Eli
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Jose, my heart breaks for your loss. You did everything humanly possible to help your dear Carmen. I know she went through so much suffering. May she rest in peace, in a better place without pain. Please accept my sincere condolences.
Eli
Pam,
In Lauren’s case, 1 week on and 1 week off is one cycle. Because she sits in the chair one time per cycle, you can say that she will have 8 more rounds or 8 more cycles… doesn’t really matter.
The terms matter more in a 3-week cycle (2 weeks on, 1 week off). 8 cycles means 16 trips to the chemo chair.
I hope I didn’t confuse you more. If I did, I am sorry!
Eli
Hi Melissa,
The term “cycle” refers to the whole clump as you put it. 2 weeks on, 1 week off. Fourth dose of chemo is the last treatment of cycle 2.
The term “round” isn’t an official medical term. Medical papers don’t use it. I would ask the onc what he meant by it, one treatment or a cycle. I guess he meant a cycle, but it doesn’t hurt to ask.
Hope this helps,
EliHi Lisa,
I don’t understand this “missed window of opportunity” stuff.
My wife had her surgery on July 4th. She started chemo-radiation on Sept 12th. That’s 10 weeks delay, which is fairly typical after Whipple. Our medical oncologist and radiation oncologist were in no rush to start chemo-radiation. They never mentioned “window of opportunity” or anything of that nature. They wanted my wife’s incision to fully heal before going into further treatments. We had to push them to start a.s.a.p.
When my wife finished chemo-radiation, we saw more of the same attitude. Medical oncologist delayed the next chemo regimen by 2 months. He wanted to see a full recovery from chemo-radiation before proceeding with more chemo. Again, he never said anything about “window of opportunity”. My wife started systemic chemo at the end of December, five and a half months after her surgery.
Bottom line:
It’s good that you are making plans to seek a second opinion.
Best wishes,
EliPercy,
Thank you for your excellent summaries. I appreciate the effort you put into keeping us updated.
Just a friendly reminder if I may: please remember to take a break and relax once in a while. Your own health is the most important thing of all.
Take care,
EliIt is heartbreaking to hear about Jim. He was a very special member of our extended CC family, much loved and well respected for his thoughtful and compassionate contributions. My sincere condolences to Jim’s family.
Hugs,
EliPercy, you can’t be further from the truth. I have a body complexion of a q-tip
Glad to hear that you enjoyed the cartwheels I did for Susie! Clean scan, that’s fantastic.
Congratulations, Susie! So happy to hear about the clean scan. Here’s the picture of me doing the cartwheels
(okay, okay, it’s not really me. I have a head full of hair. My midsection is a lot slimmer too)
If you remember my wife’s case, she is right behind you on the journey. Surgery in July 2011 followed by radiation and chemo. Her last scan was early in April. The next one is on July 4th, a regular work day here in Canada. 3 months in between.
The last time we saw our oncologist, he said he wanted to scan her every 3 months because she is such a high risk to relapse (due to positive margins and nodes). At some point we might reduce the frequency of the scans. In my wife’s case, I wouldn’t be comfortable going from 3 months to 6 months right away. Maybe 3 months to 4 months to 6 months. Can’t really comment on your case, because your risk factors are not the same. Listen to your heart and do what feels right to you.
My wife kept her port for now. The oncologist said let’s wait for another clean scan; if the scan in July is clean, get the port out. My current thinking is… the port doesn’t seem to bother her in any way, so why rush to get it out? It only requires one flush a month… not a big deal. I admit I’m superstitious about it. I’m afraid that removing the port too soon might jinx her.
Best wishes,
EliOh, one more thing:
Before my wife started chemo, we toyed with idea of trying Do-It-Yourself Hyperthermia therapy in combination with chemo. Many commercial spas have dry infrared saunas that are capable of raising body temperature:
http://en.wikipedia.org/wiki/Infrared_sauna
Our idea was to do chemo first, then go straight to a spa and spend another hour in the sauna to raise body temperature. We never tried it though, because our chemo sessions lasted too long (5-6 hours). We were too tired to go anywhere but home. My wife was also afraid of catching germs in a public spa, after her blood counts dropped too low.
Hi Roni,
Hyperthermia therapy is interesting (at the very least) because of “Lance Armstrong effect”. See my older post where I explained what “Lance Armstrong effect” is:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57649#p57649
CC patients may*** be eligible for an ongoing clinical trial of hyperthermia given concurrently with regular chemo:
http://clinicaltrials.gov/ct2/show/NCT00178698?term=Hyperthermia&recr=Open&cond=cancer&rank=1
*** I wrote “may be eligible” because I don’t know for sure. I found this trial when I did a search for ongoing trials for extrahepatic CC. The description of the trial mentions gastric cancer but not CC specifically.
As to the German clinic you linked to, take a look at a recent discussion started by Jose:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8091
Hi Venkat,
Just wanted to add that Mayo Clinic is *by far* the most experienced hospital that performs LT for CC.
Here’s a recent article written by Mayo doctors:
http://www.ncbi.nlm.nih.gov/pubmed/22504095
Note the stats:
They examined 287 patient cases from 12 US centers between 1993 and 2010. All patients had liver transplant for perihilar CC. Out of 287 patients, the vast majority (193 cases) came from 1 center. The abstract doesn’t say which one, but I’m almost certain that it was Mayo Clinic itself. After all, they are the ones who invented “Mayo Protocol” of treating CC with LT.
Fingers crossed that your friend is eligible for LT. Please keep us posted about his updates.
