Losing weight constantly on Watch & Wait

[Fergusaims]

I'm 63, reasonably fit, & was diagnosed in late 2020 & following a bone marrow biopsy (85% infiltration) & review of my bloods, it has been decided to start treatment on O&V shortly. I was also diagnosed as Type2 diabetic at the same time as CLL.

My weight has fallen by 2.5 stone to 12stone, which is at least 7lbs less than I have weighed at my lowest in 30 years. The loss is a constant 1lb per week & while the intiial loss (to help with diabetes) was through dieting, I have increased my calorie intake to no avail.

My question is what experience do members have of how long it takes to put weight back on after treatment, as this is now starting to concern me. I have a pre treatment appointment with the specialist next Monday, but would be interested to hear from you wise folk. Also, when diabetes is thrown into the mix with CLL, there seems to be little help out there. Deal with what is causing you the most problems first is the common response.

[Shedman]

Treatments vary, but frequently some use of steroids is involved.. Once steroids are on board, and the treatment starts clearing high levels of tumour cells, the weight goes on rapidly [steroids make one ravenous and are indeed anabolic = body building..]

I switched from weightloss (lowest weight in 28 years) to my old weight in a very short time..

Right now, it might be worth knowing that dairy foods are a likely way to gain weight, but mostly it is seen that a balanced diet is the wise route; likely want to make sure of healthy protein intake and healthy fats [I say: butter, coconut, olive oil, animal fats.. and avoid seed oils — opinions may vary], and a good component of green veg etc.

Do you know your neutrophil level? Low level can be deemed neutropenia and presents a high risk of infection.. during such times it is wise to take food precautions:

- cooked is safe

- where some cheeses/cold meats may contain listeria = unsafe

- fruit you can peel may be okay, but mostly it is time for safely cooked things to minimise risks.

Do you have a thermometer and oximeter at home?

It is helpful to monitor stats a little through treatment.. this is so that we spot a slight raised temperature and contact our treatment team for advice..

..sepsis is the danger that arises rather quickly, so where we might not notice, a thermometer does not lie... and heart rate is another helpful indication.

Are you actually an unhealthy weight, too low, or simply not used to being so light? It can be disconcerting when clothes don’t fit etc.

Difficult to gain weight easily whilst controlling carbohydrates due to diabetic issues.. having snacks to hand might help? Seeds, nuts, more butter on any slice of bread.. more cheese..

Do you know which treatment you will be starting?

[Fergusaims in reply to Shedman]

Thanks Shedman, Appropriate you respond first, as I sit here in my shed office.

My neutrophils are at 6.5, WBC 110, Platelets 96 (up from 74 month previously).

I'm due to take Obu & Ventoclax, shortly. Good to hear your weight came back quickly & then I suppose it is a matter of trying to maintain something like ideal, which would be a gain of 10lbs. I have probably about 2 months to treatment & at the rate of 1lb a week that's another half stone loss, which brings me into the level I was in late teens.

Thanks for the dietary advice. I've just been informed that I am no longer Type2 diabetic, being relegated to Pre Diabetic today, so that's good, but you're right controlling carbs helps the diabetes & helps keep the weight down. Ah well, there's always beer to fall back on, now the pubs are open again!!!

[Shedman in reply to Fergusaims]

I recommend a 85-90% chocolate habit.. though it takes some acquiring, a 100g bar is ~550 calories, ~20g total carbs, ~55g good fats!Just watch out for the fibre hit.

The combination of fats with carbs helps deliver weight gain — you know what to do! [if steroids occur, the resulting appetite is something to witness.. my doctor kindly suggested my later weight indicated a “steroid over-run” as opposed to simple acquired greed!]

I’ll trust you are up to date with all CLL vaccinations pre-treatment?

Remember that worry can lose a few pounds.. But it is so very odd dropping weight this way, and reason for concern — to keep your doctor/treatment team informed; they like to have a robust patient at treatment time, one with something to spare!

Great news of diabetes, though losing so much weight will do that!

Good treatment combo; the best of luck with the outcome.

[Fergusaims in reply to Shedman]

Until last Sept, I was a heavy drinker and have cut that by 85%. Apart from that, I don't have any vices, no chocolate, no added sugar, no cakes or snacks, eat lots of chicken, salmon, pulses, veg, no red meat. Heck, put down on paper that makes me seem too good to be true. I'm going to go out there and get me some vices!!

O&V has impressed me from what I have read & it has been interesting (right word??) to read posters experience while they are undergoing it. Bring it on.

[Shedman in reply to Fergusaims]

What do you eat with the protein component of your meals?Yes to veg, but to reduce carbs, it is the potatoes, rice, bread, bananas that all carry a lot of carbs..

Just on the topic of chocolate.. The oaty bread I eat a little of, is 20g of carbohydrate per slice.. The 85% chocolate I buy is 22g of carbohydrate per 100g bar.

The bread has the further downside, from my small inner purist, is that it contains some seed oil, however, I do like a daily slice of buttered toast.

My feeling is that the chocolate has a lot of calories, but some healthy aspects.. healthy fats, likely some healthy flavanols etc.

Drink in moderation is the plan.. as my health declined in the 6+ months prior to treatment, my kidneys were affected, so I was not tempted to drink any alcohol.

[Fergusaims in reply to Shedman]

I have increased my levels of fruit, such as cherries and blueberries, eating more avocado for the healthy fats & decreased bananas, while switching to wholemeal bread, pasta and rice & increasing beans and pulses.

You obviously like your chocolate & a little bit of what you fancy does you good. My drinking had got out of hand, mainly due to work stress, but am now not using alcohol as a crutch & planning what I drink. I do drink plenty of water. Feel an awful lot better for it. Just need to get rid of CLL now. Thanks for your detailed replies and I wish you all the best with coping with this pain of a disease.