TNBC not responding to treatment/Pemetrexed?

Hi, everyone. I posted recently that I was a TNBC patient with mets to my bones, spleen, lung, and pleural space. I was started on cisplatin and etoposide. I recieved one and a half doses of the cisplatin and two rounds of etoposide. I had trouble with all the fluid they had to give me with the cisplatin.

I saw my oncologist on Monday, before I was supposed to receive the second half of my cisplatin dose (he was dividing it over two weeks) and showed him a rash that has developed on my right flank. He thinks the cancer has invaded my lymphatic system and the rash is skin mets. They did a skin biopsy and will have the results on Monday.

I have also had problems with pleural effusions since January when they drained 400cc from my right pleural space. At the beginning of April they removed a little over a liter of fluid from each side and then this week removed 1200-1400cc from each side. The fluid in April tested positive for malignancy.

My breathing is better since they removed the fluid this week, but my doc put me on O2 4 liters around the clock. He says that the development of the skin mets and my increased shortness of breath (which is still there, but a lot less now than before they removed the fluid) means that the chemo I was on was not working.

I will see him again on Monday. He will have the results of the skin biopsy and of a chest CT scan they did this week.

He mentioned hospice twice during this week's visit. I told him I still felt too strong to just give up. I know they are running out of things to try. I've had ACT, Abraxane, Avastin, Xeloda, Navelbine, Cisplatin, and Etoposide. I called his nurse yesterday during a panic attack and she said he had written about trying a drug called Pemetrexed in his notes. I have never heard about this drug and there is not much info. about it and breast cancer on the Internet.

So, I am just looking for any experience or advice anyone has to give. I am so sad and scared and just don't feel ready to give up hope yet.

Thanks.

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8 replies. Join the discussion

Darling, dont you DARE give up hope!!!
I too am TN. I was dx last July, and already have bone mets. What a sod!
You're my forerunner babe!
susann x

PS How long is it since your original diagnosis?

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I was originally diagnosed in November 2008, just 18 months ago. I have been in constant treatment since and nothing seems to work. I am in a very weird place. Trying to come to peace with the idea that I probably don't have much longer based on the resistance and aggressiveness of my cancer, but just really, really not ready yet. I have the most wonderful family - my husband and three children, a daughter, age 22, and two sons, ages 20 and 18. My sister's family lives in NJ, but she has been out every month since I've been diagnosed. My husband and I and our youngest son went back this past Christmas and had a wonderful visit. My sister arrives Sunday evening again and her family is coming in on the 24th for our youngest's high school graduation.

So, I am lucky that I have had a wonderful life since meeting my husband and starting our family. I have many wonderful memories and have gotten to see my children grow up into the most amazing young adults. I have no regrets about the past. I just don't know how to get over being sad about what I will not get to be there for. I don't know how to let go of all the dreams I had for the future. To grow old with my husband, best friends with my sister, the best grandma in the world. How do you let go of that?

I am not scared of the dying part and my husband and I have made plans. I bought toy chests and filled each of them with books for each of my children's grandchildren. My daughter and I went wedding dress shopping even though a wedding is not in the plans for another year or two. I'm not in denial. I'm just not ready and don't know how to get to a place of peace with all of this. I cry way too much and want to make this easy and not a horrible memory for my family.

I will post what happens when we see my oncologist on Monday.

Thanks for your reply.

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Mehitzel, I cried when I read your reply post, not because of what is happening with you, but because you worded it so wonderfully. You took the words right out of my head and put them down on paper. The fears, the dying, the sadness of what we will miss, and especially the memory we may leave for our family.

Praise God for your courage and please do not give up hope.

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Don't give up folks. You may be too close to the situation to realize there are other options. My wife's 4.8cm breast tumor disappeared after one chemo treatment along with six weeks of taking Paw Paw Cell Reg (a standardized extract - $40), drinking down all of the fruit and vegetable smoothies I make every day prior to her light (reduced protein) meals, and she has stopped eating nearly all processed foods including white flour and sugar. She has been a great patient.

