Just a quick note, after I ranted, I decided to make some calls to NYU and describe the pain I'm going through (as I've been telling them this for the last month). They, and I both feel that it is time to move on to the drug called Bendumstine. It's the first real chemotherapy (besides the short run on Doxil), I've had since transplant about two years ago.
All I am hoping for at this point is for my fevers and pain to subside...
since they have kept getting worse with each cycle.
The 'B' drug is once every three weeks, for now. The only difference is -- it is a two day infusion. So, one infusion on Wednesday's and one on Thursday's.
I'll be starting next week.
Let's hope this one doesn't tear me down too badly with side effects, as I still feel as though I have little reserves to fight anything back.
If you have been on this drug before, I would LOVE to hear more about it, the change is pretty sudden and I haven't done too much research on it. So, if you have any advice or experience you could share it would be wonderful (post a comment or email me: RebekahFurey@mac.com)
Hope you're all surviving in this heat.
Sending you Love,
Bekah
13 comments:
Bekah - I've got Bendamustine in my list of possible future treatments for my NHL (MCL) if needed. I have heard lots of good things about it, and that it doesn't affect people too much at all. It's been used for years in Europe I think ...
Hope it works for you!
:)
Bekah, I saw your blog for the first time today. My sister as peripheral t-cell lymphoma. She was on SGN-35 w/little side effects, but one day it stopped working. She is now on Belinostat and it seems to be helping - her cancer is stable and getting better and she was in a very bad way going into this. I wasn't sure if you had that option for your treatment, but wanted to pass that along. I can only imagine what you are going through (from my sister's experience) and the love and compassion I feel for her. I wanted to send some of that your way and will say a prayer for you tonight. Anne B.
Hi Bekah,
I haven't commented on your posts on the forum or here but wanted to let you know I was thinking about you. I'm sorry the SGN-35 was so hard on you and hope the bendamustine will kick the HL and help you feel better. You deserve a fun-filled, pain-free summer (and fall, and winter, and spring, too)!!! Hugs to you, Janet (Quetzal)
Hoping my pants off.
Love,
Jessieo
Hey Bekah - Zach did 2 rounds of Bendamustine. I can connect you directly with him if you want to talk. I'm sure he wouldn't mind. From an "outsiders" perspective, Bendamustine was pretty tough on him but NOT near as tough as some treatments (ABVD, ESHAP, etc). He had nausea and "chemo head" and fatigue. It seemed to start 2 days after the 2-day infusion and last about 5 days before he felt normal again. It was nice that the treatments were 3 weeks apart. He only did 2 treatments because Stella was born soon after and he just moved onto something else...
We've been thinking of you. Thank you for keeping us all updated!
So glad you are blogging. Such wise, beautiful words for all of us.
love love love
julia mcmillan
Glad you are making the switch and I hope that Bendamustine gives you some much needed relief.
keepin my pants on ;)
but you know my hopes for ya girlie...
love you sista
j
Hope this one treats you well my dearest....
I am glad to read you are making the switch - was getting more and more concerned.
Be well and say hi to your Moms!
Love ya,
K
Bekah, sorry about SGN. I had pretty bad pain too, so I had to drop out. And I progressed too, but not too much. Benamustine is not horrible, no pain, just nausea. No hair loss. I had 2 cycles, but it was not strong enough for me, didn't do me any good. But my lung tumor was way too big.
Some people responded well, especially if the disease burden was not too great. You have a good chance of a remission, especially given your long break from cytotoxics.
I am looking for other trials for us all. Love and big hugs,
Marsha
Also, I'd like to remind you about the trial in Italy. They are getting good results so far - I personally know about 2 people in remission, and there are more.
I'll give you the contacts if you'd like.
Marsha
Hey Beautiful B......sorry, I've slipped on my blog-stalking lately, but that doesn't mean that I don't think of you so very often...<3
Sorry you've been having such a hard time but it does sound as if SGN was sapping your quality of life which is so important.....glad there's an alternative out there and will be hoping and waiting that this one gives you back some pain-free, energy-full days........Diane posted 'so far so good' on her FB page so I'm hoping that's in relation to your treatment as you should have had #1 by now......hugs, love and a few more hugs for good measure.......<3
Still thinking of you Bekah and hoping that the new treatment brings you a better quality of life. Take care, my friend.
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