Hi 

Your story is quite similar to mine. Diagnosed in Jan. Interim PET-CT scan in Apr after 6 doses of ABVD showed near complete response. Sometime after the 7th dose, Bleomycin-induced lung damage was detected and this drug was omitted for the final 5 sessions. Final PET-CT scan after 12 doses showed 3 new cancerous lymph nodes on the trachea. The largest of these was excised after a painful thoracoscopy (I have a 12" long scar on the right chest wall) and biopsy confirmed it to be HL. I will soon be finishing the 3 cycles of salvage MINE chemotherapy, and regardless of the result, doctors are strongly advising me to go for autologous blood stem cell transplant, even though at my age (Male 56 yrs), the risk of failure is high. I am curious to know your age and what the side-effects of your high dose chemo and the transplant were. I am particularly concerned about the month-long quarantine and the long period it takes to recover stamina and general well-being. Presently, besides a persistent dry cough, I have no hair, taste, appetite and I suffer from breathlessness and giddiness after climbing only 10 steps. Devastating, considering I used to be very fit. Fortunately, blood, kidney and liver tests are all normal so far.

Cheers and stay well.

Tinnedfruit

Hi

Rather than wait, I would advise you to get a scan, if I am not wrong, blood tests can sometimes fail to detect a relapse. 

I was diagnosed with HL in Jan and after 12 doses of ABVD failed to clear the disease in Aug, I am now due for my 3rd and final cycle of MINE salvage regimen next week, and my doctors are strongly advising me to go for high dose chemotherapy and blood stem cell transplant. As the process is very risky at my age (Male/56yrs), costly and needs a long recovery period., I may just skip that treatment and live with the risks. 

Dont worry, just go ahead and do the right thing.

Cheers

Tinnedfruit 

Hi,

That all sounds pretty painful.  I was devastated when I got the news that I'd relapsed so soon after the 'all-clear', more so than when I got the initial diagnosis a year ago.  I'm 47, married with 2 kids & have had the unwavering support of my wife throughout.   In terms of my recent treatment, it was potentially 3 monthly cycles of GEM-P, followed by the stem-cell transplant.   I responded very well to the chemo so only ended up having 2 cycles which left me feeling quite sick at times.   Had a PET scan after which showed no active cancer cells so the next step was the stem-cell transplant.   From discussions, people have responded differently to the harvest, some finding it very difficult, I found it just about tolerable (4 hours on a machine, with potentially another 4 hours if insufficient cells obtained).    Admitted to the Marsden soon after which I was dreading - not only the treatment but being away from the family.  I was told to expect 4 weeks.   I was in a 4-bed ward with people similarly affected but I know others went straight into isolation.   High dose chemo straight away, daily for 5 days, followed by a 6th super chemo which wiped out immune sytem, bone marrow etc.   I dreaded feeling sick but they controlled that exceptionally well.   Day 7 had my bone marrow returned which was a bit of an ati-climax.   During 2nd week all my hair fell out but as I felt so fatigued spending a lot of time asleep, I didn't have time to worry about it too much.   Week 3 my white-cell count started to rise showing that my immune system & bone marrow was growing & 2-days shy of 3 weeks I was discharged.  That was a month ago, no sign of hair growing, feel very tired still but week by week that's improving, appetite now pretty good although feel slightly nauseous most days (but not all day) but have tablets to control that.   So, am I glad it's over?  Absolutely.   Was it the only course of treatment available?  I was strongly advised yes so didn't argue.  Am I in remission?   Seems so & I'll have a further PET scan in December to see how I'm doing.

Hope this helps, if only a little bit?

Regards,

Martin...................

Thanks Martin.

You seem to have cruised through it all. Congrats and stay well.

I am considering alternative therapies (like naturopathy, psychic healing etc.) rather than subject my tired body to more intense chemotherapy and stem cell transplant. I have a son + daughter in college, so I better get back to work asap, I've had no income for the past 10 months! Did you manage to stay at work throughout? I am a lecturer and my doctors advised against my entering a class full of students, so I had to quit. In any case, the belomycin induced cough and breathlessness would have forced me to give up soon enough. 

Hope to report positive results soon.

Cheers

Tinnedfruit

Emily - go back to the doctor ASAP and ask for a PET scan. Itching was my only symptom until a lump appeared in my armpit, 4 doctors told me it wasn't lymphoma until a suspicious doctor sent me for a PET scan which showed stage 3 Hodgkins. PLEASE get the itching checked out properly, it IS a symptom of lymphoma.

Let us know how you get on, Hayley x

Thanks for the kind words - I'm doing my best to stay well.   In terms of employment, I've been in the fortunate position of being able to work from home whilst I've been able - continuing to work a huge open-plan office was immediately ruled out when I got my initial diagnosis.

As far as the recent treatment, there's no question that I haven't tolerated the recent chemo as well as I did the ABDV and the overall stem-cell transplant process was not something I'd wish to go through again in a hurry.  But in my personal case, my personal circumstances, it was the best option available to me.  I didn't look into alternative therapies but if this is your preferred course of action - it's your body & your future - then I wish you every success and pray for a positive outcome.   Consider all options though.

Cheers for now!

Hi

The PET/CT scan of 23 Nov was clean and the docs have cautiously declared me to be in remission. They also bombarded me with statistical data and convinced me that the high dose chemotherapy and blood stem cell transplant is worth going for despite the risks and costs! Presently off all medication, body slowly coming back to near normal and awaiting mid-Jan start of stem cell therapy. All going well, should be home in mid-Mar. Any others willing to share advice/experience on blood cell transplant besides Marvick1?

Cheers

Tinnedfruit