Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Auto stem cell not working after 100 day pet scan

beatsull
Posted by

Hi, I was diagnosed with Hodgkin lymphoma in February 2017, stage 4. I went through 6 rounds of ABVD but the results weren't what we wanted so I started on ICE treatment and underwent a auto stem cell transplant in March this year. I am waiting on my PET scan to determine results but the past 4 days I have temperatures, chills and body aches. I have been to the hospital yesterday and they said it may be a viral infection. Last night I had a night sweat. (This being a big indicator when first diagnosed) . I suppose I am just wondering does anyone know what happens if the transplant has failed? What are the treatment options? I can't find much online and I won't be getting my results or meeting my oncologist for a few weeks and I'd like to have an idea of what we will be facing into. Thank you.

Thehighlander
Posted by

Hi , just dropping in past from the dedicated SCT Forum just to say if you have had a viral infection then these side effects are normal and for me I ended up in hospital on 3 different occasions during my first 100 days post Allo with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis.......

At this point in time don't start looking for other options as you have no idea that this will be the case.... but call your SCT Contact Nurse and talk this through but be assured there are lots of tools in the box that can be used.

Highlander ((hugs))

beatsull
Posted by

Thanks Mike,my name is Michael too! I know I shouldn worry but got my second night sweat in a row last night and ever 6 hours my temp does up if I dont take parcemol. Im worried that the cancer is back and getting worse im not sure what to do. Doctor s are waiting till the pet scan at the end of the month cause that would be the 100 day marker. I guess in just scared its been a long 2 years and it doesnt seem to be ending! Anyways thanks mike 


Thehighlander
Posted by

Good morning Michael, I am over 30 months post my second Allo SCT and the post SCT life is a funny old world we live in as our bodies are going through major changes. If your temp is up I would get checked out as there are a lot of infections going about atm, a lot are viral so not much you can do about them but a second opinion from your GP always turns the 'what if?' button down. 

Mark86
Posted by

Hi Beatscull,

I'm sorry it's been such a long and unpleasant time for you.  I have recently completed 6 months of ABVD and have been in remission for a few months so I've not had to go down your road as yet.  However I researched all the possibilities and available treatments.  There is a new immunotherapy drug to treat Hodgkin's called nivolumab which was only approved by the NHS late last year I believe.  My understanding is that at present it's only available to patients who have had Hodgkin's resistant to 1st and 2nd line treatment or who have relapsed after 2nd line treatment.  So if the SCT isn't working then it might be an option for you.  The drug has only been trialed for a short period but the results have been very encouraging. You should read up on it and ask your doctor about it.  I hope the PET results are the best possible result for you but even if it's not there are still options so don't give up hope.  I wish you all the best for it!

Mark

beatsull
Posted by

Thanks Mark and Mike. Went to hospital today and ct scan shows raised nodes in my chest im waiting for pet scan on monday to determine if its lymphoma all though the doc thinks it is. Im really worried now as the cancer is back so fast since my auto stem cell I just hope they can do something else. Start that drug you were on about Mark. Has anyone had this kind of outcome before there is also talks of a possible allo transplant. Im now fearing the worst possible outcome from the pet and I know I shouln but its hard not ta.

Thehighlander
Posted by

Hi  I am just in the door and seen your post. There are a number who have had an Auto then Allo and are doing good and I am sure that  will pick up on your questions as her lass had to do this and is doing good :)

moomy
Posted by

Hi Michael, 

Yes, daughter did go through an auto followed quite a bit later by an allo, she had a few years between, in fact as her team were trying a few novel ways to get her into remission (things have moved on quite a bit even in the last few years) which eventually worked, and trying too, to give her time to build on stamina (she's very slender!) to get her through. 

Yes, she is through and building her career again. So there is hope! 

Do think about joining the group 'stem cell transplants for blood cancer' as there we tend to discuss these treatments in greater detail. 

Hugs xxx