List of all of the Side Effects I deal with that wreak my QOL
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peaches, here's an abstract for a study on a familial polyp disorder associated with increased risk of Colon Cancer that is considerably decreased by supplementing with Quercetin and Curcumin. Curcumin and Quercetin are extremely safe and also help with inflammation ( decrease CRP) and cancer risk. There are several studies showing it is beneficial. I will include links to those studies.
That really sucks how the colonoscopy completely missed the cancers of your Dad. Operator error. Frightening for all of us who trusted the colonoscopy we had to have been accurate.
https://www.cghjournal.org/article/S1542-3565(06)00278-3/fulltext
https://clinicaltrials.gov/ct2/show/NCT03061591 ( this is a link for a trial in Israel on Tumeric and colon cancer)
https://www.ncbi.nlm.nih.gov/pubmed/12171541
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6205744/
https://cancerci.biomedcentral.com/articles/10.1186/s12935-015-0241-x
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European Journal of Cancer
Volume 41, Issue 13, September 2005, Pages 1955-1968
Curcumin: The story so far
Author links open overlay panelR.A.SharmaA.J.GescherW.P.StewardShow more
https://doi.org/10.1016/j.ejca.2005.05.009Get rights and content
Abstract
Curcumin is a polyphenol derived from the herbal remedy and dietary spice turmeric. It possesses diverse anti-inflammatory and anti-cancer properties following oral or topical administration. Apart from curcumin's potent antioxidant capacity at neutral and acidic pH, its mechanisms of action include inhibition of several cell signalling pathways at multiple levels, effects on cellular enzymes such as cyclooxygenase and glutathione S-transferases, immuno-modulation and effects on angiogenesis and cell–cell adhesion. Curcumin's ability to affect gene transcription and to induce apoptosis in preclinical models is likely to be of particular relevance to cancer chemoprevention and chemotherapy in patients. Although curcumin's low systemic bioavailability following oral dosing may limit access of sufficient concentrations for pharmacological effect in certain tissues, the attainment of biologically active levels in the gastrointestinal tract has been demonstrated in animals and humans. Sufficient data currently exist to advocate phase II clinical evaluation of oral curcumin in patients with invasive malignancy or pre-invasive lesions of the gastrointestinal tract, particularly the colon and rectum.
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Combination Treatment With Curcumin and Quercetin of Adenomas in Familial Adenomatous Polyposis
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Francis M. Giardiello‡,¶,#,
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Correspondence information about the author Francis M. Giardiello
Email the author Francis M. GiardielloDOI: https://doi.org/10.1016/j.cgh.2006.03.020
Article Outline
Background & Aims: Familialadenomatous polyposis (FAP) is an autosomal-dominant disorder characterized by the development of hundreds of colorectal adenomas and eventual colorectal cancer. Regression of adenomas in this syndrome occurs with the administration of nonsteroidal anti-inflammatory drugs and cyclooxygenase-2 inhibitors, but these compounds can have considerable side effects. We evaluated the efficacy of the combination of diet-derived nonprescription supplements curcumin and quercetin to regress adenomas in patients with FAP. Methods: Five FAP patients with prior colectomy (4 with retained rectum and 1 with an ileal anal pouch) received curcumin 480 mg and quercetin 20 mg orally 3 times a day. The number and size of polyps were assessed at baseline and after therapy. The Wilcoxon signed-rank test was used to determine differences in the number and size of polyps. Treatment side effects and medication compliance also were evaluated. Results: All 5 patients had a decreased polyp number and size from baseline after a mean of 6 months of treatment with curcumin and quercetin. The mean percent decrease in the number and size of polyps from baseline was 60.4% (P < .05) and 50.9% (P < .05), respectively. Minimal adverse side effects and no laboratory abnormalities were noted. Conclusions: The combination of curcumin and quercetin appears to reduce the number and size of ileal and rectal adenomas in patients with FAP without appreciable toxicity. Randomized controlled trials are needed to validate these findings.
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I'm on curcumin as well! And quercetin.
Other very good results have been shown with EGCG (green tea active ingredient).
