The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Help with Brother's results gratefully received

Discussion in 'General Treatment' started by sianrecovery, Apr 5, 2013.

  1. sianrecovery

    sianrecovery Senior Member

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    I'm editing this post because it was pointed out to me that I'd put my brother's results with name up, so have taken them down. Also, several text books and talks to doctors later on, I feel like I've got a better understanding of them. Any general tips on the topic greatly appreciated.

    This is a post about cancer, rather than ME, so if it needs not to be on the forum, I understand. Maybe I'm just too used to turning to PR! But my brother does have CFS, and I assume some of us will go on to experience cancer as a result of auto-immunity and immune dysregulation. I guess these topics may cross more.

    He's had four years of CFS and severe rhinitis, and on-going flu like illness, and asthma. He's been on steroids and inhalers. He was recently found to have bilateral breast cancer, with lymph node involvement on both sides. They are now suggesting chemo and radiotherapy. He's fifty five. He's trying to decide if its worth doing the chemo. They describe the cancer as a stage three cancer.
    Thanks in advance for any replies, and moderators, if you need to do your thing, no hard feelings xxxx
     
  2. Sea

    Sea Senior Member

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    Sianrecovery I have no knowledge to offer but I am so sorry to hear of your brother's cancer. If it were me I think I would accept chemotherapy hoping it may actually benefit the CFS as well as the cancer.
     
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  3. Dreambirdie

    Dreambirdie work in progress

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  4. xks201

    xks201 Senior Member

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    I would think to check his testosterone to estrogen ratio. Estradiol should be under 25. Testosterone Total should be above 700 or at 700. Sex hormone binding globulin should be below 20. Replacement of testosterone is indicated if his testosterone is low (I consider under 450 low with 800 being ideal). Something like tamoxifen may be of use to your brother. Does he have breast tissue development too? Is he overweight?
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    U thinking has something to do with gyno as well?? Arimidex maybe more effective then tamoxifen but then also a bigger chance of driving estrogen too low as well. Its all worth looking into?
     
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  6. sianrecovery

    sianrecovery Senior Member

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    He's not overweight, he's never been on estrogenic meds, and as far as we know, had no serious exposure to radiation. None of his doctors have mentioned hormones or hormone therapies to him yet, which surprises me. I will investigate. Our mother also died in her early sixties of breast cancer, so I guess the likelihood is there is a genetic component.
     
  7. Plum

    Plum Senior Member

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    Hi Sian

    Sorry to hear of what your brother and you are going through with all of this. I don't have much to suggest but a couple of things did spring to mind.

    Look into Gerson Therapy - there are a couple of fairly cheap books on the topic and their institute is very helpful.
    http://gerson.org/gerpress/

    Look into Dr. Gonzalez and Dr. Kelly - there is a free book online about this. It is more along the lines of metabolic typing whereas Gerson is vegan. Dr. Gonzalez practices still. http://www.drkelley.com/CANLIVER55.html

    Oestrogen appears to be an issue. Is that correct? I am by no means knowledgeable on this as an issue in men but know a fair bit about it in women. You need to look into Xenoestrogens and massively reduce these - drinking water, plastics etc. Your brother needs to get his hormones checked with a functional lab like Genova but also get bloods with GP/Consultant done too. It's seems that there is an imbalance going on. In women, oestrogen dominance leads us to an increased susceptibility of breast cancer. This can be a difficult issue to get on top of. It is possible as someone else mentioned that he has a testosterone/oestrogen imbalance which may be easier to sort out in men than in women. Any excess fat is going to possibly exacerbate this.

    Ketogenic diets have also been proven positive for cancer although I have seen them most successful in brain tumours.

    And then there is http://www.burzynskiclinic.com/

    As you might've guessed I am a fan of alternative treatments for cancer. I feel that people should know as much as possible about ALL possible treatments before picking what's right for them. A lot of the stuff I have suggested can be looked into over the course of about 1 week so it's not too time consuming. Good luck.
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sorry to hear about your Bro. he did have cfs so more then likely had poor nk function. nk cells are suppose to fight viruses and cancers, also viruses like ebv etc can be a possible cause of some cancers??
     
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  9. Kati

    Kati Patient in training

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    Hi, I was a chemo nurse up until I got sick in 2008. Breast cancer is one of the best treatable cancers we know. Even in men. The drugs are effective. While the regimen can be tiring, and sometimes side effects can be difficult at most (there are good drugs for the said side effects, the benefits of the chemo are definitely worthwhile.

    I'd say it's definitely worth a shot, listen to dr and treatment recommendations.
     
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  10. sianrecovery

    sianrecovery Senior Member

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    Thanks guys, that's great feedback. It means a lot not to be alone with this.

    One generalised point for anyone reading this - the way having ME can mean the docs and even ourselves don't react swiftly to health threats. My mother died of breast cancer, after years of what they called then post-viral fatigue, and the same kidney condition as me. The level of care she got was very poor. My brother first had a begin lump removed in 2006. When he went to the GP three years ago, he was told not to worry about the lump, they didn't signify much in men. In truth, after that, he was just too tired to really push. He has a different coping style to me, and just resigned himself to a life on steroids and with severe fatigue and flu-like symptoms.

