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Cancer treatment. Chemotherapy and surgery.

Messages
7
Location
Scotland
Help! I have severe ME and POTS. I’ve just been diagnosed with a rare form of cancer (sarcoma) and the treatment is aggressive in patient chemotherapy. I will also need surgery. I have been housebound for 9yrs and am wheelchair bound. So far the doc has come out to me but I have my first clinic visit this week. That alone will cause a big crash. I don’t know how I’m going to cope with chemo, surgery and anaesthetics. I’m v sensitive to meds. Methotrexate (a mild cancer drug) for my rheumatoid arthritis has caused a relapse from which I haven’t recovered.

Please can anyone tell me their experiences of chemo, surgery and anaesthesia?? I’m obviously very worried that this will pretty much destroy me.

Thank you.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
So sorry to hear. To decide for taking chemo and surgery, the first question I would ask is: how many have improved 5-year mortality with these means, compared to no treatment. If it's just 2 or 3 in a 100, I would consider it too risky for me, compared to how few benefit. But this a decision only oneself can make, after gathering more dependable information.
 

brenda

Senior Member
Messages
2,266
Location
UK
I would also add that this is not your only option as there are many people reversing cancer using a raw vegan plant based diet with a back up of the many substances proven to kill cancer cells such as frankincense and using many other modalities which Pharma would like to see banned.
 
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pamojja

Senior Member
Messages
2,384
Location
Austria
I made the experience with cancer-patients to give alternative suggestions without being asked for doesn't work. Since such started to come already without being asked for, I want to point out that alternatives never have a 100% cure rate. Simply because none of the alternative providers would have ever the funds to complete RCTs for being able to proof. Please don't give false hope. What is true, however, is that there are hundreds classified as 'spontaneous remissions in the literature. One researcher astonished why so many cured have been classified as 'spontaneous' without even asking the patient, set out to interview such successful patients. Of course, what she found was anything than spontaneous, but extraordinary efforts on side of the patients:



During the course of the study, Kelly identified more than seventy-five factors that cancer survivors said they used as a part of their healing journey. Nine of these factors were used by almost every one of them. They are as follows:

1. Radically change the diet
Let your food be your medicine, and medicine your food (Hippocrates)
- avoid sugar, meat, dairy products and processed foods
- eat lots of fruits and vegetables
- limit to organic food
- drink only filtered water

2. Take control of health
Action is the basic key to success (Pablo Picasso)
- actively participate
- be prepared for change
- resolve resistance

3. Follow your own intuition
In vital matters, the decision should come from the unconscious, somewhere from within (Sigmund Freud)
- listen to body signals
- activate the intuition
- find the right change

4. Take herbs and food supplements
The art of healing comes from nature and not from the physician (Paracelsus)
- help digestion: digestive enzymes, prebiotics and probiotics
- boost the immune system: e.g. Vitamin C, other vitamins (B12, D3, K2), fish oil, trace elements, certain edible fungi, aloe vera; and hormones (melatonin)
- detoxify the body:
- antimycotics (eg olive leaf extract, celery, nettle)
- antiparasitic substances (eg wormwood, yellow root, black nut husks)
- antibacterial and antiviral (eg garlic, oregano oil, Pau d'Arco)
- liver detoxification (eg milk spotted dwarf, dandelion root, sweet tooth root)
- supplements alone is not enough

5. Release oppressed emotions
Anger is an acid which can cause much greater damage to the vessel in which it is stored than to what it pours (Mark Twain)
- disease is blockade
- what are suppressed emotions?
- stress and cancer
- anxiety and cancer
- the waterfall solution

6. Enhance positive emotions
The meaning of life is to be happy (Dalai Lama)
- what are positive emotions?
- what are the positive emotions in the body?
- happiness must be practiced daily
- but one does not have to be permanently happy

7. Allow social support
In poverty and misery, friends are the only refuge (Aristotle)
- experience love
- do not feel alone
- physical contact

8. Deepen the spiritual connection
This is the greatest mistake in the treatment of diseases: that there are doctors for the body and physicians for the soul, where both can not be separated (Plato)
- experience spirituality
- a third kind of love
- the relationship between the physical and the spiritual
- it is important to exercise regularly
- it is important to calm the mind

9. Have strong reasons for life
People say that it is the meaning of life that we all seek. I do not believe that this is what we are really looking for. I believe what we are looking for is an experience of being alive ... (Joseph Campbell)
- placing deep trust in one's inner being
- the mind directs the body
- find one's calling

http://www.radicalremission.com/

Therefore these 9 factor which seem to have been present in successful 'spontaneous remissions' encompasses a bid more than just 1 or 2 supplements, and a particular diet. In fact some successful patients even changed from a vegan to a omnivore diet to facilitate their individual remission. Most patient wouldn't even know what 'intuition' or self-directed healthcare means. Or simple don't can come up with a good reason to continue living anymore. And would fail, sadly.

