Another Gemzar Update - 1255428

slimer
Posts:43

I am on monotherapy Gemzar (gemcitabine) as first line treatment. I have been on it 18 months and completed my 60th infusion this last Friday. I may now have surpassed even the legendary D, Catdancer’s husband and my inspiration.

I reported here the dream Jan 10, 2013 PET/CT results I obtained.

As I approached the end of another round of Gemzar, my onc told me he didn’t “trust” my last PET/CT because the radiologist compared to my last PET/CT a year earlier and not to the Sept. 2012 CT which found growth in mediastinals of “at least 20%" (CT findings), and “sutle luciencies” in my pelvis and sacrum. “Where did the progression go” my onc asked, meaning the “20%” growth in mediastinals.
Still don't understand why he considered that bogus.

So my onc said he wanted a separate CT w/contrast and a separate PET/CT by two separate radiologists as I approached completion of my 7th Gemzar round. I took them on 3/21 and 3/26. The results are in and confirm no further shrinkage of primary, but both confirm no hypermetabolic activity in measurable nodules or any lymph nodes, and the mediastinals are “normal size”.

So all’s well that ends well and I continue on my gentle Gemzar on which I feel absolutely normal. If they didn’t tell me I had Stage IV lung cancer I wouldn’t know it. My only disappointment is no further shrinkage in the primary, but it happened once and maybe it can happen again.

One thing I need to mention is that I use a ton of supplements. I have refrained from mentioning supplements here in deference to Dr. West and his colleagues who are conventional oncologists. But it is part of my story and I think play a role in potentiating Gemzar and protecting me from the toxicity. Gemzar, an Antimetabolite, does not depend on provoking an oxidative reaction to work, and therefore anti-oxidants can assist rather than block. At least my experience indicates they don't block it.

Forums
Full Archive

Reply # - April 6, 2013, 02:31 PM

Dr West
Posts: 4735

I'm glad you're doing so well. I appreciate your consideration and don't want to say that I or the other faculty here are viciously anti-supplement. I think I can speak for all of the faculty in saying that none of us thinks we know everything about cancer -- but the mindset of conventional onc is that something isn't beneficial until it's proven to be so. In contrast, for many supplements, the presumption is more likely to be that these are beneficial unless evidence proves against it. I tend to really want to be cautious in recommending things that aren't really established and may be harmful -- but that's a mindset, and it's not everyone's.

I don't think I or other faculty here want to make folks here feel that taking supplements is a betrayal. It's just that the faculty here can't recommend them or speak much to their efficacy when, by and large, they remain poorly studied.

But the main thing I wanted to say is "congratulations!".

-Dr. West

Reply # - April 6, 2013, 09:07 PM

catdander
Posts:

Hey hey slimer congratulations! I don't want to burst any of your bubbles but I just had to add up the months and D was on Gem for 19 months. So you have one more month to go. Dang it, I hate when my competitive side shows. But I'm thrilled it's working so well for you. And so few side effects. That's great. How are your veins?

CONGRATULATIONS!
Catdancer

Reply # - April 6, 2013, 11:18 PM

slimer
Posts: 43

Hi Catdancer,

Hmmm, another month. But what about the 60 infusions? - as first line, I'm on a 3 weeks on 1 off schedule. D was probably 2 on and 1 off, which is the usual "salvage" use of Gemzar. So there! I guess when cancer becomes our lives, there is where our competitive natures now reveal themselves.

And funny you ask about my veins. About 10 weeks ago I had back to back IV blood clots first in left and then right arm. So handwriting was on wall - Power Port time. Took six weeks to really heal up and I hated the alien in my chest, but now that I forget about it and no twinges from it, the infusions are easier, faster, and no burning. Held out as long I could.

I'll be looking for D's next clear scan, and hoping for some shrinkage again for myself, but I'm realistic and just grateful for the easy time I have had so far staying alive.

