Starting my 62nd Cycle of Vidaza

[Owen Maguire]

Had my virtual appointment on Tue. My Hem/Onc who is on the lead transplant team was not available so appointment was with what in my day we called a Resident , but is now called a fellow ( I think short for fellowship) They work for 4 months with the top Oncologists before they are fully certified. I have had this happen a few times before when there has been no change in my blood work and nothing looks pressing. Actually It is refreshing as the fellow goes into great depth on your condition ( I do not have mutations), and did an update on the International scoring system ( I am on the border of low/Intermediate risk). She was also amazed that I was starting 63 Vidaza Cycle. Only disagreement we had was her suggesting we cut back my self injecting E Potin Alfa from every 10 days to every 15 days. Told her Dr Savoie and myself had discussed this and agreed with 10 days as Hgl was 115 and I was able to walk 3 kms without discomfort. Talked to her regarding similar treatment you are on. She said Dr.Savoie has two patient on this treatment but nothing further. Keep me up to date on how you are progressing.

Owen

[Heinz]

Hi Owen,
How differently our hematologists/oncologists and we decided regarding our therapies.
You have been on Vidaza for over five years now, although your MDS risk is still currently assessed as low/intermediate.
I had suspected MDS since 2001 and MDS/RCMD since 2010 , IPSS score 0.5, int-1 but remained on watch and wait until late 2019 when I was diagnosed with transition to secondary AML with up to 25% blasts.
Since then I was on Vidaza and for about 8 months my blood counts improved, then it steadily wore off.
Now, for the 22nd cycle Vidaza has been combined with Venetoclax, slowly increasing VEN from 50mg to 400mg in a weekly rhythm to reduce the risk of TLS syndrome.
I feel fine so far and will be happy to report back to you how the therapy is progressing.
All the best for you.
Heinz

[Heinz]

Hi Owen,
just read a very interesting article about the reasons for the very different efficacy of ven/aza therapy in de novo and r/r AML patients.
If you are interested in the topic, I would be happy to send you the link, preferably as a private mail.
I am now on a venetoclax dosage of 200mg (at 400mg max) with no improvement in blood counts.

[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.

[Heinz]

Hi Amy,
thank you for your sympathy and interest. I would have preferred to share the link as a pm but then just so with the warning to r/r-AML patients if they really want to read the article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7655603/

[Amy S.]

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

[Owen Maguire]

Sorry Heinz and Amy for being delinquent in keeping up with comment to your posts.My wife who has Demetia resides in a beautiful large Assisted Living up to full Care Facility. I am a member of the Care Giver and Residents Council and have been involved in setting up displays on 6 floors for the Holiday Season. I then spent most of my time with Maggie decorating her room with a small tree and ornaments that were special to her. She knows who I am ,but can not remember that her room is decorated so each time we come back to her room it is a new adventure.
I am sorry to hear there were no positive results to your treatment Heinz but in view of Amy’s comments am hoping for better results as you progress. I will download the article thread you sent to Amy when I am finished here. For me I finished cycle 63 last week and my schedule for cycle 64 is quite disjointed over the holiday season. The bruises on my stomach seem to be permanent now but the soreness continues to disappears after a week. Only thing new is the night sweats that I had when I was diagnosed and have been gone for a number of years have returned with abundance . Take care both of you and know that my thoughts and prayers are with you.

Owen

[Heinz]

Hi Owen,
my respect that despite your own illness you are still able to contribute to the Christmas decoration of the residence of your sick wife.
Regarding the bruises on your stomach, I wanted to briefly share my experience. I massage my puncture sites twice a day with “evening primrose oil”. After about a week the red “pistils” have disappeared but the massage continues. More precisely, my wife massages.
Are you aware of the oral Aza CC-486 Onureg? Maybe that would be an alternative to the subcultaneous injection for you?
I am also familiar with the night sweats. It comes and goes without me knowing why. On the other hand, I often have cold feet, so I often wear two pairs of stockings during the day and one pair at night. But these are not our real problems, are they?
Wish you all the best.
Heinz

Translated with http://www.DeepL.com/Translator (free version)

[Owen Maguire]

Hi Heinz

It appears that both of us have been using a similar routine with Evening Primrose. It is only in the past year that the brusing began remaining and has now become permanent. I spoke to my Oncologist about this about 6 months ago and her answer was that over time the stomach area has difficulty recovering totally from consistent irritation. I noted that a number of people in the U.S, have a port inserted and get the drug interveinisly. I brought this up with my first Oncologist who was a living legend in the Blood cancer field and had been fully involved in the Aza trials. The answer was a definite no as his belief was the best results were obtained by injection in the stomach. As far as I can determine in Canada a port is not used. As far as the oral Aza is concerned I understand it may have been used on a trial basis at the Tom Baker Cancer Centre in Calgary but has not been utilized at the Satelite Cancer Centres where I am treated 50 miles away. I believe that they are seeing me as somewhat of a guini pig because most people do not get to the point where I am with Aza Injections. Any further info on what is happening with yourself?

