Do you suffer from both ME and cancer

Discussion in 'Fibromyalgia Main Forum' started by helsbels, Oct 20, 2005.

  1. helsbels

    helsbels New Member

    Hi,

    My mum has suffered from ME for the last 8 years and has recently found out that she has breast cancer - which has come as a devastaing blow. We are particularly concerned about how she will be able to cope with the chemo if she has to have it.

    I think that it would really help her if you was able to talk to someone who is going through/been through something similar. If you, or if you know of anyone who has been in this situation and would be willing to talk to my Mum please please can you get in touch.

    Its a long shot but worth an ask!
  2. KelB

    KelB New Member

    Sorry I can't help, but will bump this post to the top of the list for more folks to see.

    All the best to you and your Mum.
  3. Rosiebud

    Rosiebud New Member

    I'm really sorry about your Mum.

    If you type 'breast cancer' in the search up on the left, press 'go' and you will come up with the old posts on this. I checked and there are quite a few, I didnt recognise too many of the people so they may have left the board but you might get some info there. ME is known as CFS on this board.

    I dont know if you are in USA or UK??

    There are M.E. groups in UK that might help but I dont know about USA or Canada.

    Hope someone else can help.

    love
    Rosie
    [This Message was Edited on 10/20/2005]
    [This Message was Edited on 10/21/2005]
  4. hopeful4

    hopeful4 New Member

    I'm so sorry that your Mother has been diagnosed with breast cancer. Please know that many more people survive now than ever before!

    I was diagnosed in 2000 with CFIDS (CFS or ME) and this year with FM also. In 2003, at the age of 53, I was diagnosed with breast cancer. I can tell you that it was overwhelming at the time, but that with the support of my family, a few friends, and my amazing team of doctors and health providers, I got through it. I know that your Mom will get through it as well!

    I understand your concerns regarding chemo, as this is often very difficult on a "normal" person, let alone one with CFIDS. Please encourage your Mom to discuss her concerns with her oncologist and care team so that they can address her special health care needs.

    My cancer was stage 1, ER+PR+, high grade, clean lymph nodes. I was treated with a lumpectomy, radiation therapy, and tamoxifen. Prior to treatment I had genetic testing due to high risk for breast and ovarian cancer and other factors. My genes were fine, but if they hadn't been I would have opted for a different treatment plan.

    In addition, a naturopathic doctor specializing in cancer treatment was on my care team. She had me on a special diet, vitamin and mineral supplements, herbs, mushrooms, etc. I also went for regular acupuncture treatments, physical therapy, Reiki, healing touch, and massage therapy.

    At home I did special exercises, self-Reiki, practiced qigong and yoga, visualizations/relaxation, and prayer!

    I only mention all of this to show you and Mom that there are CHOICES available to her, there are COMPLIMENTARY THERAPIES that can help her greatly, and there are things that SHE CAN DO for herself throughout this journey.

    Thank G-d she has you for support, because your love and care and kind heart are part of the healing.

    I would like to share some resources with you and Mom that helped me greatly:

    1. "Dr. Susan Love's Breast Book": This is the "bible" on breast care. Although it can be found used, make sure you have the most current edition for the most up to date info. Dr. Love also has a website.

    2. "How to Prevent and Treat Cancer with Natural Medicine" by Dr. Michael Murray. This book is endorsed by the Cancer Treatment Centers of America and works together with conventional medicine.

    It has specific information on breast cancer. It is very specific with diet, supplements, natural medicines, mind-body connection, alternative and complementary approaches. It also has an entire chapter called "Using Natural Medicine to Cope with the Side Effects of Chemotherapy, Radiation and Surgery."

    I found this book extremely helpful. It was closely aligned with what my naturopathic doctor recommended for me.

    3. www.breastcancer.org is a website devoted to education and patient support. It also has a message board with supportive great women talking about everything that concerns them regarding breast cancer, treatment, physical and emotional issues, and moving through the journey.

    Your Mom is NOT ALONE. Please encourage her to contact a local breast cancer support group or social worker for further connections and assistance.

