My latest CBCs etc on Besremi

[EPguy]

A bunch of us are posting our latest. Here's my summary.

-Past 5 Bes doses were 75,75,100,100,120.

-All the counts we watch are doing well. HCT= 43.7, down from 44.4 prior. This is likely from the dose increase from 75. PLT holding at 288, Neut slightly up at 2.5, in its normal fluctuations.

-My Dr said Hb is actually more relevant than HCT but because of how testing was done in the old days, HCT is the reference. I told him I learned here that Euro looks more at Hb, he also knows that. But there is no standard to limit Hb so we use HCT.

-Lymph is under range at 0.93 and trending down. I asked Dr about it (MPN specialist) he said no worries on Lymph blood levels because we have large and redundant sources in our lymph nodes (makes sense) and in the spleen. He has lymphoma patients with zero blood Lymph but they have no issues with infections. But he did say Neut in blood does matter because there is no back up source for that.

-CMP was max boring with all the important ones stable and near center range and others in range. My creatanine (a kidney thing) has long been upper in range, but it's not changed so nothing exciting.

-One high value was glucose, reasonable since it was non-fasting but priors were in range. I looked it up and high stress can add glu. I was max stressed expecting very interesting results. I've also had an eye issue that is getting better on its own but I have opth Dr booked (again). MPN Dr said he's certain eye Dr won't find anything. Hoping eye Dr agrees. Enough trouble here can nix my INF journey.

-I posted plots here of some bloods that Drs don't really care about, but these go high with HU. It shows INF puts them back in range, after 5 months on Bes (and off HU) here. Some of the other no-care bloods are trending same. Dr said these would improve but would stay high on INF; it seems otherwise, but it's not a medically important issue.

-As Hunter says we wish to be boring patients.

-I'm taking NAC (N-acetylcysteine) and bioavail Curcumin. Dr says no worries on risk for these but also he doesn't think it's any help. I'll take possibly good if risk is ok, and might be helping some INF side effects. -- Curcumin in rare cases can make liver trouble so you do want to watch the CMPs. Interestingly in the relevant reports, they used NAC to help this liver trouble. NAC is known to save liver on tylenol (paracetamol) overdose and is FDA approved for that.

-I seem to respond well to low doses, I also did on HU. But Dr is still set on packing it in. He wants me to reach 200mcg per two weeks eventually to try for allele (Jak2) reduction. I found I can hold CHR at 75, and I would choose ~100 on my opinion. The eye thing esp suggests min dosing. I posted last month about correlation of CHR to allele and that dose does not link to allele reductions. I will discuss this data more with him as he did not note any data supporting the higher dosing for non-CHR reasons.

[Emmyroos]

Looking pretty good! Thanks for sharing.

[hunter5582]

Sounds like things are trending in the right direction. Besremi seems to be the right course of action. I would agree with you about using the minimum dose needed for CHR. While molecular remission would be good, it is not the primary goal of treatment. Maintaining a high quality of life is my primary treatment goal. Extending life is secondary and only a goal when QOL is intact. That drives all treatment decisions.

Boring numbers are good. I would love to be more boring!

All the best my friend.

[EPguy in reply to hunter5582]

I so agree, QoL makes L worth keeping.

The reports I posted last month seem compelling that if allele reduction is to happen, it will correlate to CHR and adding more INF beyond required for CHR is not seen to increase odds of MR. At least three reports showed this- that is unusual to see such a pattern.

Basically as I see it MR is a common side effect of CHR. But this is a confusing mix of ideas since allele can happen with PR. With no HR it's less signif likely. Simplified it's just do what you're doing, best HR, and best odds of MR follows.

My Dr has not absorbed the message and seems to feel that best MR is highest tolerated dose, or even more, with no regard to CHR.

[Hopetohelp]

Thanks for sharing and glad it’s going well. Always able to learn something from your posts. Interesting hearing about glucose. Mine was up during our heatwave here in the uk which we brits don’t cope with very well. Thought it was too many strawberries 😂

[EPguy in reply to Hopetohelp]

You're getting triple digits in the quaint old deg F system. That will for sure spike the stress.