Pet Clinical Trial - thoughts?

Dorney1 · Regular Joined: 01 Feb 2010 Posts: 15

Hey everyone,

I wanted to start a thread to gather some opinions on the clinical trial I am currently on. For those of you who don't know my situation I am stage 2a Hodgkins Lymphoma. I am currently undergoing ABVD.

The aim of the PET clinical trial is to do more frequent PET scans to ascertain if early stage Hodgkins patients beat the disease quicker and therefore expose themselves to further unrequired chemo and radiotherapy.

The structure of the trial is 3 cycles of ABVD and then a scan. If the scan shows up clear (NED) your name get's randomly assigned within two groups, A and B. Group A receive no further treatment and group B receive radiotherapy.

I joined the trial because I wanted more regular testing and follow ups but now my treatment is underway (and I understand a lot more) I am slightly concerned about how this may affect my treatment in the long run.

I am making a positive assumption here that I am NED after 3 cycles (for arguements sake). My concerns are - if I end up in group A - what if the chemo wasn't enough? Is the disease more likely to come back after only 3 cycles and no abvd? I know it gets harder to treat when it comes back and, to be honest, I would be more comfortable putting up with further chemo *Just to make sure*.

Then, if I end up in Group B - my scan has shown NED - why am I being exposed to radiation if I am cancer free? Is it worth exposing myself to radiation and future cancers if I am NED? Does anyone have any stats on radiation and chances of developing future cancers?

So - these are my concerns for each group. What does everyone think? If you could choose which group would you place yourself? Or would you place yourself in neither, withdraw from the study and just do 6-8 cycles like everyone else?

Thanks for your thoughts. Keep strong.

James

Sleeper

Hey James

Tough one for you but as you will already know this decision is one you can only make once you are comfortable with THE decision.

I am on my second lot of R-CHOP of 3-4. The same goes through my mind that I am not getting the "full" dose. I have discussed this with my Doc and he is quite happy with the regime being so short. I am then faced with 3 weeks of Radiotherapy which I am just in the middle of reading up on.

It seems to me that a lot of data regarding radiotherapy is given on old methods where higher doses were given. I am booked in at Christies to discuss radio so I hope to gather more info as I go along as my time for chemo nears it's end.

James I wish you peace in whatever you go with and whilst I can not offer a do this or do that I would offer that you listen to your medical team, read up and find as much info as you can and do not be afraid to ask questions of your med team and if that means stopping or starting something...well....as long as you make your decisions on an informed choice and that you are happy with your decision.

Wish you well and keep us informed.
I am sure Chemo man will be around to give you some sound info, links or those superb casts he finds.
_________________
Age 35 at diagnosis
Diagnosis 8th Jan 2010
Diffuse Large B Cell Lymphoma (subtype ABC)
1st Pet Scan - Negative
Stage - 1A (localised neck)
LDH - Normal
Bone Marrow Trephine - Clear
Chemo x 3-4 R-CHOP 21
Radiotherapy x 3 weeks
My Story So far http://www.wildrossendale.co.uk/non-hodgkins-lymphoma.html

ChemoMan

Hi Dorney1

This decision is yours to make alone. You need to work out the risks of secondary cancer which will arise from this protocol and factor in your age. HL always had a larger degree of secondary cancer associated with it than NHL for 2 main reasons....1 is the greater reliance on Radiotherapy and ...2 is the younger age at onset.

You can actually google the amount of rads you will get and you can probably get a feel for the risks of secondary cancer. The danger period is between 20 and 30 years out for HL and I think you can work this out from that info.

Thats about it James do the reasearch and come up with your own decision....what ever it is it will be the right one for you if you are informed....Knowledge is power Very Happy

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Dorney1 · Regular Joined: 01 Feb 2010 Posts: 15

Hey Chemoman and Sleeper - thanks for your comments so far.

I really appreciate what you are both saying and I agree that the decision is mine and mine alone. I appreciate your reluctance in guiding me either way but I guess I am just looking to understand what you would do *IF* you were in my shoes?

I know that if I was 60+ I would hit this cancer with every they have! But I am 26 and therefore concerned for the future as much as the present.

The 3rd option for me is to forget radiotherapy altogether but to come off the trial if I am clear after 3 cycles. Then I can join the 'normal' treatment program to have 3 more cycles and really make sure it's gone. I know that's a lot of extra chemo but I really think I would feel more comfortable having as much treatment as they will give me!

James

ChemoMan

Hi

If I were in your shoes I would be thinking along the same lines. The chance of secondary cancer from HL is about 10% at 20 years and blows out to 26% at 30 years out. The incidence of NHL secondary cancer is less than 10%. It is believed this is due to the greater use of radiotherapy in HL.

Below is a good article
http://cebp.aacrjournals.org/content/16/3/377.full

Good luck.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

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