Beating Cancer

“hugs....”

“Mataharihiker, what's going on with you?
Bear, you have Hodgkins?
RichB, it's throat cancer?
Sorry, I'm on dial-up and it takes forever to
search the threads.

Mine is Multiple Myeloma, Stage III”

“Bear - I posted last night, but the post must have been lost in the change-over.

I was definitely bummed to get your news. You deserve a break and this sucks. I still think you can beat this thing, but it bites to be back in the fight so soon.

If you ever want to come up to Boston for escape or to get an eval or treatment from one of the hospitals here, let me know. There is definitely a room in the house where you and Dani could stay a spell. I can certainly scope out who are the best people - I have a few friends and cousins who are great at finding out who the best medical people are and finding ways to get appointments. If there is anything else I can do, let me know.

David”

“BM, somehow I missed this. I am sorry to hear that you have to go through all this again. Hopefully your ins status has changed and that coverage wont be as much of a concern.

I like the flags mata. Fly them with hope and prayers.

LeSubtil, glad to hear that you and Penny were able to hike at PR wonderful place. I hope that the remisiion side wins out for you. Sorry about your hair, I know how much you loved it. Jut pretend its like the witness protection plan, or you are stunt doubling for me.

Peace Prayers and Good health to you all.”

“Don't know what happened to my post from other other day. I suppose it's floating around cyberspace somewhere. Anyway, sorry to hear the news BM. You've knocked back the cancer once, you can do it again!

Good to hear from your le subtil. I have been wondering about you.

Cool flags mata!”

“Thanks y'all. That's a beautiflu view, MHH.

SS - yeah. The med assistant almost had a heart attack when she saw my numbers. And now sleep escapes me. I might start taking some drugs.

Ped - thank you so much. we'd love to come up some time.

Le - multiple myeloma sucks. I had Hodgkins IV. Went through chemo from 11/05-4/06.

And Yes. Mine is curable. If it doesn't kill me. It was curable first time around. Odds are in my favor, still. It's not very comforting second time around.

Sorry. I'm gonna be a whinny #&%!$ about this for a bit.

I wish I could find my "happy place".”

“Bear, I'm not sure myself what is worse the first time around or the second. I know I was annoyed last year when I got throat cancer again because the chances of getting throat cancer again back in your larynx 7 years later is zero or was supposed to be. I think even my doctor was shocked because that was something that wasn't supposed to happen. I wasn't angry when I got bone marrow failure in 1998, but I was really angry when I got throat cancer 9 months after I had a bone marrow transplant. My blood counts were finally normal again and now I was choking on a tumor in my throat. Did that ever suck! After my last two tongue cancers, I don't get shocked anymore and I'm beyond the point where I even get angry. If I didn't do that, I'd walk around being miserable and I'm not letting that happen, no matter what. One thing that always helped me was that each time I got cancer, fortunately there was always some treatment to get rid of it so I focused on that. Even though I'm tired of surgeries, losing body parts, complications, traveling, pain, etc., I just suck it up and do whatever it takes to get cancer cells off me as long as my doctor tells me he can get rid of them. So far it has worked for me.

Le Subtil, I had myleodyplasia, a form of leukemia, first. Then throat cancer, then skin cancer, then tongue cancer, then throat cancer again and then tongue cancer two more times.
last edited: 7/14/07 3:03:56 PM”

“Cool flags Matahari and the bird feeders are nice too.”

“I had stage 4 tongue cancer, leSubtil and while that is gone, as far as I know, the after effects of the cure is trying to kill me...the latest dance is pneumonia which I give myself about every 2 months...it has been frustrating but sooner or later my body will train itself how to avoid aspirating food or liquids...my job is to keep strong until it can get its act together...

I have stopped going to doctors...I couldn't live through another bout of chemo or radiation so why bother...if the cancer comes back it comes back...knowing it's there won't make me better...maybe I lived in India too long but there you have it....

I've had to deal with much less than either RichB or Bearmagnet...I have been very lucky...
last edited: 7/14/07 4:16:54 PM”

“All of you amaze me. Strength and health to you all.”