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Smart, very smart santabarbarian. I just become angry that research proven , safe strategies like High Dose IV Vitamin C are not paid for by my useless insurance, which only paid for the traditional slash/poison and burn approach to care that has had only questionable sucess for decades. And even then, my husbands insurance had a very high out of pocket deductible, so I was impoverished by the cancer industry. All my savings gone.
That is just wrong. Ironically, this article comes from Fred Hutch, who is part of scca that DEPLETED MY LIFE SAVINGS.
What, are they just suddenly noticing they impoverish most of their patients? DUH!!! At least they didn't sanitize it and used words like FINANCIAL RUIN!
Years too late to help me. Can I have my Life Savings back,...... Please? Pretty Please???
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Cancer sends many patients into bankruptcy. Advisors are stepping up to stop that
PUBLISHED SUN, NOV 24 201911:00 AM ESTUPDATED MON, NOV 25 20191:50 PM EST
KEY POINTS
- For many, getting a cancer diagnosis is financially devastating. Research shows that cancer patients are more likely to declare bankruptcy than the average person.
- The causes of financial ruin for cancer patients are many, including the high cost of treatments, filling in insurance coverage gaps and covering the loss of income.
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I heard they are beginning to cover high dose IV C.
I am very sorry for the ruin of your finances but also glad you are still here!
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I'm really interested in iv vitamin c
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I've been offline for a few days so I missed a lot of posts here. I don't necessarily want to stir the pot again but I want to add a few thoughts.
Bessie is an analytical person, as am I. Those of us with logical personalities may come across as cold and detached to those who focus mainly on emotions, but we are no less sincere. We do have emotions, but we don't tie our behaviors to our emotions when we can instead use facts and logic. I have never cried over my breast cancer, nor am I afraid of it returning or resentful of the changes it made to my body. This is normal, just as an emotional response is normal.
I am defensive about the sweeping negative generalizations made about some professions on this thread. I have a wonderful MO and will speak up for him. He likes me and continues to see me, even though I have "refused his drugs". It angers me to see him spoken of in the way he has on this thread. I also have a daughter who's currently in pharmacy school and is now preparing to switch to medical school. My mother is an RN, and my grandfather was a doctor. They are all good people with feelings and empathy and are not part of some horrible "industry" that thinks nothing of the people it treats.
I have training in counseling psychology and received a lot of help from therapists myself when I was married to an abusive mentally ill man. There are many great therapists out there as well.
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many great therapists. I currently have one.
Many great doctors, I've mentioned that
i got bc in my thirties and I've already had a recurrence.
some people are also more analytical due to the type of cancer or pre cancer they've had and age at diagnosis and general prognosis.
I've encountered some shockingly bad drs. I've had some terrible experiences. It is an industry and there are some terrible people involved in it. In my opinion, they outnumber the good.
good for you if you've experienced otherwise. I have the right to voice my feelings and talk about my experiences. I’ve never said I’m resentful of what happened to my body but a lot of anger about bc can be due to that. That’s normal
I don't know your dr btw. Do you understand the fear involved in having had grade 3 cancer? Easy to talk about fear when you had a low grade it would seem to me. How about a recurrence? How about the anger involved in getting bc in your thirties? No? I'm not interested in your judgement of anything I've talked about. It didn't happen to you
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lying awake. Haven’t slept all night. Have to go to see a lymphedema physio specialist ... later today. she works in the centre I go to annually for mammograms. I’ve had biopsies, etc.. the place triggers my ptsd. Just because I’m going there I can’t sleep.
I’d say ptsd is high on my list of what wrecks qol
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"Many great doctors, I've mentioned that"
I haven't seen you say that, maybe I missed it. Here are a few of your comments I have seen, these are the generalizations that made me defend my MO and my relatives:
"I know that MO's don't like me, or anyone, who refuses their drugs"
"They only treat you well if you agree with them and consent to their medications without question."
"arrogant drs that are lying to their patients and treating people badly are the norm in MO not the exception - They might be nice to you at the beginning but become very nasty if you don't give consent"
"These people are immoral. They have no problem with lies."