Also the late MD Nicolas Gonzales somewhat successful with late-stage pancreatic cancer, followed a counter advise concerning diet. Here the notes I jotted down from an interview:

Dominant sympathetic types: Typ ‘A’ personalities, disciplined; mostly solid cancers; do good on much plant based foods: fruits, vegies, seeds, grains, nuts, plant based oils: hemp, flax; Vitamin B1, B2, B3, 8:1 ratio magnesium to calcium, High vitamin C & D; but not on much meat protein, No b12, no choline, no pantheonic acid, no zinc, no selenium, no fish oil. Yes to beta Carotene, chromium, folic acid, riboflavin, thiamin,& niacin

Parasympathetic types are rather creative with unconventional ‘formal’ education; mostly blood-based cancers; do good on lots of meat and a ketogenic diet, saturated fats, fats from fish oils, Calcium 10-15 ratio to magnesium (High magnesium causes depression), Vitamin B12, B5, Choline; not as good on grains or seed. Need zinc & selenium, not good with other large Vitamin B doses.

Mixed or balanced types: suffer rather from allergies and fatigue.

Of course, these are just rough guidelines, and any mix of the 2 main types is possible too. This is a hugely complex topic. If I was in that shoes and would be rich, I immediately would contact a number of alternative clinics with good reputations. Since I'm poor, I would inform myself thoroughly about all available modalities (for example for a start at this extensive web site), and trust my intuition.

If it is someone else, I would at least wait till he asked for alternatives.
 
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Carl

Senior Member
Messages
362
Location
United Kingdom
http://www.tbyil.com/Cancer_Alternatives.htm
The creator of the above site knows quite a lot about cancer and has written a book on the subject as well as doing a lot of research on many different forms of treatment and their benefits/pitfalls.

He posts on curezone under the username Dquixote1217 and also moderated the curezone cancer forum. It might be worth asking him for advice and post to the cancer forum.

There are many natural products which can be helpful with whatever decision you make and direction you decide to go.

https://www.curezone.org/forums/f.asp?f=254

https://www.curezone.org/forums/s.asp?f=762&c=0&ob=d&m=Dquixote1217
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Help! I have severe ME and POTS. I’ve just been diagnosed with a rare form of cancer (sarcoma) and the treatment is aggressive in patient chemotherapy. I will also need surgery. I have been housebound for 9yrs and am wheelchair bound. So far the doc has come out to me but I have my first clinic visit this week. That alone will cause a big crash. I don’t know how I’m going to cope with chemo, surgery and anaesthetics. I’m v sensitive to meds. Methotrexate (a mild cancer drug) for my rheumatoid arthritis has caused a relapse from which I haven’t recovered.

Please can anyone tell me their experiences of chemo, surgery and anaesthesia?? I’m obviously very worried that this will pretty much destroy me.

Thank you.
You are wise to be concerned.

My fight with stage 3 uterine cancer was successful but it triggered my ME/CFS which I have been fighting ever since. I had surgery, chemotherapy, and used many alternative treatments including high dose vitamin C, melatonin, curcumin, mushrooms, and a low carbohydrate organic omnivore diet.

Every cancer is different, so taking some random internet advice for a cancer cure is not wise. You'll need to figure out what is best in your situation.

If I were in your shoes, in addition to Radical Remission, I would read these books:

Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer https://www.amazon.com/dp/0470584920/ref=cm_sw_r_cp_apa_Bu-wAbNRTT63S

Tripping over the Truth The Metabolic Theory of Cancer https://www.amazon.com/dp/1500600318/ref=cm_sw_r_cp_apa_lE-wAbXK556Q0

Anticancer: A New Way of Life https://www.amazon.com/dp/0670021644/ref=cm_sw_r_em_apa_Os-wAbMN4Q3QS

Nutrition & the Autonomic Nervous System
https://www.amazon.com/Nutrition-Au...swatch_0?_encoding=UTF8&qid=1488637767&sr=1-1

As for surgery, if your cancer can be cut out without damaging you too badly, I would do it. Ask questions about lymph nodes and preventing lymphedema, which can reduce quality of life.