“Everybody will kick cancer's a$$!!! I believe it!
last edited: 7/14/07 4:48:24 PM”

“Ok so it sounds weird... but they have discovered that laughing hard for about fifteen minutes a day has an amazing effect on the respiratory system (pneumonia) the immunse system (cancer in general), the cardiovascular system, (removing all them nasty buggers from the systems) and the emotional systems, (it is reflected that when you are down emotionally you can be down physically as well). Norman Cousins outlived his prognosis hugely by watching a marx Brothers movie a day. So find something that makes you laugh and have at it.”

“So the protocol is GVD with the monoclonal antibody SGN-30

Gemcitabine
Vinorelbine
Pegylated Lipsomal Doxorubicin

It's an experimental treatment. None of the drugs are FDA approved for Hodgkins. The Mab is experimental, attacks cells expressing the CD30 antigen (Hodgkins B-Cell.

WTF am I doing?)

No radiation. Not sure what stage I'm in.”

“Good luck and best wishes to you all. Your attitude is a great example to everyone.”

“Bear, I just don't know what to say. All sorts of trite things come to mind, but they seem so inadequate right now. I will have you and Dani in my prayers. May you be well.”

“Thanks. It's a clinical trial so I may get a placebo instead of the Mab.

#&%!$heads.”

“Placebos for Cancer patient clinical trials? The only benefit to me is I have a 50/50 chance of getting an experimental Mab that may help, may not help, or may interfere?

Why should I participate?

The hardcopy informed consent for clinical research form i was given said nothing about a placebo. Found that looking up the protocol on the NCI site.

I think I'm getting really pissed off.”

“Bear: Is the control group a no treatment group ?
Is the control group really 50%?

I'd hope the control group was not mere placebo but some other treatment regimine. If they had to have a placebo control, I'd hope the placebo group was smaller than the treatment group.

I trust you will be asking tough questions. It really might help to get a second opinion from someone who will look at the study protocol.”

“Control group would get the GVD chemo with a placebo instead of the monoclonal antibody SGN-30.”

“Lots of hugs......”

“Bear, I'm not sure if this will help much, but I had the Doxorubicin as part of both treatments. It has a reputation for being harsh, but I had near complete response and very little of the expected side effects.

Wow, you all have been through some serious #&%!$. One of my biggest fears is that I'll win this battle only to come down with some other cancer right away - I guess it happens a lot.

I'm sorry we're all here under such circumstances but I'm so glad to talk to other people with similar challenges. I'm praying for all of you.

Birch - thanks for the note. I like the witness protection idea. Maybe I can get a t-shirt printed up ( like Homer Simpson)

Tomorrow I go for a bunch of tests to see how the last treatment worked. Lots of blood and urine tests, an echocardiogram to see how badly my heart has been damaged by the drugs, another MRI to see why my left side is numb, and a bone marrow biopsy to find out exactly where my disease is. The biopsy always hurts, this will be my 5th. The biopsy got me last time - the blood and urine tests showed complete remission but the biopsy showed trouble.

Next Tuesday is my outpatient "conditioning" (melphalan - atomic bomb chemo to kill all of my marrow). Wednesday I get admitted, Thursday I'll get the transplant; Day 0 of my new life.

Best of luck to you all.
Craig”

“So the question is: are there significantly better alternatives for you (than GVD chemo) available without being in a clinical trial.

Instititutions and individual physicians often have major interests in enrolling people in clinical trials. I assume your insurance will pay for a second opinion from someone with no connection to the trials.”

“I hate that this thread has a need to exist. You all are inspirational. My prayers are with you. BM - I don't think you're whining at all. I'd be doing 10x more than what you're calling whining.”

“You guys whine all you want.

He11, I do.”

“Saw my ENT surgeon today and popped in on the clinical RN. Everyone on gets the antibody. GVD has shown to be less toxic than other treatments with equal response. The study is to see if the antibody does anything with GVD. I go for a BM Biopsy on Friday.

Pathology report indicates I have "recurrent" Hodgkin. Now if I can figur out if that means "refractory" or "relapsed" all will be good.”

“So Bear - if I understand correctly - if you do it, you will definitely get both GVD and the antibody(?).

