Hi everyone, hope you’re all doing well. I suppose I’m just looking for anyone who might have knowledge or experience with what my family and I are dealing with if that’s ok.
My sister is 28 years old and was diagnosed with stage 2 Hodgkin’s lymphoma in February and began treatment in April. Since then she has received ABVD and GDP chemo but unfortunately isn’t responding as well as we are all hoping for. During the cycles of chemo, she responds well and pet scans come back positive, however the cancer grows back once there is a break from the chemo. She is now about to start a new regime of chemo (I forget the name) which apparently is more targeted towards lymphoma cells. If she responds well to this new regime then she will undergo high dose chemo and stem cell transplant.
Does anyone have any experience with this sort of chopping and changing of chemotherapy? Also, does anyone have any knowledge or experience of this high dose chemo / stem cell transplant?
Thanks for taking the time to read and I would really appreciate any insight at all that anyone can offer x
It really comes over from your post what a wonderful, caring sister you are @karinamw
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses and I hope someone on here will be able to share their experiences for you too
Perhaps I would say it is really important that you look after yourself as well as you do your sister.
The Blood Cancer UK support line is there for you too if you would like to talk to someone on 0808 2080 888
Please do keep posting
Thank you so much @Erica that’s really kind. Trying to look after myself and just take each day as it comes. And thanks for tagging the nurses that is really helpful. Take care 
Hi @karinamw. I can see @Erica has copied on the blood cancer nurses who I’m sure will be able to answer your question.
It must be a lot for you all at the moment and I to would have lots of questions. How are you doing?
Hi @karinamw,
I hope you are doing okay? I’m sorry to hear what your sister is going through right now. We understand how worrying this all must be for you & your family & I hope you are all coping okay?
I’m sure you will receive some shared experiences & great support from others within the forum but i also wanted to highlight our helpline details should you prefer to talk things through at any point- 0808 2080 888.
As our webpage touches on, we know that ‘in a small number of people, Hodgkin lymphoma doesn’t respond to the first treatment (refractory disease), or comes back although it responded well at first (relapse). If this is the case for you, it’s important to remember that there’s still a good chance of a successful outcome.’
We understand that there are a number of different regimes of more intensive chemo/ targeted therapies that your sister might be offered. Therefore I wondered if you have any contact with your sisters treatment team at all to be able to ask for some more information about this? They should be able to provide some printed out information about the proposed new treatment regime and answer any questions you have about this.
In addition to our information I also wondered if some of the pages from Lymphoma Action | Hodgkin lymphoma (lymphoma-action.org.uk) might also be useful for you as they include some of the drugs used in refractory HL.
Best Wishes, Lauran