"My advice - NEVER see a MO alone...They know they can't be rude to you when tere (sic) is a witness"
I can't believe that you are actually trying to play a "one up" game about who had the worst time of it when it comes to our breast cancer. That's a new one for me, I must say!
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this is no game lady. What's astounding to me is that you're saying things like “I'm not scared of a recurrence" when you've stated you had the least aggressive form of cancer which is actually seriously offensive to those of us who've had a recurrence, like it's not the devastating trauma that it is - then saying don't compare!
It's not about one up, it's about passing judgement then saying let's not talk about what we've actually experienced. As for “who had a worse time of it" - that's what this thread is about. If you're going to make judgey comments about how we feel, perhaps think about the reasons; they've been talked about at length. To put it into context you also need to match my quotes up - my feelings together with what's caused them
As for mo's, my experiences are different to yours. It angers you?! What I've experienced has angered me! You've never cried? You're one big inspiration.
What have your relatives got to do with it? Defend your dentist as I was referring to him as well
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"this is no game lady" - Do you think I think posting here is a game? Of course, with my inconsequential diagnosis I surely must be here just to play games.
I find it interesting that you talk about passing judgement when you are clearly judging me - very harshly.
I was defending the medical professionals in my life that I care about, and that includes my MO and family members.
You clearly need help you will never get by blasting anger on this board. If you wish to remain filled with anger and spewing hate towards anyone who disagrees with you that's your choice. I, personally, have said what I wished to say.
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You accused me of playing a game didn't you?
Again, I don't know your relatives and I've never met your MO. Not sure how they're relevant to my feelings? Lots of anger is about what happened to my father, as I mentioned. I like to defend my relatives too. I'm not sure how that's for you to judge because your experiences were good ones?
I need help? Agree. Breast cancer for young women is horrendously difficult. I'll never find help on this board? This board has been a huge support to me for the past eleven years. It's my safe place for expressing all of the volcanic fury and frustration that is the bc experience I've lived as well as for the sadness and despair. I've almost said all I wanted to say - one last thing, I hate medical oncologists
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I am a newbie. Several days in and joined to be a part of a group that understands what I’ve been going through. I am starting chemotherapy a week from today and I am terrified. I wanted to see what other survivors side effects have been. I’ve been on the fence about chemo, because it is poison in your body, killing healthy and unhealthy cells. In reading these threads, I’m more confused now then ever. In reading other threads, people have stated staying away from certain vitamins, like vitamin c during chemo. But, now I see a link, that I haven’t read yet about an IV for vitamin c while having chemo. My mother had colon cancer in her 30’s, she had a colostomy, had lung cancer in her 50’s, smoker. They removed 1/3 of her lung. In both cases, never received any kind of treatment. She just celebrated her 80th birthday. Her sister and her daughter both breast cancer survivors. One is a 25 year survivor and the other is 11. I don’t carry the gene, but apparently that is irrelevant because you read where women still get multiple cancers I saw Kathy Bates being interviewed and she doesn’t have the gene, but had ovarian cancer first and years later breast cancer. My recurrence number is 32 and I’ve been advised to have chemo. I had stage 1 in the left breast and calcifications on the right breast, stage 0. I had savi radiation on each breast. 2x a day for 5 days. I thought I was finished with until I got the news on the Oncotype score. I just want to make the right decision. so many conflicting stories. It makes for a hard decision and I know everyone’s cancer is different. It’s like playing roulette with your life. Damned if you do, damned if you don’t.
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Tromano -- you can find a multiplicity of answers on almost every question here... While some MOs embrace complimentary use of supplements and a changed diet during chemo, many/most do not. It is a grey area due to the lack of any double blind trials. MOs range from wonderful to shitty; their experience with complimentary practices ranges widely. You might need to shop around.
What has helped me is to find a MO I felt was intelligent and willing to discuss options. I did get a consult from a very pro supplement MO. My home MO was willing to look up everything suggested and he okayed it all though I think I was likely to be the patient of his who went furthest in this direction.
Some of the supplements were intended to protect me from the chemo, and others to fight the cancer, and others to goose my immune system.
