This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma. I have also attached it to the top tool bar of the blog so you are able to access it at any given time. I hope this helps.
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I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?
It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community. The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.
Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant. Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse. Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.
Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity. In turn, they may or may not be aware of various options for their patient. When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides. Therefore, your next steps are critical to receive the best treatment for your specific disease.
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
Steps to take if you are refractory and or you have relapsed after Transplant:
Be aware that you have many options. And options give us hope for the future. These next steps are difficult, but trust me, they are doable. There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.
Review where you are located, who is treating you, and ask yourself these questions
- Am I being treated by a lymphoma specialist?
- Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
- Am I being treated at a major cancer facility?
- Can my oncologist offer me other options besides an allo-transplant?
- Have you sent you files elsewhere and received a second opinion?
Go see the top specialists for Refractory HL in the country. This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan. Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease. Be your own advocate, your cancer is serious but with tailored treatment you can be okay. This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor. When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.
Memorial Sloan Kettering Cancer Center
New York, NY
New Patients Phone#: 646-497-9137
General Phone#: 212-639-7715
Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment. There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment. Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.
*Click Here to view a current list of open Refractory HL clinical trials. For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research).
- EBV+ Clinical Trial: Ask your oncologist to test your tumor block for EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block). You can do this by calling pathology yourself and requesting the test. If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first. Read more on that trial here oh and here.
- Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients
- SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)
It is a very personal decision, and only you know what will be best for you. Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive. Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with.
- I encourage you to read some of the following on this topic.
- Written by Alison, mother of Adrienne: Cure vs. Management
- Research clinical trials around the country/world for Refractory HL at: clinical trials.
- Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum.
- If thinking about an allo-transplant research articles such as this one, oh and this one.
Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial. Remember to ask your specialist the following:
- For those facing an allo:
- How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
- How many of those patients have achieved a remission? A five year remission?
- Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD?
- What is the percentage or mortality or survival rate of those treated with allo-transplant?
- How many patients have reached a remission and have low to little GvHD that you have treated?
- Discuss side effects, ALL of them. Even those that are 'rare.'
- Will this prevent/exclude me from receiving other treatments?
- When faced with a clinical trial:
- What phase trial is this? (one through four, four being the safest).
- How many relapsed refractory HLers have enrolled in this trial?
- How many of those HLers responded? Partial Remission? Complete Remission?
- What are the side effects? How will we manage these side effects?
- What is the mortality or survival rate?
- Will this prevent/exclude me from receiving other treatments?
- Visit Corporate Angels, they will fly you for free.
- Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
- Reach out to your Leukemia and Lymphoma Chapter for financial support.
Above all, remember that with options there is hope, and there are many, many options for all of us.
Sending love and tons of light to you,
B.
2 comments:
Thank you for this. I was refractory after ABVD but have been in remission since auto transplant 4 years ago (uh, not including the melanoma I had removed two years later). I am doing great, but still live with alot of fear of relapse. I can't tell you how helpful it is to see you as a living example of the life and choices one has after relapse. It makes me feel a little more prepared and less fearful. You enrich this Hodge community.
Having had ABVD chemo, then DHAP chemo/BEAM chemo/Auto-SCT/Radiotherapy, and then IVE chemo/SGN-35 heading towards Allo-SCT (if SGN-35 is shown to be working by an FDG PET-CT a couple of days ago), your post was both interesting and well-timed! Or, in short, thanks! :)
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