Oncologists are limited to giving FDA approved treatments to their patients. There are LOTS of "valid" alternative treatments which have worked for thousands of people - some of whom were rejected by oncologists, who said they were terminal and had no hope or treatment available.
Read Charlene's story. Her moniker on this site is cmbrne -Charlene's Bio follows:
=====================================
I was diagnosed with Stage IV Adenocarcinoma BAC, in May 05. I was told by two cancer centers, including the James Cancer Center at Ohio State University, that I was inoperable and untreatable. I had two small lesions on my lower left lung and one on my left adrenal gland. I was given a prognosis of less than a year and my daughter was advised to call in hospice. I had no symptoms and felt healthy. I understood the seriousness of a dx of lung cancer, but I didn't believe they were correct in their prognosis. I knew without question that I wasn't in need of hospice. Instead of being afraid I was going to die, I was relieved and grateful that they wouldn't be giving me chemo. I was forced to find my own treatment and had no choice but to turn to alternative therapy. I started with the APJohn Cancer amino acid and diet program, which is an excellent program but expensive. Then I was referred to a progressive cancer center in Rochester, NY for Novalis treatments. I sent them my films and was accepted for Novalis treatment and was successfully treated in Oct. 05 Following Novalis treatments I was in remission for over a year. About a year later, Oct 06 the CTscan showed a few tiny spots had developed in both lungs. BAC often presents as multifocal. At that time my oncologist started me on Tarceva, but it was ineffective. In 2008 I had a suspected met on the L4 lumbar vertebra and went back to NY for successful TomoTherapy. It may not have been a met, but only a biopsy would determine what it was and since I was in alot of pain, I had TomoTherapy and eliminated the lesion. I've only used alternative therapy since I was dx'd. I am presently using LDN, PawPaw, IP6, MCP and several other supplements. I still seem to be in good health, maintain healthy weight, look healthy, and have a lot of energy. I am still free of symptoms. On May 7 it will be five years since my dx. I have outlived the prognosis by 4 years without chemo. Hopefully I will continue to do well and won't need hospice for a few more years.
====================================
Charlene is obviosly still with us and VERY sharp.

I recently gave a bottle of Paw Paw Cell Reg to a friend at church - I really think/believe it will help him.
You can read more about it here:

http://www.pawpawresearch.com/

And you can order it from here:

http://www.healthy-sunshine.com/paw-paw-cell-reg.asp

I actually first learned about it from this website which describes 12 different alternative treatments and is the #1 alternative cancer site on google:
http://alternativecancer.us/

Please do not give up. Others have recovered using alternatives and so can you.

Charlene is super friendly and will write back to you if you send her a message.

God bless,
Bob

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Bob,

I agree with you in part about alternative treatments -- I'm doing standard and non-standard things myself. However, I think you really need to understand that Stage II breast cancer, the lung cancer you mention, and Stage IV metastatic triple-negative breast cancer are entirely different beasts -- just google to find out.

I also agree that one should never give up hope, but I also have triple negative breast cancer. I asked my alternative therapists (a naturopath and a Chinese herbalist) if they felt that with my kind of cancer it was a viable option to go the "completely natural" route. The answer in both cases was exactly the same -- "No, because it doesn't work fast enough."

So, while I agree that it's a good idea to check out alternatives, it's really not helpful in this case. Furthermore, plugging a product is questionable at best -- not all that far removed from all those pharmaceutical companies plugging their products on television in my opinion.

I commend you for doing all you're doing for your wife. You should know that as a person who has (or has had) Stage II breast cancer, some statistics show that she has a 40% to 70% chance of it returning some day as Stage IV metastatic breast cancer.

I agree that you shouldn't take it lightly and should make all changes you can to prevent it from coming back. You should also know that many of us here (including me) made the same or similar changes and had our cancer return. Still, many of us are maintaining and able to talk about it, so maybe those changes helped to a degree.

Anyway, those are my thoughts.

Jill

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I came across Pemetrexed recently and since it isn't often mentioned, compiled some bits on it:
http://her2support.org/vbulletin/showthread.php?p=225713#post225713

Triple negative BC may have extra benefit from a diabetes drug called Metformin:
http://her2support.org/vbulletin/showthread.php?t=39740

There may be combinations of chemos worth trying:http://her2support.org/vbulletin/showthread.php?t=41966

A very unique possibility is GM-CSF:
http://her2support.org/vbulletin/showthread.php?p=214220#post214220

Instead of guessing, a chemosensitivity test could inform choices:http://her2support.org/vbulletin/showthread.php?p=222355#post222355

This could reveal that previously used chemos able to work again.

And more frequent, lower dosages of chemo (Metronomic) can work with drugs that failed in full dose:
http://her2support.org/vbulletin/showthread.php?t=24729&highlight=antimitot ic

Treatments for pleural effusions:
http://her2support.org/vbulletin/showthread.php?p=221798#post221798

As mentioned, many integrative and alternative options.

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What about ixempra and xeloda together? I have a friend who is TN and progressed while on ACT. she started this combo 2 mos ago and her liver mets are "gone" and her lymph nodes are either gone or 1/2 their original size. Just an idea....Christi

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Thanks for responding JillAline.