[Heinz]

Hi Owen,
I’m sorry if I’m giving unsolicited advice. You are obviously well advised. Maybe I am too critical when I question advice also for the possible economic impact. But enough of that.
Monday is my next blood test and definitely I will need another EC transfusion because I am barely resilient at the moment.
The following week I will start my 23rd cycle and I am skeptical about the development of my blood values. However, between my 23rd and 24th cycle the positive effect of VEN should start.
If not, I will then probably fall into the unfavorable group explained in the article of my link to r/r AML and venetoclax.
I will report back.
Best regards
Heinz

[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.

[Owen Maguire]

Hi Amy,
As I said in my last message to Heinz my original Hem/Onc who was involved in the original tests of Vidaza was emphatic that Vidaza be administered in the stomach. My present Hem/Onc feels the same way and I know that all persons receiving Vidaza at the Clinic I do, receive it by needle in the stomach. As far as any change in the cycle is concerned they look at how MDS applies to me. I am trilineage ( low Hem, WBC and Platelets). Just got my blood results for my Hem/Onc appointment tomorrow. Hem 115 WBC 1.7 Pla 95. I can already say that my treatment team will be happy , Give me a pep talk to keep on going and see you next month. The only change that took place about 6 months ago was a change in my self injecting of Epotine Alfa from every 7 days to 10 days as my Hem rose up to 124 and they were concerned it could quickly rise above normal limits. It has held at 115 for the last 3 months. I quite often feel like a juggler trying to keep my 3 difficenties
balanced without knocking one out of rotation.

[Heinz]

Hi Owen and Amy,
I would like to have your concern about the supposedly too high HGB value.
Just to make sure we are talking about the same thing, you mean by “Hem” the hemoglobin value, which should be in the reference range of 13.5-17.5 g/dL in a healthy person?
Does your current value Hem=115 actually correspond to 11.5 g/dl?
Just for comparison, my current values are:
HGB=7.2 g/dL, WBC= 1.3 x10³/µL, PLT=51 x10³/µL

I will be receiving only my second EC (erythrocyte concentrate) transfusion tomorrow and I find it interesting that you are injecting yourself with Epo. The goal is probably the same in both cases but what are the advantages and disadvantages of the two procedures?

Regarding my aza/ven therapy:
because the platelets recovered from 22 to 51, I today increased the venetoclax dose from 200mg to the intended maximum level of 400mg.
Then next week I will start my 23rd cycle of Vidaza.
Getting back to Amy’s question, because of the bone marrow toxicity noted on the BMB, the number of injection days was reduced to 4 days and the break between cycles was increased from 3 weeks to 4 weeks
and I am very relieved about that.

[Owen Maguire]

Hi Heinz and Amy

You are correct Heinz about interpretation of the values. You just move the decimal point. In Canada normal Hem is 137 – 180 (g/L) WBC is 4.0-6.0 (10E9/L)
Platelets 150-400 (10E9/L). Had my virtual appointment with the Fellow as she is called. I already had seen that my blood results were pretty much the same as last month so thought I would have my appointment with her rather than my Oncologist. As I said before they are quite happy with how I am holding my own. She returned to increasing the period between me injecting the Epotine Alfa and went into great detail about the possibility of blood clots and stroke. I let her finish , but as thorough as she had been in going over my history she had missed the fact that I have been on a blood thinner since 2012 because of A Fib. Amy I again raised the question of both using a port for Vidaza Injections and also going to the pill. The Fellow and my Oncologist had a discussion about this after my appointment last month and basically the decision was I have got to where I am with the present routine with basically a decent quality of life so let’s not tempt fate by changing the routine. I could not think of any rebuttal. As for you Heinz a bit of good news with the platelets so I will keep my fingers crossed as you move on to the next stage.

[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.

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