Tumor Resistant to Treatment

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My sister was diagnosed with Stage IIIA NSCLC in December. She has had a full tour of radiation treatment and twelve sessions of combined Chemotherapy Cisplatin and another drug. At the end of her treatment her Pet Scan showed two new tumor growths in her other lung. They presumed that it demonstrated that she was receiving the wrong treatment, went in, got a sample and sent it out to a lab in California that tested the cells and reported back that a combination of Netelbeen and Tamoxifin showed promise and should produce good results. She began this second treatment and two days after her second treatment a tumor appeared on her throat. Pathology biopsied the tumor and found it was the same type as they found in her lungs. The lab in California found all other chemotherapy options to not be as adequate as the one they recommended so in some way there doesn't seem to be any other way to turn. the Oncologist recommended that the tumor not be removed but rather used as a means to visibly be able to determine if the the new treatment was working and she went forward with her third treatment of 7. We are depressed and sad. Are there any directions or possibilities that we are overlooking? Is anyone else experiencing this type of resistance?

5 replies

Hi Valerie,
I would like to share my husband's treatment plan to give you hope that your sister can be a survivor even though the chemo doesn't seem to work like it should. May 1st of 2006, my husband was diagnosed with NSCLC and the onc thought possibly stage I or II. A surgeon went in to remove the lung and found that the tumor had spread to his pleura and was unable to remove the tumor. Suddenly our stage I or II became stage IV. With our hopes shot down about a cure by surgical removal, we began the road to chemo.

Larry began with Carboplaten / Taxol. The tumor shrank a little - but not enough to really make much difference. He then was placed on Taxotere / Avastin. His condition became worse due to a lung cavity that occurred. Then, we went through several rounds of Alimta. Now over a year later, he is finishing up Avastin / Gemzar. I am amzed at how tough and strong he has been through all of these treatments.

To our amazement, so far none of the treatments have worked in shrinking the tumors. They have continued to grow - slowly. But the important thing to him has been that he has had an oncologist, that if a treatment didn't work, he went on to another and kept trying to find one that would work.

There are so many treatments out there. I hope that your oncologist will keep trying. You can always get a second opinion. I am glad that no matter how this ends, I feel certain that our oncologist gave it his best in trying to find something that would work. I'm really beginning to believe that this is a disease that can be managed and that there are drugs out there to help extend the lives of those we love.

I'll say a little prayer for your you and your sister.

Rosemary

Dear Valorie

I am sorry to hear your sister is having so many problems.

I am going to recommend that you have the oncologist check total serum copper and serum ceruloplasmin levels. If these are high, then your only choice may be anti-copper therapy. However, I will warn you most oncologists will not help you do this. Many never heard of it.

Normal ceruloplasmin levels should be around 24-36 mg/dl.

If your sister does not have high copper then you don't have to worry about this.

It does not happen often, but high levels of copper in tumor cells make them resistant to chemotherapy and even radiation. There have been several medical publications to this effect. High levels of ceruloplasmin will greatly increase angiogenesis and make it possible for tumors to appear anywhere. I don't have time to post the links to the medical publications. But you need to know what the risks are doing this. The anti copper therapy requires using a copper chelator. The 2 drugs of choice are Trientine Hydrochloride and Ammonium Tetrathiomolybdate. The risks of doing this is iron metabolism will become broken (unregulated). When iron is unregulated 3 things can happen, (1) nothing you luck out your body is able to handle it; (2) you become anemic and RBC counts fall (then the oncologist takes you off chemo); (3) iron overload. The first 2 are the most common. Most cancer patients already are low in hemogloblin and can not do this type of therapy. Iron overload is unlikely to happen, especially on a woman and a cancer patient. Treatment for iron overload is pblebotomy.

Fundamental to this discussion is the following:

Iron stores -->

Fe2+ --> Fe3+ --> Transferrin --> Bone Marrow --> Erythocytes

|

Cp + O2

Where:
Cp = Ceruloplasmin
Fe2+ = Ferrous Iron
Fe3+ = Ferric Iron

Ceruloplasmin in the presence with oxygen acts as a catalyst to move iron from the ferrous to the ferric state. So it control how fast this reaction takes place. Oxygen therapy works by increasing ferrioxdase activity of ceruloplasmin so your body needs less. Oxygen therapy quits working when the cancer cells learn how to make their own ceruloplasmin. Smoking does the reverse. It decreases ferrioxidase activity such that the body must make more ceruloplasmin. In order to make ceruloplasmin the body must absorb more copper.