I have NO long term effects of treatment (over one year post final chemo) except some numbness in my arm pit from surgery to remove a few lymph nodes. No neuropathy, no fibrosis, my hair came back, my energy is great.... nothing lasting.
It is complicated -- as every kind of BC is somewhat different, and responds differently, it helps to have a knowledgeable MO to guide the use of supplements and other complimentary practices. The ones who are knowledgeable are a minority.
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I didn’t have chemo but my sister did. She had a good response and NO long term effects. She continued to work, had no nausea or vomiting but did have hair loss.That was in 2000 and she continues to be a healthy person. As stated before, everyone has a different response to treatment and treatments have come a long way. Good luck with your plan going forward.
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Thank you both for your comments. Very hard decision. When I go see MO today I will let her know I am undecided. Right now I'm in PT because of the cording on my left arm. I had no lymph nodes removed, because they were negative, but had PASH removed. That incision was close to the armpit and that's what caused the cording. I’m glad the mass, which was small, was removed. I did the savi radiation, but that also can cause cancer. I will continue to research. The other recommendation was tamoxifen after chemo. Read those side effects too, also haunting.
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tromano, There are certain things you can do to lower risk that will have zero SEs. Like maintaining a BMI in the target range, regular exercise of 3-6 hours per week, eating a whole foods/veggie-heavy diet and stick to nutritious food choices (rather than 'empty' calories). None of this will hurt you at all. And it will help you be stronger if something crops up. Many of the SEs like lymphedema are much worse if you are obese, for example. As you sort through medical options don't forget these easy ways to improve your health.
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So true santabarbara!! I bumped up my exercise to at least 30min/day of rebounding and eating well. I feel really good and the SE’s are all positive! Our bodies respond so well to being taken care of.
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If you haven't already, would you mind sharing your thoughts on Medical Cannabis?
We are looking for people to take our Survey.
Only for those living in the US, and who have been diagnosed less than 5 years ago. Will take 10-15 minutes to complete.
Thank you, thank you!!
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Tromano. I'd stay away from chemotherapy. I had it eleven years ago. Have you been informed it causes changes to your brain? Chemotherapy Induced Cognitive Impairment - I have it. It means I have problems with memory, and recalling information under pressure. I noticed this started during Chemotherapy and continues to this day; it's just not as bad now as during chemotherapy.
I also have a slight blood disorder which I believe is due to chemotherapy drugs, aa evidence links chemo to it (I'm not comfortable talking about it here).
It did not kill all cancer cells in my body. It was like being slowly poisoned by weed killer. Gruelling experience.
Here's some links re studies if the brain changes:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3869865/
Note the following at the conclusion of the above study - this is exactly what I've already touched on during this thread. Why would a drug company or dr cover up or conceal negative information? You need to make informed decisions. They try to ensure you don't.
“However, it should also be noted that investigators may not seek to publish negative findings, leading to a bias in the literature toward studies demonstrating significant between-group differences."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280365/f
From the above:Conclusions
Our study demonstrated alterations in structural brain networks and associated neuropsychological deficits among breast cancer survivors.
And this :Heart damage. Chemotherapy carries a small risk of weakening the heart muscle and causing other heart problems. Leukemia. Rarely, chemotherapy for breast cancer can trigger a secondary cancer, such as cancer of the blood cells (leukemia), several years after the chemotherapywas completed.
My feelings are that chemotherapy, being a cytotoxic very dangerous cocktail of drugs carries risks and long term health problems that should be avoided. It really is very hard, it was a gruelling experience and I do have long term side effects.
A book I'd recommend also is What Your Doctor May Not tell you About Breast Cancer, by Dr John Lee. I think it's a very important read.
The truth is out there.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917255/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696751/
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yogatyme - do you do a rebounding program, or workout - like a DVD, or do you do random moves? I enjoy rebounding too but I haven't done anything other than random movements
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tromano, put Oncotype RSPC in search for some good information on chemo.
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I've gone through hormonal and now chemo...I used to be athletic, played semi-professional soccer as a teen....no more, now I can barely stand for 10 minutes without needing to lie down....
