Hi! Im new!!

Hi Lainsie and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 at 43 with my rare, incurable but treatable type of skin Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

What one of the 60 types and sub-types of Lymphoma do you have?

It is a struggle when your taste goes as this often then affects your appetite...... I was like this for about 4 months following my second Allo (donour) Stem Cell Transplant. 

I lost 27kgs over my main treatments and was eventually seen by a dietitian. She basically said that for a period of time I had to look past enjoying food..... my main task was to get fuel into my body.... and that had to be high protein.

But i had been very ill during my Stem Cell Transplant and developed stomach problems due to Graft-versus-host disease (GvHD)

So for most of those 4 months I basically lived on hourly small cups of liquidised homemade soups with lashings of cream....... eventually everything clicked back in and was back on normal food.......

So from my point of view you are actually doing very well.........1 - 2 smoked sausages a day and the odd choc mousse or Tiramisu!!...... wow if only I could have managed this back 8 years ago.

Thanx Mike. Respect  to you  on your  journey.  I have  DLBCL. Growth was on back of tongue  & scans have revealed 1 lymph  node In same region so for radiotherapy  too. I can't do bland/ creamy! I've been managing beef chilli/ nachos, pasta bolognese  & sweet/sour chicken- usually  by now per cycle.  I've never eaten  normally  since  starting  chemo. Cant enjoy  anything  i would  normally  eat which is very  frustrating! Mostly things taste like wallpaper  paste! If it's not palatable I physically  can't eat it! Can't swallow  it and end up spitting  it out!! Awful I know . But that's my issue! No Dietitian  will tell  me otherwise!! Got my Hi cal drinks - appear to be at least  3 flavours so hope  I can find one of use!! 

I was violently sick just after just after I got my first set of Stem Cells.

My heart went crazy so ended up in the CCU Unit for a few days, then the same happened a few days later when I got my second set of cells…… so again into the CCU.

I was left with AFib……. and a CT showed that I had developed a massive Hiatus Hernia that had enclosed my stomach….. 8 years on its has not been touched as it’s rather dangerous to do…… but I am on meds that controls the stomach and can eat anything…….

But back then anything more than liquidised soups made me sick, protein drinks just bounced in my stomach and came back up,

I was on high dose, rather disgusting immunosuppressants….. just the small made me sick.

The thing is I was eating no problem during my main chemo and through my first SCT but it all went out the window during my second SCT…..  I hope that you find the drinks helpful.

Ugh. Sorry to hear this. By way of personal experience, I received a biological targeted therapy for 5 years - one known for "taste changes" - which manifested as revulsion of the very idea of food, even though I was absolutely hungry. This lasted for 24-48 hours after each infusion. So, I adapted to not eating anything in that time frame, consuming only necessary liquids. After that, the desire and ability to eat would gradually return.

However, the appeal of any given food was very selective and fleeting. I would scan the pantry for anything that struck me as edible until I found something, no matter the nutrition value. Canned tomatoes were an appealing thing. By themselves. The rub is that I would have to eat them then and there, as later in the day they would no longer appeal to me. 

I would imagine that you have tried going outside of your normal diet. Even so, this method will only reveal a wider variety of foods that are unappealing. But, in there somewhere will be something which you can both eat and which will stay down. As to the nutrition drinks, I would hold my breath and simply swallow it as quickly as I safely could, as even vanilla was horrible at times.

It will all pass, but one day at a time, it is do-able.

Po18guy - thank you  for taking  time to reply !! You  made me smile! As I eat my 1st smoked sausage  of the day! This  has  been  my worst  cycle having  lost  my taste  D1 and now D18 so highly disappointed!! Chemo again  this Friday.  But when  I see how much  you  guys have  gone through  I feel  ashamed  to open my mouth. Utmost  respect  to you all 

hi i am new to this site ihave stage 4 non hodgkinson i know what you say about not being able to taste anything so have lost 3 stone plus lost all my hair on first kemo feeling so low at moment waiting for more results we must all keep strong 

Hi waungoch abd a warm welcome to our little corner of the Community.

To allow you to better connect with the group activity do join the group, you can do this by by “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using).