    Also, a side-note on CFIDS and breast cancer. This year I began treatment at the FFC (Fibromyalgia and Fatigue Center). As part of the lab work they tested my NK cells (natural killer cells). The test showed that they were abnormally low. This is not a test that my oncologist ever does on my regular check-ups! I was very surprised! Now, the FFC is helping to boost my immune system and boost my NK cells with herbal supplements. I'm sure that the low NK count played a role in me getting breast cancer.

    Well my dears, best wishes to you both, and especially to Mom. Sending prayers that all goes very well throughout this time for Mom, and for her health and healing.

    Hugs,
    Hopeful4



  5. hopeful4

    hopeful4 New Member

    bump for helsbels
  6. june-bug

    june-bug New Member

    I dont have ME but I have fibromyalgia. I also have dealt with cancer but not of the breast, I have a rare, rare, rare head and neck cancer called acinic cell carcinoma. It was found on my right saliva gland (parotid gland) and my gland was removed. My lymph nodes were not affected so I was advised to do radiation to which I declined. There is no treatment besides surgery and radiation for this rare cancer, so close watching through cat scans, MRI and check ups are a must because it is likely to metastasize to brain (central nervous system) or lungs. Anyway, your mom is fortunate in that there is so much hope for her. Breast cancer is highly researched and cures are being investigated every day. Not so with myself theres no rush to cure a cancer that only affects 250 people a year. I wonder if cancer cells can take us over more easily because our immune system is busy fghting M.E/FMS??
    My thoughts are with you and your mother, keep positive.
    June Bug
  7. hopeful4

    hopeful4 New Member

    Hi June-bug,
    I'm so very sorry to learn of your experiences with such a rare form of cancer. Although there is really no research I know of to link CFS w/cancer, it certainly seems likely that there is one.

    For example, as I mentioned above, my NK cells which were tested this year were extremely low. CFS is an immune deficiency disorder. We can take certain supplments and do certain practices that will boost the NK cells, for the CFS and for the cancer.

    I'm a big advocate of advocating for myself, i.e., doing whatever I can to improve my health and quality of life. In that vein, I highly recommend that you check out the book I mentioned above: "How to Prevent and Treat Cancer with Natural Medicine" by Dr. Michael Murray. It uses an approach that complements western medicine. It is full of very specific information on diet, supplements, and alternative/complementary therapies like acupuncture, and/or qigong, yoga, meditation, visualization. Many of these are things that we can do for ourselves...no one can do them for us.

    Please consider getting this book at your library to see if it makes sense to you. Also, an ND with knowledge about treating/preventing cancer would be great as well.

    Wishing you good health and a happy day,
    Hopeful4
  8. june-bug

    june-bug New Member

    For the info on the book. I agree with you on being your own advocate.Life is different after cancer and you start thinking about EVERYTHING that enters your body, the same with fibro and cfs. I have plans on going to the FFC to treat my fibro and am hoping the treatments for fibro dont make me prone to the cancer returning. Ive been cancer free now for 7 years and am thankful for every day even though I struggle with pain and fatigue. June Bug
  9. hopeful4

    hopeful4 New Member

    Hi June-bug,
    Congratulations on being a 7-year survivor of such a rare cancer...you give me much hope! I know just what you mean about YES being so thankful for each day, and at the same time struggling through the CFIDS/FM. And because of surviving cancer, wanting so much to just break out and REALLY LIVE!!

    It sounds like we're on the same beam! I changed my diet when I got CFIDS, and fine-tuned it much more when I got the cancer diagnosis. My ND taught me to be very aware also of what the quality of the supplements that we use are.

    As far as the FFC treatments and cancer, they have been extremely aware of my breast cancer treatment and medication (tamoxifen). When prescribing various supplements and hormones, they are very careful to not give me anything which would promote estrogen or progesterone (since my cancer was ER+/PR+). Also, they have noted that some of the immune boosters and other supplements have anti-cancer qualities.

    In addition, I run any new prescriptions by my oncologist and my ND. So far, so good.

    Wishing you the very best, have a great day,
    Hopeful4