If you have mast cell activation and allergies, screen all medications in advance and ensure the is a plan to manage your care and keep you safe. The hospital pharmacist came to me the day before my release and said "We've tried 22 painkillers and you are allergic to all of them. We need to find a solution before you are released from the hospital." The answer turned out to be injectable Dilaudid, but my husband had to drive many miles to be able to get the medication as it was uncommonly used.

With chemotherapy, it's best to understand what you're getting into. What are the medications being prescribed, what are the alternatives, what are the side effects, and how can the side effect be prevented? Are there any natural substances like glutathione or n-acetyl cysteine or vitamin C or glutamine that can reduce bad side effects? What is the success rate, or how will it increase your odds of success? What is your long-term prognosis?

Is radiation an option? I am not a big fan of radiation and I refused radiation in my situation, but I do believe that if you have a contained problem that radiation can surgically attack, that it may be a viable choice.

The best you can do is to nurture your body with a nutrient dense diet and look for anything natural that can increase your odds of success.

One thing you might look into is dichloroacetate, or DCA. I have seen it successfully used in cancer patients at the naturopathic clinics I've been in. It has some positive research for ME/CFS, so perhaps its a way to kill 2 birds with one stone. I don't know, but it might be worth seeing if it would help.

Conventional cancer treatments are highly damaging. Dying of cancer is not good, so their goal is to prevent it. It is not to preserve quality of life. If you want to do that, education yourself and wisely picking and choosing both natural and conventional treatments gives you the best chance of success.

Best wishes...:hug:
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@Learner1 - thank you for your post ! :thumbsup: My granddaughter has cervical cancer which has metastasized. Chemo almost killed her. I've passed on a lot of info (including about DCA) to her and her mom and am going to pass along your info as well. I've read a lot about Dr. Gonzalez and pancreatic enzyme therapy. It isn't just for pancreatic cancer though it uses pancreatic enzymes. And I watched a DVD lecture by him explaining the theory behind it - it was fascinating.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I believe Gonzalez' partner, Linda Isaacs, is still practicing. However, having a history of chemo may be a disqualifier.

I would be careful about diet without getting their personalized recommendations, as in my case, if you see the general info, one would guess vegan. I was on a low carb, higher fat whole food organic Paleo diet throughout my treatment and need a lot of amino acids.

Gonzalez had about 10 different diets from vegan to omnivore, with a wide variation depending on factors unique to each patient.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Note: Several posts in this thread have been edited or removed as, for very good reasons, we have a rule against giving medical advice:
Rule 5: No medical advice

Members may offer their opinion or make suggestions but they may not tell members what they must or should do.

One of the main purposes of the Phoenix Rising forums is to serve as a place where patients can receive support from other patients who struggle with similar problems and where we can all learn about each others experiences. Many members offer information related to symptoms, medication, supplements and treatments, and such information is warmly welcomed. Members are encouraged to post about their personal experiences, post information regarding their own medical choices, and post opinions about how particular treatments and protocols have worked for them.
Bottom line: feel free to share your experiences, quotes or links from literature, but not to tell another member how to handle their very individual medical situation.
 

Gingergrrl

Senior Member
Messages
16,171
I'm very sorry to hear that you're going through this @Fluffytrousers. I am not able to advice about such a serious health issue as I'm don't have medical knowledge. I just wanted to wish that you'll get recover quickly without additional ME issues. I also wish that you get good care from NHS, my prayers are with you.

I echo what Erin said and don't know your case to be able to give direct feedback but my prayers and good wishes are with you as you navigate this journey. Do you have support from family or friends who can drive you or serve as an advocate?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi @Fluffytrousers,

I've had experience of chemo. rads and surgery for cancer on the NHS. Worst part for me was the chemo which I have never recovered from.

Glad to hear that so far the doctor has come to you. As that has been the case does it mean you have an Oncologist who understands the limitations of a PWME in a hospital setting?

Best thing would probably for me to send you a personal message and we can talk that way.