Trials, Clinical Trials — and Almost Clinical Trials
May 9th, 2011
I’m sorry I haven’t posted in awhile. My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue. It’s been a bit of a dance — keep on top of life and manage to rest and exercise.
It’s a little scary to have experienced a sense of ascension from the Cancer Pit and then feel it tug me back in. Aside from my own physical symptoms, last week two online friends died. Both were parents of young children. Both were around my age. Sarah had been in remission and faced a recurrence that ultimately killed her.
This is Sarah. She made a promise to herself that she would die with her hair.
Derek wrote about going through the same treatment as an online friend on the same timeline. His friend’s treatment worked, but his did not.
These events renewed my sense of urgency about improving our understanding of cancer –– not just breast cancer, but the ovarian cancer that killed Sarah and the colorectal cancer that killed Derek.
Last week, I also participated in my first clinical trial. I had learned about it through Susan Love’s remarkable project, The Army of Women (AoW). I had a doctor’s appointment anyway. It only involved drawing a few extra tablespoons of blood and a follow-up phone call. The researcher I spoke with said that AoW has made a huge difference in their ability to recruit enough subjects for their study. Across the board, she said, the participants have been eager to help.
I had intended to do another clinical trial at the end of my treatment, but it didn’t work. For that trial, I would take Metformin to prevent a recurrence. Because my tumors were hormone-receptor negative, I am not taking anything like Tamoxifen or Armidex to prevent recurrence. My chance of recurrence is around 20-30%.
My oncologist had explained to me why they were prescribing the diabetes drug to breast cancer survivors. They had done meta-analyses of survival and recurrence rates in breast cancer survivors. Metformin seemed to significantly lower recurrence rates when they looked at populational data, controlling for other factors like weight, age, and fitness. They thing it has to do with cortisol suppression.
I ended up not being able to do the clinical trial because the Metformin shipment got held up in Canada. By the time it arrived, I was no longer qualified because of my date of diagnosis. My doctor offered to prescribe it to me for off-label use.
I hesitated. There are potential gastrointestinal side effects to Metformin. And for those of you who are new to my blog, you may not realize that I am a Side-Effect Queen. No discomfort, however small, seems to pass me by.
Then Sarah and Derek died.
That was it.
I called my doctor and decided I couldn’t bank on my fitness, youth, and good attitude to prevent a recurrence. I felt better about doing something at a molecular level that might interfere with tumor formation.
I spoke with three breast oncologists who thought the Metformin was a good idea. My blogger buddies who went to the National Breast Cancer Coalition conference and reported that the Metformin trial seemed like the most promising thing out there in preventing recurrence.
I needed to make a choice. The consensus was that this seems like a good one.
Because if my cancer comes back, it will be metastatic.
Diarrhea or metastatic cancer?
I’m going to take Door Number 1, Bob.
Let’s hope I have made the right choice.
If you are a woman in the US or Canada, please sign up for the Army of Women. You don’t have to be a cancer survivor. There are a lot of clinical trials out there that just need participation. We need a better understanding of cancer. Knowledge is power.
This entry was posted on Monday, May 9th, 2011 at 12:23 pm and is filed under Survivorship, Treatment, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Big, gentle, lopsided hugs, Babe. It’s been a pretty rough week or two. You know the Sherpas have got your back. XXOO
i think lopsided hugs are now among my favorite kind.
thanks, kathi. xo
Clinical trials are not approved by the FDA and even if they were, the FDA’s standards are “as long as the good outweighs the bad” and that sometimes means the side effects could eventually cause death but not by cancer. I got this osteonecrosis of the jaw from zometa and it’s actually aproved by the FDA. If the stores didn’t heal in my mouth, it would spread through my bones and my entire skeleton would become brittle and let’s just say, it would not be pretty. Do as few of those toxic drugs as possible.
this is an interesting trial because metformin has been around forever. there wasn’t even a phase 1 trial to determine toxicity because it’s a known drug.
my hesitation came from feeling like i’ve had enough crap in my body, but i honestly don’t feel like a guinea pig here. i can stop any time. i’m not trying to cure anything. i’m trying to prevent recurrence.
i hope that you are feeling better, rhonda.
When Wendy and I were going through her treatment, my guiding principle was no regrets…no should haves, could haves…I read whatever I could, to be as informed as I could be, weighed all the pros and cons…she participated in clinical trials, followed directions, ate right, exercised, positve attitude, traveled….she was the healthiest person I knew and in great shape,so we couldn’t lean on that. I took care of whatever she needed…and after 18 months I lost her….coming up on 2 years now, I am still profoundly sad, devastated, stuck…but I know that we did everything we absolutely could have…no regrets. It is my only peace. My love to you as you grapple with your decisions. There are never any guarantees but be informed and go with your gut. No regrets.
oh nancy. you always know what to say. thank you.
