Quick response needed desperately!!!!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by MsE, Feb 2, 2011.

  1. MsE

    MsE New Member

    I agree. Updating wills periodically is important, and it is something I do.
  2. MsE

    MsE New Member

    Okay. I'll see if I can find a copy. I hope it gives a positive approach and a holistic approach as well as the usual medical info. Triple negative breast cancer is an odd ball for someone my age.
    Usually strikes much younger women. So far, however, I've found lots of good information on the subject. Some of it hopeful, some not so. I'm just fortunate we have such a wonderful cancer clinic fifteen miles away from my home. State-of-the-art stuff and all tied in with the biggest clinics in Seattle.
  3. MsE

    MsE New Member

    The word from the chemo oncologist is that I am NOT a good candidate for chemo. The word from the radiation oncologist is that she would recommend a mastectomy. She thought radiation would raise havoc because of the CFS.

    I just had a lumpectomy a couple of weeks ago. I'm still terribly bruised and one wound still not healed. Nothing will be done for at least a month.

    So, last night I talked with my surgeon about a mastectomy. She offered: "If you were my mother I would not want you to have radiation." The surgeon also said I had a 70 to 75% chance the cancer would not return to my breast. She also said she wouldn't be in a big hurry to have a mastectomy. Said I could wait and tackle that IF the cancer returned.

    But if there are sneaky little hiding cells, as the oncologist says, and if TTN cancer is as aggressive as they say it is, how do I know some of the little critters aren't clumping into a tumor as I type this note? Aaaarrrgh.

    So, why am I writing? Because I'm upset. Because I can't think straight. Because I don't know what to do. Because my boob is sore. AND, because if I don't have a mastectomy in March, I won't have anyone available to care for me while I heal. AND, because I won't be able to talk with my surgeon again until Feb. 22nd. AND because another daughter, who is involved in the medical field, says, "Don't go by what the surgeon says. Go by what the oncologists say." Okay. The radiation oncologist recommended a mastectomy as her first choice for me. The chemo oncologist, after he said I wasn't a viable candidate for chemo for several reasons, started to discuss a mastectomy as an option, and then started talking about a mastectomy's "psychological effects on a woman's sense of femininity" (or something like that) when I said I hated the idea of more surgery which have nothing to do with whether or not I have two breasts. At 76--big deal! So he sent me to the radiation oncologist, but that was before I knew all the side effects of radiation therapy.

    The chemo oncologist also said there could very well be other cancer cells in my breast lurking around that didn't show up in the sentinel node, the other node they took, or the tissue around the tumor. He said at the present time I am cancer free--unless cells are lurking elsewhere. Triple negative cancer is very aggressive. He guessed there were cells lurking in there, undetected and undetectable at the present time. But

    So now I am probably going to have to have a mastectomy after I heal from the lumpectomy. I suspect this message is confusing. It's the best I can do right now. I guess I just need some emotional support.
  4. ruby711

    ruby711 New Member

    You might try contacting Dr. Nicholas Gonzalez in New York- I believe he is in Manhattan. You can probably find him on the net. He has treated many cancer patients and uses many natural approaches. There are other cancer docs that u can contact by getting in touch with the people that work for Dr. Gary Null who is a nutritionist. Dr. Null along with other physicians have successfully treated many people with different kinds of cancers at all different stages of the cancer. I believe Dr. Gonzalez has a before chemo protocol to reduce side effects of chemo.
    I wish you all the best.
    Ruby
  5. Mikie

    Mikie Moderator

    I'm sorry I can't help with medical info but I can pray for your healing.

    Love, Mikie
  6. MsE

    MsE New Member

    I am fortunate that the type of cancer I have is not one that is transmitted through genes--no genetic component for triple negative. Just a sort of bleak picture for me. Ah well. Yes, I'll probably have a mastectomy after the lumpectomy heals. If I knew then what I know now, I would have had them take it off in the first place, but I guess this scenario isn't all that unusual. Until the lumpectomy they were not absolutely positive what was going on.
  7. cammie314

    cammie314 Member

    My mom has CFS/ME and is currently going through treatment for stage four colon cancer. The chemotherapy is called 5 FU and includes avastin and oyxaliplatin.

    She is having extreme pain from neuropathy. The pain "floats" around her body from one region to another. It can feel like stabbing, or burning or a broken rib.

    The oncologists have never dealt with this before so they said it is not caused by chemo and that maybe she fell, or has a kidney stone, UTI, etc. The treatment tends to involve looking for the pain source in typical ways(blood tests, xrays for broken bones).

    Oxycodone is prescribed for the pain but it doesn't work well.

    Does anyone have any new comments on how chemotherapy effects patients with CFS/FM? Does anyone have ideas about drugs or therapies that work? She is on Cymbalta and that did help but chemo has intensified all of her CFS problems.

    I have not found almost any information online about CFS and cancer treatment beyond this forum.
  8. IanH

    IanH Active Member

    cammie314.
    For some people going through chemotherapy heightened pain does occur. It probably is only partly due to the drugs.
    We have found that the best adjunctive pain treatment is Amitryptiline. Normally this drug is to be avoided for ME/CFS but under these circumstance it does work quite well in reducing such pain. When we have ME or FM patients undergoing surgery which will involve post surgical pain, amitryptiline is the drug of choice. It can also be given in combination with oxycodone and will increase the pain-killing effect of oxycodone. Oxycodone alone is not very effective for heightened pain in ME/CFS or FM.

    Another drug which we sometimes use is gabapentin (neurontin) but I have not had as good feedback from patients taking the gabapentin for pain in these chemotherapy/post-surgical circumstances.

    Do the oncologists know that your Mom has ME/CFS?
    Perhaps you could talk to your doctor about this option.
  9. cammie314

    cammie314 Member

    Thank you IanH! The doctors and nurses all know about her CFS/ME but they have very little experience with it so they treat pain complaints in the ways that normally work for them with other patients.

    A nurse did suggest Gabapentin for us, and a pharmacist said they thought oxycodone would work better. Maybe trying it is the best option-we plan to discuss these options with the doctor tomorrow.