I agree dayhiker: For me, it's the best and the worst thread on TT. Worst because of the reasons for it and the bad news posted. Best because of the value and human connection. When I've had scares - it helps me to have this space. If I ever get really bad news, this is one place I'll turn. If I'd known, I would have tried to get one like this going when my biopsy showed malignancy back in '01.
last edited: 7/16/07 8:36:45 AM”

“I don't think it's whining when you're talking about it, especially with people who know just where you're coming from. I can empathize, but ultimately, don't have a clue. It's sort of like women getting together and talking about how bad us guys are. You can all relate. The stakes are a bit higher with what yall are going through though.”

“Nope, I don't hear whining either.  What an impressive group. You guys get out there and kick its ass again, dammit.”

“That's correct, ped. And the ab, plus 1-2 of the drugs are provided, free-o-charge. Too bad the zofran won't be free. Might have to look into "medicinal" ganja.

;)”

“Damn BM. Treebait told me about this when I got off the trail Friday. What a bummer.
I'm sorry you have to go through this again.

You did it once, you can do it again.

Keep fighting guys.”

“bearmagnet...did you know that Vinorelbine is obtained by semi-synthesis from alkaloids extracted from the rosy periwinkle? let's hear it for flower power! my sick mind found that funny in a weird way...

are they giving that in combination with Gemcitabine?


leSubtil..YIKES was what came to mind when I read, "Next Tuesday is my outpatient "conditioning" (melphalan - atomic bomb chemo to kill all of my marrow). Wednesday I get admitted, Thursday I'll get the transplant; Day 0 of my new life."

The idea of killing all ones bone marrow sounds like a life-threatening thing...I know all our cures walk a fine line between life and death but your seems to be pretty hairy...

hugs and bon courage to all”

“Le Subtil, good luck with the transplant. Are you having an autologus transplant or an allogeneic? I had an allogeneic and my brother was a perfect match. I didn't have time to go looking for marrow on a list so it saved my life. Even though they destroy your bone marrow, it's good thing. I figured it was diseased anyway so good riddence to it. It was useless in my body. Getting rid of it makes room for the new cells to grow too. Try to keep eating during your transplant no matter how sick you feel. I did that, it wasn't easy, but it helped me. Eating keeps your strength up and when they saw me eat so well, I got to go home after only 29 days and lost no weight. I never had to go on IV nutrition. That stuff is hard on your kidneys. I already had enough crap going through lines in my body and I didn't want that. I've read that before a transplant, you have to be like an athelete in training and I believe it, but I was too anemic to exercise. I was so weak from anemia before I got there I couldn't walk a hundred yards, but I ate as much as I could before I got there to have good margin just in case and it pays off.”

“Thanks hpm. That's very interesting, MHH. Save the rainforest, dammit!

And yes, destroying the bone marrow is intense. Way back in the day I was working on BM/OrganTx research. I would give the rats what was called a lethal dose of radiation to destroy all their bone marrow. I would then transplant an allogeneic/autogeneic BM mix in an attempt at "re-education" of the immune system.

If things didn't go well than a rat might end up with too few transplant cells. They would die of anemia.

Human transplants are much safer, of course. ;)

Still intense. If my hodgkins is in my marrow then I will need a transplant.

Karma?”

“edit: I'll get GVD and the antibody all in the same 4 hourish session, MHH”

“Shiite - they oughta give you free medical ganja just out of a sense of empathy. Its not like everyobody will want to go through a second round of chemo just to get it.

We went to a party Saturday night for a friend of Ellen's. Her friend celebrated an end to 10 months of chemo for breast cancer. Her hair is just starting to come back and her body looks like its on the mend. She's only 29, married for three years. Had some eggs frozen before getting chemo.”

“Bearmagnet, you dirty rat!

Dog speed!!”

“I din't bank my boys before chemo. I'm a little worried now. Not sure I can bank or that they're any good.”

“I love bone marrow biopsy's. especially when a post-doc does it.

And the research nurse is a retard. There will be a placebo group. The protocol for this phase has been out there for 6-8wks. Waiting for IRB approval. My doc has been in contact with the PI trying to get the study going ASAP. If it's not approved in 2weeks then we go without the 50:50 chance of the antibiotic. Can't get a MUGA/CT until I sign. If I go without then I can get treated within 2 weeks, not less than 1week.

I'm a little pissed. But Kind of want the antibody.

Time to start drinking.

Oh yeah, I'm at least stage III”

“Geez BM, you don't need this crap. Nobody does.
Stay strong, and don't drink the cheap stuff.”

