Change of treatment

[doris33]

Thank you so much for your response. WBC was 116 but platelets had dropped to 32. This prompted change in treatment to Obinituzimab and later transition to Venetoclax. Really concerned about possible side effects.

[PlanetaryKim]

How are you doing now Doris? Have you started the obinutuzumab?

[doris33 in reply to PlanetaryKim]

Hi, thank you for asking. Have had 4 treatments of Obinituzimab. WBC fell to 9 from 116. Platelets still low. Feeling pretty bad, fatigue, nausea, dizziness. Do not want to take anymore of that medication, but may have to. Don't think local oncologist has had much experience with transition to Venetoclax and don't want to go back to MD Anderson right now.

[PlanetaryKim in reply to doris33]

You do want to make sure you are in good hands for the venetoclax ramp-up. It might be worth the trip to MD Anderson? Although I know these choices are hard ones now with pandemic.

My own venetoclax ramp-up in February was uneventful and went fine. But I was very closely monitored with a pretty rigorous schedule for blood work, down to the precise time the blood had to be drawn. And I couldn't increase my dose each week until I got call from pharmacist saying I was cleared for take-off. However, I did it all as an out-patient, not in hospital at any point, and I didn't require any additional intervention of any sort (like electrolytes or saline IV).

I hope it goes well for you! Sorry the obinutuzumab has you feeling crummy. I think that will pass.

kim

[Canuck901 in reply to PlanetaryKim]

Great to share your ramp up experience, looks like my dad will be on Venetoclax soon , most likely starting next week

[PlanetaryKim in reply to Canuck901]

Great! I hope that goes really well for him.

[Canuck901 in reply to PlanetaryKim]

I hope so too , hope the side effects are less than the. BTK drugs

Even if the 400 is to much 300 should be fine for him

[PlanetaryKim in reply to Canuck901]

Was your Dad on BTK first? From everything I am reading most people have few to no side effects from venetoclax. Same cannot be said for ibrutinib (although I was not bothered by much on ibrutinib except the afib).

[Canuck901 in reply to PlanetaryKim]

Where you ever on the full dose of Venetoclax? Are you still taking beano?

[PlanetaryKim in reply to Canuck901]

I was on 400 mg for a week or 2. I went down to 300 when my neutrophils fell. I would be happy to go back up to 400 mg if doctor thinks it's a good idea. But he may not at this point. May want to just keep me cruising on 300 because neutrophils are borderline (1.9).

I don't seem to need the beano any more. Have been moving to a lower-carb, non-gluten diet. Learned to bake low-carb keto bread with almond flour and psyllium husks. Would be keto diet but I eat too much fruit to qualify as keto. Also looked at the FODMAPs lists and followed that to some degree. All of those things seem to be helping.

[Canuck901 in reply to PlanetaryKim]

That’s excellent Kim , thanks for sharing

Where do you get low car. Keto bread ?

Do yuh at more fish and chicken less red meat ?

Goat milk seems to be good as a natural probiotic.

[PlanetaryKim in reply to Canuck901]

I have just started baking the low-carb keto breads. They are very easy to make. I have been warned off of buying store-bought versions - apparently other things in them.

This is the recipe I started with - Keto Low Carb Seed Buns With Psyllium Husk. It's super quick and easy: mypcoskitchen.com/keto-psyl...

This next one makes an actual loaf of bread that is good for toasting, sandwiches, whatever. And it uses "cauliflower rice" (riced up raw cauliflower) along with almond flour, psyllium husk and eggs: paleogrubs.com/low-carb-cau...

[Canuck901 in reply to PlanetaryKim]

Excellent I will try some of those.

There seems to be a lot of data on Venetoclax and food . Having a low fat or high fat meal with Venetoclax makes it more effective

The results showed that single dose of venetoclax with high-fat meals increased venetoclax Cmax and AUCinf approximately 4-fold compared to single dose under fasting condition.”168

accp1.onlinelibrary.wiley.c...

[PlanetaryKim in reply to Canuck901]

Yes, something similar with ibrutinib - a 2-fold increase in IBR absorption if eaten with meal vs empty stomach and no food after. I think it has to do with stomach acid. More stomach acid = more absorption.

This reminds me - I totally forgot to take my V last night!

[PlanetaryKim in reply to Canuck901]

I eat land animals mostly because I have never been a huge fish fan. I do source my meat very carefully, talk to the farmers actually raising the animals, sometimes even visit their farms. I have just discovered a local farmer who raises forest-raised pigs using regenerative agriculture. I will be trying his pork next week for first time. And I am already eating his chicken, which is great. I eat free-range grass-fed beef and lamb too.

An interesting book, which isn't a Keto book per se but really got me embracing my body's natural food choices/preferences, is Eat Right for Your Blood Type by Dr. Peter D'Adamo. I am Blood Type O, the Meat Eater. And indeed, meat (and animal fat) is what my body has always craved when I have been at my very sickest - succulent organic free-range non-GMO chicken drumsticks.

I'm not sure if goat milk is probiotic unless it's fermented into something? But I don't know. I certainly enjoy goat milk and use that exclusively.

[Canuck901 in reply to PlanetaryKim]

Cool thanks

Have you done the ketsosis strips yet to verify you’re in that realm. ?

Sounds like it’s working great for you

Well done

All natural food and low carb seems to be very beneficial and of course no added sugars

[PlanetaryKim in reply to Canuck901]

I haven't done any ketosis test... and I may not. I know the goal of keto diet is supposed to be ketosis. But that is a little to obsessive for me honestly. I want to eat what I want to eat... but i want to identity and remove foods giving me problems. that's really how i got into this - i wanted to end the awful post-meal bloat problem that was not only miserable but was a major contributor to my continuing afib issues i believe (which I have not had for 2 weeks now).

so this diet shift really started as part of my afib management strategy. to go full-on keto, i would have to limit myself to one piece of fruit daily (probably only berries). I would have to halt potatoes (I love boiled potatoes with butter). So i will probably never achieve ketosis, even though I have the keto insomnia. haha! but i have made great improvement on the bloat problem - and seem to have lost 5 lbs, which as far as I can tell had been entirely parked on belly, nowhere else. that was not helping with the bloat issue and it is now gone. may have been fluid retention. I always thought that extra 5 lbs above my normal weight was from the ibrutinib.

[PlanetaryKim in reply to Canuck901]

The problem I am having with keto since I have just started down this path of eliminating carbs, is keto insomnia! This is a real thing that articles are written about. When we remove or dramatically reduce carbs, our brain does not produce serotonin and melatonin as readily. yikes! i'm trying to figure out if that's just going to be a temporary effect, or if this is part of the keto package. because that would be a deal-breaker. It also has an energizing effect though - the reduction of carbs and increase of protein and fat. I'm not sure I have actually increased my protein and fat very much. I think I have more just reduced carbs and eliminated gluten. But I feel more alert - a little wired and hyper even. And cannot sleep at night. haha! have been doing this about 2 weeks now - the carb reduction and no gluten thing.