She is currently at Tulane finishing up her 2nd cycle of DA-EPOCH-R. I hate to read too much into things but she has had considerable changes that make me hopeful - maybe more cautiously optimistic. Since she switched from mini-BEAM to this new regimen, the pain in her left ribs/lungs has subsided to nearly non-existant. She had some fluid build-up in her right lung after the last cycle of chemo (a few days before Labor Day) but that has gotten much better. Dr. Safah told us that there is a chance that the fluid being in her lung was due to the tumor necrosing (or dying). Man, that would be outstanding news. We are extremely hopeful that this is what is going on. Having said that - it could also be the lymphoma acting up again. We won't really know until the next scan takes place. A month ago, Elizabeth was complaining that her chest was tightening up and it felt like a belt was strapped around her chest. This isn't the case anymore. She is having no such trouble right now. Again, positive news but we have to take this with a grain of salt until we get the next scan done. There are explanations for each of these things causing less trouble than they were without the cancer shrinking or going away but we have to stay positive that this regimen is doing it's job.
I won't take too long on the details here but cycle 2 ends tomorrow. Dr. Safah wants to do her next PET/CT scan next Wednesday to assess the situation. We thought about doing it one week later but Dr. Safah wants us to have time to go to NIH in Bethesda, MD and see Drs. Wilson and Dunleavy if this scan doesn't turn out good. However, if the scan shows what we are hopeful of, then we will either continue to do the DA-EPOCH-R for another cycle or go to allogenic (donor) stem cell transplant. I think that the auto stem cell transplant is now off the table based on all the chemo that she has had so far. The odds of the auto working are significantly less then they were a few months ago. I have said from the beginning that the allo gives her the best chance at a cure but we wanted to save it in case the auto didn't work. However, we are now at a point that the allo will be our best chance to rid her of this disease. We are still very hopeful that this will all be over soon and she will be cured of this persistent, crappy disease. She is a fighter, an inspiration, a role model, a wonderful wife, mother, and best friend. She can and she WILL win this fight.
We continue to say thank you all for the thoughts and prayers. I am attaching a flyer that Liz Callegan had made for us as she organized a blood drive for Elizabeth. Please donate at one of the centers if you can. We certainly appreciate it so very much. I will be in touch about a drive here in Memphis when LifeBlood gets back in touch with us.
Love y'all and God Bless,
Scott
Thank you so much for this blog. Elizabeth is truly inspiring. Our stories are a tad similar. I too am a mother of an almost two year old and was diagnosed with Hodgkins, went through ABVD with a clean PET after 2 cycles. I finished May 23rd, and just found out that it came back (or never left), and I start ESHAP with radiation tomorrow. They didn't do radiation due to bleomycin lung toxicity concerns. However, now they feel that they can just focus radiation on the two nodes that came back without affecting the entire lung, and hopefully kill this beast once and for all. Anway, out of all the blogs I've read, hers has been the most helpful to me as I too continue this fight so that I can get back to caring for my family and fulfilling my dreams of completing my PhD. At this rate, I will be in school for 10 more years!
ReplyDeleteAnyway, send her strength, and please keep us updated on how she is doing. Best,
Angie
Angie...you are welcome. And may I add, God bless you and we will pray for your good health. ESHAP was not overly bad for Elizabeth and she made it through fairly easily. Unfortunately, ESHAP did not work very well for her and we saw much better responses from mini-BEAM and DA-EPOCH-R. It was revealed that she did have another mixed response to DA-EPOCH-R and has started SGN-35. Her tumors are highly expressive for CD30 so that gives up great hope that it will finally put her in remission again and allow her to do an allo transplant. Crazy that all we want is for her to do an extremely risky transplant - but we know that is her only shot at a cure.
ReplyDeleteI too got my PhD and know it is a long and grueling process - one that can only be extended for an insane amount of time fighting a stubborn disease. Elizabeth put up with a lot of crap from me while I got my degree but it has helped me to be a much better researcher and ask the right questions. It also causes me to go into too much scientific detail on a lot of the blog posts. Haha. But the reason that I did so was so that people like you could understand what I/we felt and what our options and treatment strategies are/were.
Good luck in your fight. You can and will win...even though it seems like the news never gets better, it will. Look for the small positive things to glean from the bad news and it keeps you focused on the main prize - your health. Please let me know if there is anything that I can help with. My email address is scott.p.noel@gmail.com.
Best,
Scott
Hello Scott,
ReplyDeleteI was just wondering how Elizabeth is doing, as you haven't blogged in awhile. Also, would it be okay if I add the link to Elizabeth's blog to mine?
Best,
Angie
Sure thing on linking the blog. If I am not mistaken, I think I saw that you have joined the lymphoma.com message boards, correct? Unfortunately, I ended up on that forum (unfortunate because Elizabeth got sick) but it is an absolutely wonderful place to share things and learn from others. Lots of great people there.
DeleteGood luck with ESHAP...hope it works wonders for you. Lots of people have done great with that regimen. I believe that MD Anderson uses ESHAP a lot for relapsed/refractory Hodgkins.
Take care,
Scott