I probably overwhelmed you with too much information. There are only like 2 or 3 doctors that do this across the country. You also can not get these drugs in Mexico. They are orphan drugs.

--Ray

Hi Valerie

It can be very frustrating trying to find the right treatment plan. I hope the doctors will soon find an effective combination for your sister.

Is your sister being treated at a Comprehensive Cancer Center? Has she had a second opinion?

I am impressed that tumor samples were sent to a lab to see what chemo would be effective. Does anyone (Chum, maybe) know how accurate these tests are? I've not heard of Tamoxifin being used for lung cancer (which means nothing, I'm no expert) but I thought it was used for breast cancer.

Maybe Tarceva is an option for your sister. I don't know if you are familiar with this drug but it's not chemotherapy. It is an EGFR inhibitor. You take one pill every day at home. Quite a few people here are on Tarceva, including my own Mother. I would definitely discuss this possibility with her Oncologist. I would also ask the doctor if Alimta or Avastin are possibilities. I think they are classed as chemo drugs but work in a different way.

You should also email Dr. West at www.onctalk.com. He is a top oncologist specializing in lung cancer. If you email him he may have a suggestion for you. He is a fabulous resource and has helped many of us with our questions. If you email him on his website he will get back to you quickly and there is no charge for his service.

To sum up, my suggestions are: Comprehensive Cancer Center, 2nd opinion, ask about Tarceva, Avastin & Alimta, and contact Dr. West.

Sometimes it takes awhile Valerie but don't lose hope. The right combination will be found; sometimes it just takes longer than we like.

My best wishes to you and your sister.

Lee

Well, my third cancer in my remaining right lung has resisted 2 chemos and 33 intense, focused radiation treatments. It went from 1 cm to 7 cm in 6 months. In my case, it was a single tumor confined to my lung, so I was still able to treat it locally. I finished cyberknife treatment on it at the beginning of June and hope to at least have it be stable at my next scan.

Your sister has to have systemic treatment. Some people have had good results with an Avastin/Tarceva combo. I was thinking about trying that or just taxotere if the ck does not work.

I think you should ask Dr. Wast about the reliability of testing tumors for the best chemo to use. I seem to remember that the tests are not very reliable.

http://www.onctalk.com/

Don M

Hi -
My mom sent a sample of the tumor to Rational Therapeutics. Is this the lab you all used.

Results came back saying Navelbine and Cisplatin (together) had the best chance. Also said that mitomycin-C would be possible (but our onc said it was too dangerous a drug), and esentially nothing else looked good. Our onc said he didn't trust those tests too much or everyone would be doing them - but on the other hand we had nothing else to go on so we may as well try. WELL, the cis/navelbine doublet had horrible side effects for my mom and allowed the tumors to grow after three cycles. We stopped it, hemmed and hawed for about 6 weeks and (she was so sick the first 3 weeks of that 6 weeks from the cis/navelbine that she couldn't have tolerated any treatment even if we had known which way to turn) finally decided through much discussion with doc at Rush Medical Center in Chicago (it was his idea) and our onc at MDA in houston to do a combo of Avastin/Tarceva.

Now I will say that the lab in CA didn't test Avastin and they did test erlotonib and said it was not active. AND my mom had spent a month of on again off again (because of horrible skinreaction) tarceva therapy about six months earlier - this allowed growth also. THe feeling from the Doc in Chgo was that she hadn't given Tarceva (FYI- she does NOT have the mutation) enough of a chance to work and that some study showed that Tarceva and Avastin worked much better together than either alone. Really, we were kind of at a loss of what to do, but decided to go for it.

Long story short, the tumors might have shrunk A LITTLE, but certainly not much BUT at last look (last week) they are STABLE. As the chicago onc says "we'll take it." He also said that the people he's seen last the longest are women whose tumors don't actually shrink but rather stay the same for long periods of time.

I wish your sister the best in finding something that will work for her.

Katie

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