As always, everything is crossed that you never have to deal with this nasty bastard again. To say it was jarring to see such significant loss last week is an understatement.
I’m trying to learn more about all of this so I can try to be properly supportive of everyone & do what I can. And any information will help the fight here at home as we’re so new to all of this.
I have 2 questions, please, if I may. 1) Can you point me toward an explanation of how metformin helps and what types of cancer/tumors it can help impede?
2) I’m not asking this to be nosy, but because I care. If you’re not comfortable answering or if it’s touchy, it’s fine. You said if your cancer returns, it will be metastatic. I apologize for my ignorance, but how do your doctors know/determine this? I’m also asking to try & learn.
Sweetie, I am so sorry you’ve had a rough week. I can just imagine how many folks are hugging you over the wire. You and the friends & families of those whom we’ve just [collectively] lost. You’re all in my prayers.
thanks, lauree…
1) my understanding is that cortisol is believed to contribute to tumor growth, and that’s why exercise & reduced stress (ha!) are beneficial. i think the metformin lowers insulin levels, and something about the sugar metabolism involves cortisol production (??)… my science is very squinty and hand-wavy on this one…
(2) i had breast cancer & have no more breast tissue. if it returns it will do so in an organ or my bones.
thanks again for the hugs & prayers. <3
Thank you so much for elucidating!
Taking all the squintiness & hand-waviness into consideration, that all makes sense. And, duh, of course, how could I have missed that one? It’s so simple. I’m sorry if my question seemed insensitive, it just really didn’t click for me. My brain has been really out-to-lunch lately. This all helps, though. I’m slowly getting an understanding of all this nastiness. I sooo hope you never have to deal with this again.
Here’s an article from the NCI about Metformin….. http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2009/092209/page3
Thanks for posting the NCI information on this Anna. The anticancer effect of this drug holds promise for sure. I’m glad it’s in clinical trials.
Love you, Babe. Here’s to many more years of living and loving for us both! I’m sorry you’ve had such a hard week. God bless you, dear. <3
Big hugs,
Beckye
I wish there was a door number three we could all choose with a guarantee of no more cancer behind it! You are making a good decision for you and will also be helping others. Good luck and my best.
This is not an easy decision to make. Even though prevention of recurrence at any level might trump recurrence, the treatment still carries with it potential short- and long term effects that add to the ongoing challenges and uncertainties of life after diagnosis. All of these decisions are weighty, and I admire you for sharing this aspect of it. It’s been a sad and difficult few weeks. Hugs to you, Babe.
Way to rock it, Lani. I was impressed with what I heard about Metformin at NBBC and in other places; but as Gayle said, its hard to weigh out all the options. No regrets. Go with your gut.
Love,
jms
Hi! Occasional lurker finally speaking up here, just to say this: for lots of people, Metformin upsets their stomachs for a *while* and then their bodies adjust and voila, no more stomach upset.
My husband’s pre-diabetic and he’s on Metformin for that. It made him miserable for a week, somewhat yucky for another week, mildly yucky for a week after that, and hasn’t bothered him since. He’s been taking it for over a year now.
It helps if you don’t eat a lot of carbs, especially simple carbs and sugars — those seem to cause the most problems with Metformin. Also, eat it in the middle of a meal, with food before and after. He’s found both of those things extremely helpful, and I hope they’ll work for you, too.
Good luck! I love your blog.
i love my lurkers, because they often pop up with just the right info just at the right time! thank you.
CB, one of the things that I have reflected about my cancer treatment is that, at times, all the choices are, frankly, c**p. Your decisions are weighted with life and death statistics. With no guarantees. But you get informed, you make your decision, and then you do it. No regrets. That’s the only way.
Hope this proves to be a tolerable drug for you. All best, Sarah
exactly. crappy choices. *sigh*
thanks for the affirmation. xo
i am so excited to hear about the metformin connection to reducing recurrences. i learned 6 months ago that i have type II diabetes. no family history, very few risk factors. oncologist told me that my chemo regimen (dose dense A followed by C/T) was probably the culprit. also have liver and kidney damage…yes i’m triple neg…nearly 4 years out…i started taking metform to combat the diabetes but maybe it will serve two purposes…thanks for posting this!!