By Rehema EllisCorrespondentNBC News
NEW YORK — It is a unique situation in medicine: Unlike other kinds of doctors, cancer doctors are allowed to profit from the sale of chemotherapy drugs.
"The significant amount of our revenue comes from the profit, if you will, that we make from selling the drugs," says Dr. Peter Eisenberg, a private physician who specializes in cancer treatment.
Doctors in other specialties simply write prescriptions. But oncologists make most of their income by buying drugs wholesale and selling them to patients at a marked up prices.
"So the pressure is frankly on to make money by selling medications," says Eisenberg.
Ethicists see a potential for conflict of interest.
"They might have a preference to give you the one that they're going to make the most money from," says Arthur Caplan with the University of Pennsylvania Center of Bioethics. Caplan also writes MSNBC.com's Breaking Bioethics column.
This unique payment system started years ago because Medicare and insurers wanted to save money by moving cancer treatments out of the hospital. But it has come under increasing scrutiny as prices for some cancer drugs skyrocketed to tens of thousands of dollars a year.
That's a lesson patient Cynthia Adams quickly learned.
"I almost had a heart attack when we got the first insurance statement," says Adams. "It was pretty outrageous."
Dr. Eisenberg, like many of his colleagues, does not like the system.
"Patients should feel that their physician has their best interest at heart, always," he says. "And the way the system is set up, because of the incentives, does something to destroy that."
Three years ago the government tried to fix the system by cutting back on the amount doctors got for the drugs and trying to find ways to pay the doctors more for other services, like spending time with the patients. But many experts say the underlying problems remain — with the potential for patients to get expensive drugs for the wrong reasons.
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My ability to think clearly and solve problems is severely impaired...I can't handle any stress. I'm burned out....and that feeling never goes away, no matter how many hours I sleep or what I eat...
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Top Sloan Kettering Cancer Doctor Resigns After Failing to Disclose Industry Ties
For years he had been falsifying the results of clinical trials...selling quackery for lots of money while patients died of breast cancer. He’s working for Roche now.
- Sept. 13, 2018
This article was reported and written in a collaboration with ProPublica, the nonprofit investigative journalism organization.
Dr. José Baselga, the chief medical officer of Memorial Sloan Kettering Cancer Center, resigned on Thursday amid reports that he had failed to disclose millions of dollars in payments from health care companies in dozens of research articles.
The revelations about Dr. Baselga's disclosure lapses, reported by The New York Times and ProPublica last weekend, have rocked Memorial Sloan Kettering, one of the nation's leading cancer centers, in recent days. Its top executives scrambled to contain the fallout, including urgent meetings of physician leaders and the executive committee of its board of directors.
In his resignation letter released Thursday, Dr. Baselga, who also served as the physician-in-chief, said he feared that the matter would be a distraction from his role overseeing clinical care and that he had been "extremely proud" to work at Memorial Sloan Kettering.
It is my hope that this situation will inspire a doubling down on transparency in our field," he said, adding that he hoped the medical community would work together to develop a more standardized system for reporting industry ties.
In an email sent to the staff Thursday evening, Dr. Craig B. Thompson, the hospital's chief executive, said that Dr. Baselga had made "numerous" contributions to Memorial Sloan Kettering, patients and cancer treatment. Dr. Lisa DeAngelis, the chairwoman of the neurology department, will take over as acting physician-in-chief until Dr. Baselga's successor is hired.
The resignation was effective immediately, and he will have no continuing role at the cancer center, although he will stay for two weeks to ease the transition, said Christine Hickey, a spokeswoman for the cancer center.
Dr. Thompson echoed comments he made to the hospital staff on Sunday, saying that the cancer center had "robust programs" in place to manage employees' relationships to outside companies, but that "we will remain diligent." He added, "There will be continued discussion and review of these matters in the coming weeks."
Dr. Baselga, a prominent figure in the world of cancer research, omitted his financial ties to companies like the Swiss drugmaker Roche and several small biotech start-ups in prestigious medical publications like The New England Journal of Medicine and The Lancet. He also failed to disclose any company affiliations in articles he published in the journal Cancer Discovery, for which he serves as one of two editors in chief.
