Post treatment weight gain

Hi Fliss1208 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have HL but was diagnosed in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

I lost 27kgs during my treatments (But I was over weight for my height and build) so once I finished my second Stem Cell Transplant I was having eating problems so I was put under the care of a Dietitian who put me on a High Protein Diet…… but I was never told to come off it so after a year I put most of the weight back on. A few years later after a regular ‘Late Effects’ clinic I was told that I was pre-diabetic so cut our most protein, sugars, red meats, pasta, rice….. and upped my fruit and vegetable in take, we did start eating venison rather than other red meats and increased our fish to 2-3 times a week. We also aimed to do 10000 steps a day every day and after a year I had lost 17kgs

Hi Fliss,

Congratulations on getting through your HL treatment. Just wanted to share my husband's experience. He was diagnosed with stage 2b HL in Feb 2020, finished ABVD treatment in July 2020 in remission. He put on a lot of weight during the following year- I think over 1.5 stone. I read that this is very common in patients post- ABVD treatment (there are some scientific papers available detailing this, can't find them now but will post a link if I do). I seem to recall that there was an average of 1.5 stone weight gain in the 18 months following completion of chemotherapy. Sounds like you're doing all the right things. My husband's weight has stabilised with eating whole foods, portion control etc but he has found it very hard.  I would say that you finished treatment very recently so please try not to worry too much- your body has been through a lot and perhaps it needs a little more time for things to return to 'normal' in terms of metabolism etc. 

Thanks for your input guys, I guess I'm just finding it all very frustrating. I have been referred to a dietician to see if there's any changes to my diet which will help. Fingers crossed there's something they can point me towards which will help my metabolism sort itself out. On the bright side, I feel super healthy and im very fit....just don't look it 

Hi Fliss, I hope you see this. Wondering what happened - did the weight gain stop and reverse for you? I am 5 weeks post-chemo. I had the same as you - 4 treatments of ABVD, then 8 AVD. I had stage 2B and I am now in remission. I lost a lot of weight when we didn't know what was going on. I went from about 190 to about 160 and looked great, despite the fact that I had cancer (whoops). I started gaining during treatment, which I was happy about because I felt it meant treatment was working (and it was). But I have piled it on like no one's business. I gained 6 pounds in the last 1.5 WEEKS. I am now up over 210! I feel fat and huge and I really really don't like it.

I've gained 20 kg since finishing chemo in 2020 and I didn't lose any weight during treatment.  I'm aware that some of the gain is "covid weight" as we were under extreme lockdown rules here until the end of 2021, but that only explains about half the gain.

Hey MenagereMM,

Congratulations on finishing your chemo!

Unfortunately I never got back to my pre cancer size. I kept about 12kg ontop of my pre chemo weigh. I'm now 2 years in remission and still not shifting the lbs despite visiting the gym for tough workouts at least 4 times a week.

I've tried fasting, cutting out certain types of food, weight management programmes like weight watchers and slimming world, nothing seems to work for me. I've resigned myself to the fact I'm bigger now. I focus on the fact I'm very fit, cancer free and living my life every day. 

Try not look past your weight, take it steady on your body. You've been through alot so be kind to yourself. Enjoy the battle  you've won, you've earned it

It’s so interesting and indeed frustrating at times how different everyone’s journey with their weight can be. I lost 27Kg during my main chemo and both Allo SCTs….. was not eating after my second SCT so was put in a high protein diet but forgot to come off it. My yearly bloods were done just before covid kicked off and I got a call from my GP to say I was pre-diabetic and had to get some of the kg’s I had put back on off again…….. made some changes to our diet but the main thing I did was 15000 steps every day and it worked for me.

15000 steps a day huh? That's a LOT but it's really good to know. Thank you!

Thank you so much Fliss1208. This is really helpful to me. I'm going to chill out and give myself a break. Your words are so helpful.

Funny enough, when we knew it was cancer but hadn't done biopsies yet, and I was depressed AF, I thought to myself, "I don't care if I have to be fat for the rest of my life, as long as I get to live." And maybe that's a bargain that is panning out right about now, LOL. Maybe not, because I am JUST out of treatment, but time will tell.

Yes, I'm going to enjoy the fact that I can now worry about decorating my house and what time I'm going to get up tomorrow morning instead of dealing with another chemo this week. Perspective.

Appreciate you.

Hi everyone

I've just noticed this thread today and I've realised I am also gaining weight post AVBD. I assumed it was because I had my appetite back, but I'm not eating more than what I ate pre-chemo, so I did think it was strange.

It's reassuring to know this is something treatment related, but it is interesting that the weight doesn't seem to shift despite diet and exercise. 

I might pay more attention to what/how much I eat /how much I gain but I will keep in mind that it's more important that I am alive thankfully.

Best wishes