I guess the main point I wanted to convey was some patients are told by oncologists, "There is no treatment for you and you are terminal." Some of these folks curl up and prepare for death while others try to find another way to survive "without" the assistance of oncologists and their "limited" arsenal of patented, expensive, chemo drugs, which do kill "some" (not all) cancer cells, but at the same time, damage our healthy cells and our immune system, leaving us more susceptible to future diseases, including additional cancer.

What does it prove if some folks are able to beat cancer using non-patented (and way less expensive) treatments after they are told by oncologists there is no hope for them???

To me, it says we may be better off not using chemo..., Period.

When folks go to oncologists, it is the beginning of a lifelong journey of receiving expensive drugs. Most accept this as "the only way to survive cancer."

I am sorry if I seem a "LITTLE" skeptical of the AMA (I guess it is very obvious).
Please read about the history of the AMA, how they underhandedly "took over" the healthcare industry, and you may have some doubts too.

http://www.wellsphere.com/chronic-pain-article/how-the-ama-maligned-homeopa thic-and-osteopathic-medecine/147517

Many brave MD's, risking their good standing with the AMA, have stated that chemo is not the best way to deal with cancer. Below are some quotes from those who dislike chemo:
====================================
The great lack of trust is evident even amongst doctors. Polls and questionnaires show that three doctors out of four (75 per cent) would refuse any chemotherapy because of its ineffectiveness against the disease and its devastating effects on the entire human organism. This is what many doctors and scientists have to say about chemotherapy:
“The majority of the cancer patients in this country die because of chemotherapy, which does not cure breast, colon or lung cancer. This has been documented for over a decade and nevertheless doctors still utilize chemotherapy to fight these tumors.” (Allen Levin, MD, UCSF, “The Healing of Cancer”, Marcus Books, 1990).
“If I were to contract cancer, I would never turn to a certain standard for the therapy of this disease. Cancer patients who stay away from these centers have some chance to make it.” (Prof. Gorge Mathe, “Scientific Medicine Stymied”, Medicines Nouvelles, Paris, 1989)
“Dr. Hardin Jones, lecturer at the University of California, after having analyzed for many decades statistics on cancer survival, has come to this conclusion: ‘… when not treated, the patients do not get worse or they even get better’. The unsettling conclusions of Dr. Jones have never been refuted”. (Walter Last, “The Ecologist”, Vol. 28, no. 2, March-April 1998)
“Many oncologists recommend chemotherapy for almost any type of cancer, with a faith that is unshaken by the almost constant failures”.(Albert Braverman, MD, “Medical Oncology in the 90s”, Lancet, 1991, Vol. 337, p. 901)
“Our most efficacious regimens are loaded with risks, side effects and practical problems; and after all the patients we have treated have paid the toll, only a miniscule percentage of them is paid off with an ephemeral period of tumoral regression and generally a partial one” (Edward G. Griffin “World Without Cancer”, American Media Publications, 1996)
“After all, and for the overwhelming majority of the cases, there is no proof whatsoever that chemotherapy prolongs survival expectations. And this is the great lie about this therapy, that there is a correlation between the reduction of cancer and the extension of the life of the patient”. (Philip Day, “Cancer: Why we’re still dying to know the truth”, Credence Publications, 2000)
“Several full-time scientists at the McGill Cancer Center sent to 118 doctors, all experts on lung cancer, a questionnaire to determine the level of trust they had in the therapies they were applying; they were asked to imagine that they themselves had contracted the disease and which of the six current experimental therapies they would choose. 79 doctors answered, 64 of them said that they would not consent to undergo any treatment containing cis-platinum – one of the common chemotherapy drugs they used – while 58 out of 79 believed that all the experimental therapies above were not accepted because of the ineffectiveness and the elevated level of toxicity of chemotherapy.” (Philip Day, “Cancer: Why we’re still dying to know the truth”, Credence Publications, 2000)
====================================

I guess it could be assumed, I will never use chemo and I will encourage folks to seek help from alternatives. My wife has to make her own choice, but it does not mean I have to agree and... I will nudge her toward integrating her chemo with alternative treatments.
Sorry if I offended anyone - I just want to help everyone know that oncologists have very limited options and many folks fare better "without" chemo.
Also, the financial snowball of chemo (and other drugs too) is soooo huge, pharmaceutical companies will fight any opposition it comes up against to maintain their profits. I truly believe the greed of drug companies and their associates is helping to bankrupt our country.

I'll stop, for now...

Don't give up, even if your oncologist does...
educate yourselves!!!

http://alternativecancer.us/

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