A weighty issue saga

[Goosebumps52]

Greetings all,

Let me start by saying I have always (for the last 60 years) been conscious of my weight. Even at 72, I am still 'hard wired' into dieting. Before starting hydroxy 3.5 years ago , I was 53kg and 164cm. My ideal range pre-hydroxy was in the 55-57kg range. Today I am 60kg.

My hydroxy dose was lowered to 500mg/day as the platelets came down and apart from the permanent bloated belly, I feel quite good. However, I find it very challenging to abandon my weighty challenge.

I have thought about switching drugs, but doctors and specialists don't recommend a change to Peg interferon. I don't even know if it could help reducing my bloated belly.

In the meantime I skip from one diet (+ daily exercise) to the next, because that's all I can do at this time. Dr Dukan's plan is my next target, as I had great success with it in its heyday. That said, I tend to think that chemo drugs inhibit any intentional weight loss.

Has anyone had any success with any particular diet or success requesting a change of drugs. I probably sound a little foolish worrying about my weight at 72, but I hope I have some friends here in the same boat.

Cheers and best wishes for now....

[hunter5582]

I do not think is is foolish to worry about your weight at age 72. You have the right to set your own priorities based on what impacts your quality of life. While your weight remains in a healthy range for your age/gender/height, there is more to weight than health. Within reason, self-image matters at any age.

I do not think there would be a serious health concern at your current weight; however, bloating could indicate something more going on with your GI system. This would be a more significant concern if it causing discomfort. Are there any other GI issues manifesting?

Regarding the choice between hydroxyurea and Pegasys, this should be the patient's choice. In the absence of a medical contraindication, it is up to you to decide which is the best match for your treatment goals and risk tolerance. HU and PEG are both recognized as first-line treatment options for ET or PV. Providers should work with the patient through a process of shared decision making. There can be issues due to the fact that PEG is so much more expensive. Healthcare formularies always prefer cheaper drugs. If you wish to pursue PEG, you may need to advocate for the change.

There is no specific diet that there is any evidence to support regarding weight control while on HU. I think it is best to focus on healthy eating and exercise. In order to lose weight one must burn more calories than consumed while ensuring adequate nutritional intake. There is some evidence to support the Mediterranean Diet for people with MPNs. Getting most of your nutrition from plant-based sources and avoiding unhealthy fats can certainly help.

I am back to getting back to a better weight. I lost about 26kg, but gained 11kg back after a surgery and COVID. I am using a weight-loss app to track calories and am back at the gym exercising more regularly. Hope to lose about 2kg/month.

Wishing you all the best.

[Hatchie]

I hope you're doing well. I wanted to share my experience with weight management while on hydroxy (1000mg of hydrea) for the past two years. Despite the challenges, I've found success with intermittent fasting.I've been practicing intermittent fasting, where I eat normally on certain days and fast on others. This approach has helped me maintain my weight effectively without the need to meticulously count calories or macronutrients. It's been particularly convenient for my family's lifestyle.

[Goosebumps52 in reply to Hatchie]

Couldn't agree with you more Hatchie. I trialled this WOE recently and was pleasantly surprised. I do believe it's the easiest way to lose/maintain. It's even better if you eat the same/similar foods (with pre-planned calories) on the "down" days. I found the 500 cals on these days became easier after the first week. Thanks for the heads up!

[Winchie in reply to Hatchie]

I agree. Intermittent fasting really works.

[Loubprv Volunteer]

hi G 52

I don’t think you’re a bit silly to be concerned about your weight. We were born to be lean and not hoik around excess pounds. Friends have found the 5:2 diet very good.

If I were you I’d stick with hydroxicarbamide if it suits you. I was on 1000mgs a day for 15 years very successfully and had to change to Peginterferon a few weeks ago, due to skin issues.

All drugs have possible side effects and if you’ve found one to which your body doesn’t react negatively, and it’s working then why change? I didn’t put weight on whilst taking HU.

Louise PV aged 70 x

[LT55]

While I don't have any advice on weight loss or meds (just aspirin for me at this time), I want to add my echo of others that your concerns about weight gain are not foolish. At age 59, I have maintained my weight (+/- a couple pounds) over the last 40 years. Just thinking of having to replace my entire wardrobe if I gained weight is a overwhelming! 😜😂😍

[Winchie]

All my life I’ve had to watch what I eat so I don’t gain. I do have to cut back on my diet. I write down what I eat every day so I don’t overeat. I am 81 but I still try to stay in shape. I have three physical fitness classes a week and when I don’t go to them, I walk for about 45 minutes.

[Goosebumps52]

Thankyou all for your comments. I am feeling a lot more positive today as a result. I'm already hunting new menus for the 500 cal days. "Better the devil you know" they say....

Best wishes to you all!

[Purple478273]

I have had awesome success with tirzepetide after life long struggles! My mpn specialist said there was no concern with taking it, and in fact was thrilled with the results in my overall health. Highly recommend.