Yesterday was the first snow in Boston. It was light. But, still, the first snow seems the sweetest here. So innocent, perfect, signals the holidays are coming. Finals are here for the Boston area. Change for the new year. Anyway, it was sweet. Ask me again in another month, I'll probably have different thoughts... but for now, I enjoyed it.
As for me, I'm back. I've dusted myself off, and have bounced back. It's a new week. And I feel great, physically. Since I've been in a 'drug holding pattern' for six days. It's amazing how fast my body feels, once I'm off the drug for a few days. And that usually translates into feeling amazing, emotionally. When my counts are low, I am low. When my counts are great, I feel great. It's a shame most of the drugs I will be receiving in the next few years will most likely drop my blood levels. But, no complaining at the moment - they're keeping me alive.
This week, today actually, I will go in and receive my blood tests. And begin my 15mgs of LBH. This will continue for two more weeks, until I get tested again. Here is to hoping, that my platelets will NOT drop so low. If they balance out, on 15 (which is highly unlikely, says most of the doctors). we could possibly continue this trial for another month.
But, we will take it a day at a time.
My CT from last week revealed some good news; however, even though the preliminary report showed 'stable' disease. It appears, since my tumors are so tiny (imagine m&m size tumors), that they did shrink. There was reduction, in what is left in my body. So, we are very happy with that news. There are about 3-4, tiny, tiny nodes. That we're hoping will continue to decrease in size with this last dose of 15 mgs. The next plan of attack if my blood levels take a nose dive at the end of December, is to begin a drug called Doxil.
The LBH and Doxil, appear to have a synergestic effect. This means that because of what the LBH does to the cancer (destroy the enzymes that allow the cancer to multiply), the Doxil then works in combination with the lasting effects of the LBH. The Doxil is NOT a clinicial trial, it is a normal FDA approved drug that is suppose to have little to no side effects (ha. yeah right, which drug, have I received with no side effects!).
But for those that worry ;) This drug is not life threatening. It is given once, every three weeks. And it has been previously used with other drug agents for Breast Cancer, Ovarian Cancer, and relapsed Hodgkin's Lymphoma (usually it is in combination in the GND cocktail). But, with just the Doxil, with one agent, it is not suppose to be that toxic. And I can be treated with it from 6-10 months, depending on if my cancer is progressing or if there is reduction.
But, I hesitate to even post this next plan of attack. I just wanted to give you all a heads up of what my doctors, family, and I are thinking will take part in the next few weeks. For now, we will continue the LBH until they formally kick me off.
On the cancer front: if you have the time. Please visit my favorite warriors, as they are in the trenches of their own cancer battles.
Adrienne and Alison, have been an incredible support to me throughout the last two years. And, after losing one of their puppies last week to a virus, a scan revealed that Adrienne has progression of her disease. To say the least, it's been a rough few weeks for them. They will be visiting the lovely Doctor O'conner, in the next week, in which we all hope he has answers, for them to control this progression.
Also, fellow fighter, Eric, is going through his second allo-transplant. Kathy (his mother) has also been an amazing support to me in the last year. And they are both fighting with all their might for Eric to be cured.
And lastly, a new-hodge face, is Hillary, who also received LBH at Dana Farber. And is recovering from her allo-transplant.
If you have time, leave some love for these individuals.
Also wanted to thank you all, for your kind thoughts last week, emails and phone calls. You will never know how much all of your support, carries me through my hard days...
Hoping you all, take hold of your good days.
Drink lots of fluids, and enjoy your time with family and friends as we approach the new year.
Sending Love,
B
8 comments:
Thats good news :)
x
Hey Bouncer......glad you're back on the up.......remember we'll always be around to catch you should you fall <3
Great to share your good news and even more glad to read you have a plan in place should your blood continue to play games......Vx
Bekah,
Nice to "meet" you. Just got your blog from my friend Linda Davidson whose daughter is Darcy. You have been in my thoughts these past few months. I begand wearing a bracelet that says, "Never Surrender". I started wearing it for Darcy. Linda asked me to wear it for you as well and I have been. Know that there is another person out here in Portland Oregon pulling for you. Here's a virtual hug. Paul Spindel
Hugs all around for the fact you're feeling better. I'm starting that upward trend now. I wish I could give you some of my platelets to make you feel better, but Michelle won't let me :(
Keep giving us good news, keep winning the fight.
- B
Hi B, I'm so glad to see you back. I know how hard it is to lose people you love. It's unfortunate that cancer brings us together, but we get to know people we wouldn't otherwise have met. I like to think about how they enriched our lives and hopefully we enrich theirs. Here's to quieter days ahead. Love, Alison and Adrienne
Bakah,
I'm so glad to read that you are feeling better, both physically and emotionally. And that tumors are tiny - that is great! They'll continue to shrink, and that's what we want! Also, thanks for the info on the drugs. I might be doing the LBH589 at some point here at Georgetown university (they just opened a trial), and all the information I can get is important to me.
Hugs and kisses,
Marsha
Hey Bekah, glad you're feeling better, hope it lasts! By the way, watch out for that sneaky devil Doxil... Make sure and keep up with your mouth care as I had a nice little battle with mucositis when I was on GND. Can't wait to hear about the great results on your next PET!
Thinking of you and sending good vibes, Chris-
Hi Bekah - you continue to inspire with happy posts and sad. Your openness and honesty about what you are going through and the fact that you care so deeply for others makes me cry and smile at the same time. I'm sure you do a lot of both yourself, and it beautifully transfers through your writing.
Keep up the good work, fighting cancer that is. M&Ms don't seem so scary, now do they?
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