All told, ProPublica and The Times found that Dr. Baselga had failed to report any industry ties in 60 percent of the nearly 180 papers he had published since 2013. That figure increased each year — he did not disclose any relationships in 87 percent of the journal articles that he co-wrote last year.
In an interview and later statement, Dr. Baselga said he planned to correct his conflict-of-interest disclosures in 17 journal articles, including in The New England Journal and The Lancet. But he contended that in dozens of other cases, no disclosure was required because the topics of the articles had little financial implication. He also said his failed disclosures were unintentional and should not reflect on the value of the research he conducted.
Dr. Baselga and Memorial Sloan Kettering said that he had disclosed his industry relationships to the cancer center.
Those journals, as well as professional societies like the American Society of Clinical Oncology and the American Association for Cancer Research, said they were conducting reviews of Dr. Baselga's disclosure practices after inquiries from The Times and ProPublica. Dr. Baselga was president of the A.A.C.R. in 2015 and 2016 and appears to have violated disclosure rules for reporting conflicts of interest during that period.
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Santabarbaraian, I was lucky enough to see one of your posts about alternative care in one of the chemo threads when I was just ready to start chemo. My MO said to eat whatever I wanted, no supplements and rest. I have no way to know for sure if good nutrition, exercise and a few other things I did helped, but at least it was something I could control and that helped keep my anxiety in check somewhat.
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Part of it is having something to do to help yourself. I agree. It was part of the benefit for me too.
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tromano, I have to say I wish I had not gotten the chemo. I have several long term consequences that I was not warned about. I had heard of Chemo Brain, but none of the onco people actually said anything about it to me, or that some kinds of brain damage could be permanent. I have mostly recovered, but still have verbal aphasia, where I can not find the word I am trying to say. I will be speaking fluently, and then suddenly stop because I can't find the word I want. People don't know why I suddenly pause, and it's embarrassing to say the least.
I am also having night blindness that no one told me about in my R eye. Also my hearing is going, and I never went to concerts/listened to loud music or took too many NSAIDs. That kind of hearing loss is linked to chemo's poison effects on those delicate hair cells that transmit sound. And again, no one mentioned any of that possibility of this occuring to me.
I am not going to tell you what to do. You decide that. But at least ask the best questions so you know what might happen. I think people coming through chemo without some permant side effects is fairly rare. Just decide for yourself if some potential side effect is more than you can tolerate. Ask specific questions.
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https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-survivor/art-20045524
What are late effects of cancer treatment?
Late effects are side effects of cancer treatment that become apparent after your treatment has ended. Cancer survivors might experience late effects of cancer treatment years later.
What cancer treatments cause late effects?
Late effects of cancer treatment can come from any of the main types of cancer treatment: chemotherapy, hormone therapy, radiation, surgery, targeted therapy and immunotherapy. As newer types of cancer treatment are developed, such as immunotherapy, doctors may find that these treatments also cause late effects in cancer survivors.
Treatment Late effects Chemotherapy - Dental problems
- Early menopause
- Hearing loss
- Heart problems
- Increased risk of other cancers
- Infertility
- Loss of taste
- Lung disease
- Nerve damage
- Osteoporosis
- Reduced lung capacity
Radiation therapy - Cavities and tooth decay
- Early menopause
- Heart and vascular problems
- Hypothyroidism
- Increased risk of other cancers
- Increased risk of stroke
- Infertility
- Intestinal problems
- Lung disease
- Lymphedema
- Memory problems
- Osteoporosis
Surgery - Lymphedema
Hormone therapy - Blood clots
- Hot flashes (in men as well as in women)
- Increased risk of other cancers
- Menopausal symptoms
- Osteoporosis
- Sexual side effects (men and women)
Immunotherapy Late effects unknown at this time Targeted therapy Late effects unknown at this time 0 -
Hi Frisky. I like the articles you posted because they show what does happen sometimes. It's important we speak up about wrongdoing anywhere or when we encounter it.
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Under surgery there should be never ending pain and tightness, and nerve damage. Chance of infection.
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