Reply # - April 8, 2013, 01:18 AM

certain spring
Posts: 762

Slimer, it is fantastic to hear you are doing so well.
Since you mentioned supplements, and since Dr West doesn't seem to object, it would be interesting to know what you are taking.
I sympathise about the veins - mine are shot to pieces, and everyone behaves as if that is my fault!
Best wishes for your continuing good health.

Reply # - April 8, 2013, 08:19 AM

catdander
Posts:

Slimer, The typical cycle for single gemzar is 3 on 1 off. D's blood levels weren't good enough to withstand that so he quickly moved to a 2 on 1 off. I don't remember number of infusions I think we figured it out once but the months are right. But I know for sure we should be thrilled to have the opportunity to need a calculator to do the math...and I am.
Your poor veins :( . D's are shot to pieces too.

Reply # - April 8, 2013, 09:56 AM

slimer
Posts: 43

certain spring,

I do too much to list here, and despite the fact that Dr. West in not "viciously" anti-supplement, I don't think this site is the appropriate venue to discuss supplements. I would be more than happy to share everything I do with you if there is way to share email addresses. I have everything I currently do as my "home regimen" on a Word Doc, along with explanations of dosing.

I do participate in a more free swinging on-line site called Inspire. If you join up there, it has an internal private means of "friending" a member, and if in that "friend" request you give me your email address, I'll reply with the Word Doc attached along with an easy deep breathing exercise I do many times a day. My nomme de Board on Inspire is "slimesnake". But if you want to put your email address here, I'll use it to respond.

Catdancer,

Perhaps Dr. West or one his colleagues can chime in here on what their understanding is for the schedule for Gemzar as second, third, fourth line, or what is known as "maintenance". I am in contact with a number of Gemzar responders on 3rd line and 4th line, and some on "Gemzar maintenance" after responding to either Carbo or Cisplatin + Gemzar, and they on now on a 2 on, 1 off schedule. A woman in Australia told me national health service there uses a 2 on and 1 off Gemzar schedule as first line!!

I have a more than an academic interest in the answer because I have been thinking of asking my onc if I continue to be "Stable" without renewed shrinkage to go to a 2 on and 1 off schedule to almost double my time off to LIVE, to boat, fish and to travel. One of the Pharm Ds at my HMO told me it didn't matter if I missed a dose to travel because I am on "maintenance", I guess because Gemzar is not expected at this point to continue to shrink my cancer. My onc told me there is no clear definition between first line and maintenance in my situation. In any case, it would be helpful to hear from an onc here.

Reply # - April 8, 2013, 01:36 PM

catdander
Posts:

Definitely will ask a doctor to chime in here. I hope you find yourself in the position to move to less. I know i was happy that D was put on the 2 on 1 off after his first cycle.
Boats fish travel LIVE sound fab. I don't fish myself but I like watching D fly fish when we are out in canoes.

Reply # - April 8, 2013, 02:03 PM

dr johnson
Posts: 9

"2 on, 1 off" is a very common way to prescribe Gemcitabine--I prescribe this way myself in both first and second/third lines (slightly different dosages...) I'll add that in the 2nd/3rd line setting, I've also prescribed it d1, d15 when patients have trouble missing doses due to myelosuppression...Slimer-I'd definitely share your "non-academic" reasons for your interest in Gemcitabine dosing...that sort of reason is very important to me as an oncologist.

Good luck,
Dr. J

Reply # - April 9, 2013, 05:34 AM

b-1 83
Posts: 19

Sounds like we have a Gemzar rock star on our hands! Way to go!

Just a note: I've never seen any of the docs down play supplements as long as 1)they are not known to be combative with the chemo (that CAN happen) and 2)they are not used as a sole treatment - face it there are schisters out there that will tell desperate people that cactus juice and gnat knees will cure cancer.

Reply # - April 9, 2013, 09:32 PM

laya d.
Posts: 714

B-1 83 - - Just wanted to say that I'm so happy to hear your voice here. . .It had been a while. I hope you are faring well. . .

Laya

Previous PostNext Post