Appetite

FormerMember
FormerMember
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Hi all!

Hope everyone is doing ok.

I haven't posted in a while, but keep reading the forum - it really does help.

I just had a question with regards to appetite following auto stem cell transplant.

So just a bit of background. In late 2018 I relapsed with stage IV Hodgkins Lymphoma and underwent the DHAP regimen. There were no major complications and was given a clear interim scan. This set me up for a successful harvest and ASCT in february 2019.

Thankfully, I was put back into remission and discharged in march 2019. 

It's now coming up to a year since I finished my treatment and I still haven't regained my appetite. I could go without food all day and not get hungry. My doctors at st james in Leeds arent concerned and have advised me that I just need to keep an eye out for other symptoms such as weight loss, night sweats etc.

Im just wondering if this is something anyone else has gone through or heard of. 

Thanks for any responses, it's really appreciated.

Calvin

  • Hi Calvin,

    that sounds rough (I’m a real food lover!) just a thought; is your sense of smell ok? As that has a huge amount to do with hunger and enjoyment of food, plus it affects taste too.

    Chemo for an auto does damage all the hairs in your nasal tract as well as the ‘hairs’ in the rest of the respiratory tract; just wondered if this has all fully recovered. But as you say your team at ‘Jimmy’s’ aren’t concerned, I would guess (and hope) things should improve at some stage. 

    Hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Hi!

    Thanks for responding so quick.

    My sense of smell has been fine after treatment to be honest, it's really just been my appetite. I'm a massive foody so it is a bit frustrating.

    I've only managed to find a few examples of people from other forums where this has been an issue in the long term. Non of the literature I can find really talks about it.

    I guess this could just be my new normal....

    As long as my doctors arent concerned I'll try not to worry. And as I say, I haven't had any other symptoms.

    Calvin

  • Hi Calvin , I was told that my stomach had basically shrunk during all the treatments and it may or may not recover.

    My appetite following my second Allo SCT was very very bad. being badly sick so off the thought of food........ it took a good 4 months to get off the little and often 'slop' food.... mash and cheese, liquidised soups.

    But even now 4+ years post Allo SCT my appetite is small so no way can I look at large plates of food and defiantly not more than one course.

    We are more careful as to what we eat to allow my digestive system to deal with it.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Hi Mike,

    Thanks for responding.

    It is really reassuring to know I'm not the only one.

    I think my problem is that I always thought I could get back to how I was before treatment, physically atleast. But I'm not sure thats necessarily going to happen. And being a massive food lover it is a bit frustrating haha.

    Calvin

  • Totally understand this Calvin.

    My great SCT Specialist Nurse Consultant told us the very first day we meet her that we need to look for the greater good in all this and for me it was basically life or death.

    She also told us to expect life as we know it to change and nothing was off the table as SCT can touch every power of life.

    I am now over 4 years on and on the whole life is good, no very good. Yes some changes had to be made to accommodate some of the long lasting u wanted gusts that SCT can give.

    I now eat well but not as much as I once did.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Calvin,I have the same problem.I was struggling to eat before being diagnosed with bladder cancer.Since surgery 4 months ago I hardly ever feel hungry.I’m not a foodie so it must be much worse for you to have no appetite.I’m hoping that my appetite will return with time but as I’ve been like this for almost a year it might be my new normal too.Best wishes Jane