Dramatic weight loss, will I gain it back on O&V?

[ChuckyB]

Hi everyone

I wonder if you could give me some advice please?

I started treatment of O&V 3 weeks ago and Wednesday will be my 4th infusion of Obinutuzumab. I am worried though because I thought my weight would start to stabilise, but I just seem to be losing even more.

Before treatment I had lost just over a stone in 4 weeks, my spleen was 21cm large which is why after 6 years of w&w I required treatment.

Since being on Obinutuzumab I have lost another 7lbs in 3 weeks. My appitite is fine and I'm not feeling particularly full after meals so I don't understand how I continue to lose weight.

Is this normal with Cll patients or should I bring it up with my specialist??

Thanks in advance

Chucky B. 🙏

[lankisterguy Volunteer]

Hi ChuckyB,

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You may want to discuss this topic with your CLL expert doctor, and while I have no medical training, I would guess that you will hear that the contents being expelled from your spleen and nodes may weigh several kg, so until all of that bulk is gone from your body and your bone marrow begins to recover, things will be in constant flux.

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For some patients the start of Venetoclax also results in significant changes, some loose weight and others (like me) gained weight.

You can read the experiences of other members by looking for the box on this page labeled: Related Posts

*Dramatic weight loss on imbruvica healthunlocked.com/cllsuppo...

*Weight loss in the first two weeks of \"O\"? healthunlocked.com/cllsuppo...

And on that page I found more useful links in the Related Post box

*At a loss with weight Loss healthunlocked.com/cllsuppo...

*Weight loss and treatment healthunlocked.com/cllsuppo...

*Weight loss - CLL or Ibrutinib? healthunlocked.com/cllsuppo...

*Unexplained Weight Loss healthunlocked.com/cllsuppo...

*Weight loss with Venclexta healthunlocked.com/cllsuppo...

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Please let us know how this changes for you over the next weeks and months. I suggest you add replies to this posting so we can see the full thread (or copy the link /html address) to this page in any posting update.

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We hope you feel better soon.

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Len

[ChuckyB in reply to lankisterguy]

Thank you so much for your reply len.

I will take a look at all the previous posts you've kindly given me this evening, and will definitely keep in touch with updates.

Thanks again.

C

[Bilia]

Hello Chucky B.,

You are exactly one day behind my husband with your treatment.

He had a big weight loss the first two weeks of treatment with O as well.

He has been on additional venetoclax (20mg) since last Tuesday. Since then his weight is stabilizing. He tolerates the venclyxto better when he has something in his stomach, that's why he eats more often during the day.

Cheer up, the weight is coming back, the blood values are improving under this highly effective medication.

Feel hugs. If you want to share, feel free to write me.

Translated with DeepL.com/Translator (free version)

[ChuckyB in reply to Bilia]

Thanks for getting back to me Bilia.

I do feel a little more re assured now with your husband going through the same thing at pretty much the same time, glad to hear his weight is coming back.

I hope your husband continues his great recovery and thank you for the hugs.

Take care

C

[Bilia]

Hello ChuckyB.,

How are you doing now?

Were you able to gain a little weight again?

Is your treatment going as planned?

I wish you a peaceful Advent season.

Kind regards

Bilia

[ChuckyB in reply to Bilia]

Hi Bilia.

I am doing well thank you very much for asking..

I start my second cycle tomorrow so it will be the first time I have both the infusion and the first increase of tablets at the same time..

My WBC has gone from over 100 to 5.6 and my lymph Abs has gone from over 100 to 2.91 so my specialist is extremely happy.

I hope your husband is still doing well?

Take care and best wishes for Christmas and the new year.

C.

[Bilia]

Hi ChuckyB.,

I'm glad to read that the treatment is working so well for you too.

My husband took the 200mg dose of venetoclax for the first time today. He has no side effects except that he feels like he has to eat all the time.

Blood values are in the normal range and his doctor is also very happy about it and beams every time he sees my husband.

We would not have thought that he would be so much better so quickly than before the treatment.

How is your weight? Has it stabilised again?

I wish you all the best and a reflective and peaceful Christmas time.

Take care of yourself!

Bilia

[ChuckyB in reply to Bilia]

Bilia,

I do apologise, I forgot to answer your original question about my weight loss.

Thankfully I'm not losing any more weight, that said, I'm not really putting any on its kind of just stabilised at the moment.

I have been reassured that it will come back so I'm not worrying to much about it it now.

Take care Bilia.

C