    I think our doctors can become desensitised to the very risks facing us, and I think we can too.
     
  11. baccarat

    baccarat Senior Member

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    One of my best friends had an advanced form a couple of years ago and was treated by radiotherapy and surgical removal of both breasts. She's now clear and quite healthy.
    Your brother may want to get a second opinion on treatments potentially available. There are now advanced software and radiotherapy machines that are extremely precise in targeting tumour masses and can deliver a higher amount of radiation without damaging healthy cells and are very effective, although they may no be available in every hospital.
    Personally, I'd also look into testing for Nagalase. If high, it can suggest nk cells and macrophages are not dealing with abnormal cells as well as viruses and bacteria.
     
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  12. Kati

    Kati Patient in training

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    My mum hadbreast cancer. That was 20 years ago. She refused to go for mastectomy, and refused chemo, and went on for natural treatments. You name it, she tried it. And it didn't work. she died.

    Evidence-based medicine of 2013 can tell exactly what treatment regimen works best for what stage cancer, whether it's estrogen or Her-2 positive, etc. Go with the science. Don't wait.
     
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  13. sianrecovery

    sianrecovery Senior Member

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    Thanks Baccarat - had never looked into nagalase before, good tip.
     
  14. sianrecovery

    sianrecovery Senior Member

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    My mum did both - mainstream and everything else. She died. Sometimes, I guess, its just got your number on it. Thanks for your post though - really appreciate it. Your mum sounds like mine - a real trier. I'm sure she would be proud of the fact that despite ME, you are still seeking a solution.
     
  15. Kati

    Kati Patient in training

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    With my mom's experience, I am not willing to go the natural route. I have been overdosed on it and burnt if you will.The field of cancer is where we can see science at its best. Treatments and biologics (targeted drugs like Herceptin) are the best evidence-based medicine we got.

    Edit to add: And of course, people will live and people will die, with the best treatments we got. We have tumors that can respond well to chemo and others who will not respond well to chemo. In the end, each and every one of us die of something. For some it will be cancer. For others, old age. It would be sad that someone dies because they didn't get the appropriate treatment. My mom was one of them.
     
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  16. Tristen

    Tristen Senior Member

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    Sian, I'm not qualified to adequately interpret those reports for you, but what I can say is that with that extent of nodal involvement, I would expect the docs to have made the chemo/radiation as a standard part of his Tx. The report sounds as though he has nodal involvement likely to be beyond what can resolved with surgery alone. I don't want to cause alarm, but do want to stress the absolute necessity for adequate diagnostics and Tx with something so serious.

    Yea, stage 3 indicates lymph/nodal involvement, but ya need to know how much. Also, there is the possibility of microscopic cancer in the lymph nodes/system that cannot be detected by most conventional diagnostic tests such as contrast MRI, and PET scans (the chemo would hit this). And obviously, they aren't going to biopsy every lymph node. If he hasn't already, I would suggest he discuss this with the docs. I would want to sit down for a Q&A with the docs with a diagram of the lymph system involved and have them show where they could see the masses, how much cancer they think may be undetectable, and their prognosis now vs adding the chemo/radiation. I would also ask about whether they had achieved "clear margin" around the mass removal sites. Chemo and possibly radiation will Tx residual cancer from those areas as well as any that had escaped farther into the lymph system and body. I would also want more report on the pathology. Fast growing cancer? More likely to respond to tx, etc, asking prognosis with each response.

    I cannot emphasize the importance of a second opinion, and do it ASAP. Second opinions should be standard when it comes to cancer. Get one with the best oncologist possible who is not connected to the other docs. His docs should have made this a firm recommendation. Get the second opinion with an oncologist who will do all his/her own tests and retesting, rather than only interpreting the diagnostics already done. It's not unheard of for a mass to show up on one scan and not the other. Radiologists can make mistakes too. I know of second opinions finding masses on the same scans overlooked by the original radiologist.

    I have no doubt it was his immune dysfunction allowing the cancer to take off. Possibly a virus like HPV started the fire, and the me/cfs with the NK dysfunction, trashed all the extinguishers.
     
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  17. sianrecovery

    sianrecovery Senior Member

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    Thanks Tristen, that's a great response, and very helpful. I will try and get him to look at those areas. He's being treated in our health service - which is in one way great, because he is getting treatment, in another, very restrictive, in that they regard a request for a second opinion or further testing as akin to an offer to barbecue their baby. I have no info as yet on whether or not his tumours show positive for biomarkers, and that's a concern - it seems to be pretty basic info.

    Yes, all of the things you mentioned come into play I think - and a heavy lifelong consumption of alcohol - but even with the booze, I don't think you expect to see advanced bilateral breast cancer in a 55 year old man.

    Thanks again, hope you are having a good and peaceful day xxxx
     

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