Best wishes,
EliKathllen,
I am sorry we have to welcome you to the forum under these circumstances, and I am so deeply sorry that Dr.Kato could not proceed with the ex vivo surgery. Thank you so much for gathering your strength to share your experience with us.
Hugs,
EliP.S. To our members who don’t know what ex vivo surgery is, here’s an article in NY Times that explains what Dr. Kato does.
http://www.nytimes.com/2009/12/15/health/15surg.html?pagewanted=all
Hi Venkat,
Only a small handful of hospitals do liver transplantation to treat cholangiocarcinoma. Off the top of my head: Mayo Clinic, Barnes-Jewish, University of Michigan.
So the first question to ask:
Does Moffitt Cancer Center use LT as a treatment option for CC?
If they do, ask them whether they considered him for LT. If he is not eligible, ask them to explain why. The eligibility criteria is very strict.
If they don’t, he must get a second opinion from one of the hospitals that do LT for CC.
Eligibility criteria should be fairly similar across all hospitals. For the reference, here’s University of Michigan protocol and eligibility criteria:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4527
Eli
ADDED:
Here’s a very good article about liver transplantation for CC:
Curing cancer by replacing livers!
http://www.ksat.com/news/Curing-cancer-by-replacing-livers/-/478452/9222812/-/gsrjbc/-/index.htmlThe article touches on the eligibility criteria:
Quote:What are the criteria for a patient who would be able to have the transplant?Dr. Sonnenday: Patients for whom we think liver transplantation can be a treatment for their bile duct cancer are subjected to two different levels of selection criteria. The first is about their cancer: is the cancer confined to the liver and the bile ducts itself? We do a series of tests to make sure that there’s no evidence of cancer elsewhere including the surrounding lymph nodes. The patient can’t have an appropriate surgical resection option. The reason that we exclude patients who have a resection option even though the outcomes could at least theoretically be as good or better with transplant is that we just don’t have enough transplanted organs available for all the people already who need one. To offer liver transplantation to people who have other treatment options at this point we don’t think it’s appropriate. So, appropriate patients have to have bile duct cancer confined to the liver and bile ducts and not have a surgical resection option.
Then they have to be a transplant candidate by all the traditional criteria. They can’t have other medical conditions that would prevent them from getting the most appropriate outcomes after transplant. Patients with other cancers, or patients with advanced heart disease or lung disease — things that would make the recovery from transplant more difficult – are not candidates for liver transplantation. Those are the same criteria that we use for any of our patients who are being considered for liver transplant.
BTW, Dr. Sonnenday posts here from time to time. If you don’t get the answers at Moffitt, consider contacting Dr. Sonnenday for a second opinion about LT.
Hi Roni,
I haven’t heard of it. So the first thing I did was look it up on Memorial Sloan-Kettering web site.
http://www.mskcc.org/cancer-care/herb/insulin-potentiation-therapy
Here’s the info for consumers:
Quote:How It WorksBottom Line: Insulin Potentiation Therapy is not effective in treating cancer.
Insulin potentiation therapy involves administering insulin at the same time as chemotherapy drugs, with the idea that lower doses of chemo are needed because insulin lets more of the drugs enter cells. However, this has never been proven experimentally. In general, insulin should not been taken by non-diabetics because it can decrease blood sugar to dangerously low levels, causing symptoms such as headache and delirium.
Purported Uses
* To treat cancer
There are no data to support this claim.Research Evidence
No clinical trials have tested the safety or effectiveness of insulin potentiation therapy.
Do Not Take If
You are taking hypoglycemic agents (IPT can have additive effects).
Side Effects
Low blood sugar
And here’s the summary for healthcare professionals:
Quote:Clinical SummaryInsulin Potentiation Therapy (IPT) is an alternative cancer therapy that uses insulin to potentiate the effect of chemotherapy and other medications. This therapy was developed in Mexico by Dr. Donato Perez Garcia in the 1930’s and has been used together with other unconventional therapies for many years (1). Advocates of IPT believe that cancer cells consume more sugar than healthy cells and are therefore more sensitive to insulin and insulin-like growth factor (IGF) (2) (7). Insulin is also believed to increase the permeability of cell membranes, increasing the intracellular concentration and cytotoxic effect of anticancer drugs (1). According to the theory underlying this therapy, if cancer cells can be activated by exogenous insulin, a reduced dose (up to one-tenth the normal dose) of a chemo drug can provide the same cytotoxic effects with less severe adverse reactions. No clinical trials have been performed to validate these claims. In addition, the pharmacokinetic profiles on concurrent use of insulin and chemo drugs are lacking and it is unclear whether the insulin also potentiates the toxic effects of chemotherapy on healthy cells.
Although proponents cite anecdotal case reports suggesting that IPT may be effective, there are no data comparing the efficacy of IPT to conventional chemotherapy. Most of the medications used, such as insulin and other chemo drugs, are approved by the FDA, but the IPT clinics administer them “off-label.” Some clinics that administer IPT are not operated or staffed by oncologists. Side effects of IPT include hypoglycemic reaction. A systematic review of 21 studies showed a correlation between circulating levels of IGF-I, IGFBP3 (IGF-binding protein) and an increased risk of common cancers (
.Follow the link above to read more details on the MSK web site. You may have to accept their Terms&Conditions before you are able to see the IPT page.
I also searched IPT on the Quackwatch web site. It’s a web site that examines “alternative” therapies to see if they have any scientific evidence to back up their claims. Sure enough, they have an article about IPT. Read it and judge yourself.
Why You Should Stay Away from Insulin Potentiation Therapy
http://www.quackwatch.com/01QuackeryRelatedTopics/Cancer/ipt.html