“Hang in there Bear. Bone marrow biopsies do suck and hopefully you won't need too many of them.”

“My tests Tuesday took 12 hours. ECG, blood work, visit with the chemo doc, blood work again, visit with the transplant doc, even more blood work, then a bone marrow biopsy.
All of the tests came back good. The biopsy
showed no trace of any abnormal cells, they call it "complete response". They don't use the word remission...

So you'd think I'd be done, at least for a while, but the docs insist I have very agressive disease and that I would relapse in a matter of months if I didn't continue treatment.
Their choice of treatment is the autologous
stem cell transplant, using the stem cells I harvested earlier this month. We'll probably follow that with another transplant in 2 or 3 months. If/when I relapse from that, I'll be looking for an allogenic transplant with either my son's imperfect match or an unrelated donor perfect match, if there is one. An allo transpant is high risk in my case.

But I feel great. I have a good chance of having years of decent quality life, maybe lots of years. I don't have much of the bone lesions that most multiple myeloma patients get. I don't have much neuropathy yet. I'll be in or at the hospital a lot until the end of the year, but it shouldn't be really too difficult or painfull. I feel pretty lucky.

They suggested I set up a blog at www.carepages.com. I'm not sure if I'll be able to keep it up, but my page is craigf07page.

I hope things go well for you bearmag and richB. And, I hope everyone else here stays well and never have to deal with this crap!”

“Sorry you have to put up with this sheet Bear!

You are right not to wait in IRB limbo for too long. Might be useful to find out when the board will meet and how long they usually take to approve.”

“Ped - thanks. My doctor is on everyone's ass. She's an aggressive mofo and I'm glad she's on my side. ;)

Le - Man I'm sorry. I volunteer in patient outreach for LLS. Multiple myeloma sucks ass.

I am so sick of being prodded, poked, cut, injected, etc.

if I could ask for one gift it would be never to have to deal with this. My 2nd choice would be to survive this. My third choice would be to survive this and not need a bone marrow transplant.

Is that too much to ask?

My current timeline:

June 11th - PET Scan

June 26th - PET scan results (atypical cells in neck) discussed with Oncology Doctor. Doctor discovers swollen Lymph Nodes in Left armpit through palpitation.

June 28th - MRI Scan for pinpointing lymph nodes.

July 1st - Consultation appointment with Surgeon

July 6th - Surgery - Lymph Node Biopsy

July 13th - Oncology appointment - Pathology confirms Cancer Relapse

July 16th - Stitch removed from neck. Surgeon relieved I'm aware of the results.

July 20th - Bone Marrow Biopsy

6/11-7/23: 32 days to confirm relapse. 10 Days and counting...”

“LeSubtil - I signed up and bookmarked your page.

I'm wishing you every blessing.”

“6/11-7/23: 32 days to confirm relapse. 10 Days and counting...

Man, this must be a tough wait. I hope it comes back with a good report.

My wife and I were talking just the other night and she was saying how she heard the marrow harvesting was as bad as it used be. We were talking about going in and being matched.”

“It sucks. I try not to think about it. Going untreated as it spreads by the second......I'm killing my liver at an increasingly quick pace. You'd think they could come up with some sort of "pre-treatment" medication to slow it down.

And harvesting is much nicer now. Don't be scaring all the nice, generous, civic minded TT'ers, dammit!

:D”

“Le Subtil, that's sounds like a long road to travel to get well again, but one step at a time and you'll get there. I'll check out your care page soon.

I hope to meet all of you on the trail someday when we get our health back.”

“The harvesting was (for me) a piece of cake.
I gave my self shots of Neupogen (A colony stimulator) subcutaneously (in my belly fat) for 10 days. The actual collection was done from the blood - I had a port but they can use 2 IVs. 1 out, 1 in. A small centrifuge type machine seperated the stem cells and the rest is returned. It's called apheresis.
It didn't hurt or even make me uncomfortable. I slept for the 4 hours it took.
I do remember, just before the apheresis, my bones got quite sore from being so full of stem cells. This was only for a few hours and the technician said it was actually a good sign.”

“post-doc
IRB
PI
MUGA/CT
autologous
allogenic transplant

i dont know what any of those words mean, but heres to one day never having to say them, hear them, or know what they mean

~raises glass~”