Hi there, i'm just looking for somewhere to chat with someone who might understand how i'm feeling at the moment. I was diagnosed in Feb with stage 3b hodgkins. Initially i was going to have 6 cycles of abvd, scan at 4 months showed it hadnt shrunk as much as they would have hoped so it was decided i would have 8 cycles, scan at the end of 6 months showed there had been no change since the scan at 4 months so i was sent for a pet scan to see if it was scar tissue or still active cells. I went back to work in September because i felt so well and was just going to have time off for the last few treatments. Anyway results back from pet scan on tuesday have shown there are still active cells. My consultant said this was worrying as he would have expected it all to be gone, given the amount of chemo i have had :( his plan is for me to now have some more aggressive chemo as an inpatient and then possibly a bone marrow transplant.

Has anyone been in this situation before? I just feel so low at the moment, when i was 1st diagnosed the consultant was really positive and said "if your going to get a cancer this is the one to get, it responds really well to treatment" then at 4 month scan when i was upset he said no this is good news, it has shrunk, just not completely. And now he is saying this is worrying, has me really frightened.

Hi, and so sorry this is where you're at right now. If I were you, I'd be asking now for a second opinion, it is your right, and I'd try to get to Manchester's Christie Hospital to see Professor Radford, or if you are in the south, then UCLH in London to see Professor Linch. Both are top experts in this field. You might have to ask your GP to arrange it, but do discuss it with your present consultant anyway, hard I know, but they will understand your concern.  

From what I understand, a change of chemo at the 4 month stage is now frequently suggested if a PET comes back positive. 

Hi Rainbow

I think this problem is more common than we all realise. I have recently been concerned that ABVD wasn't working and felt just as you do. I haven't (yet) had a bone marrow transplant but I'm sure there are people on this site who have and have done very well.

Thinking of you and wishing you all the best. Stay strong and positive,

Gill.

It's a frightening situation to be in.   I've had a similar experience -  I was diagnosed with lymphoma August 2009, had 6 months of fortnightly ABVD treatment and got the 'all-clear' in March 2010.   Alas, I relapsed within a month when I found an enlarged lymph node on my neck - there were no other symptoms (fatigue, night-sweats, the intolerable itching) but within a few weeks it was confirmed that the lymphoma was back or, more likely, hadn't entirely been eliminated by the ABVD.   The good news is, it was caught very early.

I had 2 months of high dose chemo in June/July which wiped out the cancer but, as a relapse, needed a stem-cell transplant.  I'm glad I've had it done as I'm told that, in my personal case, this was the best treatment option available to me.

I'm currently on cycle 4 of 6 ABVD and remember my consultant telling me that even if the first round didn't work, Hodgkins is one of the few cancers where you get a decent 2nd chance at fighting it.

Best of luck, Hayley x

Hi

For what its worth, in my case (Stage 4-B), the disease still exists after 12 doses (6 cycles) of ABVD, and I have just finished 3 cycles of MINE salvage chemotherapy. A PET-CT scan scheduled for end Nov should hopefully give me an all-clear. Still, doctors are strongly recommending that I follow up with high dose chemotherapy and autologous blood stem cell transplant, but considering my age (Male 56 yrs) and the associated risks, I may decide to call a stop now and take up naturopathy or other alternatives. Yes, even though they say HL is among the most curable, it seems to be outsmarting the white coats with disturbing frequency. 

Anyway, don't lose hope, and fight with all your might and will power.

Best of luck

Tinnedfruit

ABVD did give me the usual ill-effects (weakness, fatigue, loss of taste / appetite, sore mouth, hair loss, wrinkling and darkening of skin and nails etc) but the 'B' (Bleomycin) so badly scarred my lungs after the 4th dose that breathing became painful and laboured even after a short walk. My advice is, warn your oncologist at the first sign of breathlessness / pain in the lungs and discontinue Bleomycin in this case. 

I was in remission for 14 months after stem cell rescue in Mar 2011, but have suffered two relapses - Apr 12 and Dec 12. More chemotherapy followed  (BOPP and MINE) and I have decided to switch to nature cure in the future. 

As in all illnesses, the younger you are, the better your chances to win. Keep positive and well.

Tinnedfruit