Second Chemo Round- Not Quite There And No Stem Cell Transplant Option.

Hi Stu,

I'm in a similar situation.  I was diagnosed with AML Leukemia (after being in remission for Lymphoma for 9 months) and was scheduled to have a chemo regime using Vyxeos every other day for 5 days, then 7 weeks off.  

Can I just say that those seven weeks off were a bit hellish.  I was in quarantine, no visitors except medical staff.  They were worried I would fall (they had given me a cocktail of antibiotics that made me, indeed, woozy) so I couldn't even leave my bed without alarm bells going off. 

It's quite demoralizing to have to ask every time you need to use the toilet.  Even more so when you're numb from the waist to the toes with peripheral neropathy so you can't really TELL when you feel the urge...

After the 7 weeks I was allowed home.  We're in lockdown here in Minnesota, and contrary to what you've seen in the media, 99% of our state thinks the hare brained fools who protest in front of our governors mansion are idiotic.  This is not the time to lift restrictions, it's a time to wait for the curve to flatten.

I THOUGHT I'd be getting a stem cell transplant, that seemed to be the general consensus.  But after I was home for a few days I received a call from the bone marrow doc at Uof Minnesota telling me that I didn't quite make the grade on the scale that they use to determine who will do well with a SCT.

I was also told that once they pass me up for a SCT, I'm pretty much out of the running for good.  Being 58, and relatively healthy except for this cancer thing, THAT really threw me for a loop!

My husband had had a SCT in 2007 for Multiple Myeloma, he passed in 2018, 3 months into my chemo for Lymphoma.  

Today I returned to the clinic for my next round of chemo.  Once again, it's Vyxeos, this time at 3/4 the strength, and for only 3 days, every other day.  After a month to recover, I'll have the same regime again, then it's a wait-and-see game.

Hi Annie,

Sorry to hear about your husband. Losing someone just adds to the worry, eh? Got put on Venetoclax and aza combination. Like you, at home in lockdown. Feels like jail lol. 

The SCT thing is frustrating when you feel fit in yourself. I am going to try to return to walking (in safety) and get fitter, now I at home. My fingers and legs are crossed and will remain so for you (although walking is harder then lol). We are both close to remission and you never know.  I want the curve and my stomach to flatten, oh and my hair to grow.

You take care

Stu (Crewe, UK)

Well I am in remission and bloods currently back to normal. Talked with consultant today and SCT is out, as too risky. Venetoclax and azacitidine got me into remission and was told that it is better to carry on with that. Had no transfusion for months. All a bit surprised. It may come back, it may not. My aim is to create an environment where the AML doesn’t want to live. X 

This is good news and long May your remission last and you do keep it out of your environment

Thanks. Started my walking now. Managed 2 miles on Sunday. Feel alive when out walking.

Well done you ‘feeling alive’ is a good foundation to build on

Still here and in remission. Had boring (but welcome) normal blood count, before last round. Walking every day for 2021 (rain,shine or ice). Still have a stomach for them to inject but slightly smaller. 

Hi Potty12 good to hear from you and well done keeping your activity going. Let’s look for a less eventful 2021.

Ta Mike. I want a quiet 2021 and hopefully a holiday lol

Oh I second this..... and as we basically have had snow on the ground since before Christmas - a rise in the temperature