if there is response with vidaza/venectoclax treatment, then do not undergo BMT (?). I hope everyone on this message thread will get to remission with the treatment. Thanks very much for the information on oral vidaza. Stay safe and positive !

[Amy S.]

Hi, Susan,

I was also diagnosed with MDS about 6 months ago. I am currently under treatment. Would you share information on the herbal and acupuncture protocol that help to improve your condition? Thank for any information.

[Amy S.]

Sorry I click submit too soon. Even though medicare decline Venetoclax, the pharma company offered some discounted or free program depending on a case by case basis. You can goggle “Venetoclax Access Solutions” and look up the search results. I had tried to post the actual link but the system would not let me. Sorry.

[Amy S.]

Thanks for sharing. I also have MDS. Please post when you find out more.

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