The Ongoing Cancer Thread

[CalgaryFan1988]

For those of you who are unaware, I recently lost my wife to an ongoing battle with Metastatic Melanoma with an unknown primary, she was 33.

I wanted to start a thread where people could get things off their chest by sharing stories, or maybe share what we've learned from our experiences to help others. If anything that's posted even helps out 1 person, I feel it's worth it.

Understandably, I did my fair share of reading the last couple years and feel that I should pass on the limited knowledge I have, because what's the point of reading/learning if we don't share.

- one of the first things I read, was that how good something as simple as peppermint is for working on the nausea associated with chemo. Anything peppermint worked great for my wife. Peppermint tea, gum (pur gum) and peppermint lifesavers she found the best.

- I also read a lot about acidic levels in your body and that, supposedly, leads to the disease. I found the book "alkalize or die" to be very insightful. A lot of good ideas in the book with recipes with low acidic levels. Secondly, "Cerra water", like a Brita filter is reccomended as a good source of antioxidant, also high in alkaline. You can also buy PH level strips to test the acid in your body to see if you are at risk, again the book "alkaline or die" teaches you a lot about how important it is to raise the alkaline level in your body.

- a lot of people swear by medicinal methods. Cannabis oil has been linked to being very successful in beating the disease. Calgary is very fortunate in that there is a doctor that you can see to get approved fairly quickly. Of course there is a fee associated with it. If anyone wants the name of the doctor, again feel free to PM me and I can give you the number and cost associated with it.

- supposedly if you are diagnosed with the disease, you should immediately cut as much protein out of your food intake as possible. If you have the disease in your body, "bad" protein from food helps the disease to grow (multiplying cells). I was told that all protein should be taken in powder and that "Nature Pro" was one of the best.

- if there is something that is available to the US and not yet available in Canada, Great Falls, Montana has a very nice facility (even put us up for a couple nights). I have a number if someone would happen to need it.

- more directed for Melanoma patients (and they couldn't help us) but "Save your Skin" foundation out of BC were very insightful into giving us direction and trying to help out as best as they could. They have a fb page with updates on medication and again I have phone numbers if anyone should happen to want them.

I have been contemplating whether or not to start this thread for a while, hopefully it helps some people out as more and more lives unfortunately become affected by the disease.

Everything I posted is ideas from books, doctors, nutritionists and health stores that I visited over the last couple years. Not saying that any one of them is some miracle cure, but I think there is merit to everything i posted. What my wife had was incurable, so just because it didn't work for us, doesn't mean it won't work for you. I have read a lot more, but most other stuff is more specified to what my wife had and not as general as what I listed above.

Thanks

CF

[Aeneas]

Lost my brother then close friend in the last 1.5 years. Both were terrible losses.
Both similar paths with cancer.

So sorry about your wife. I can only imagine how hard that must be, especially since you were together since you were quite young I believe.

[CalgaryFan1988]

Originally Posted by Aeneas

Lost my brother then close friend in the last 1.5 years. Both were terrible losses.
Both similar paths with cancer.

So sorry about your wife. I can only imagine how hard that must be, especially since you were together since you were quite young I believe.

Thanks. Yes, We were together for 15 years, I was 21 and she was 18.

I am sorry for your loss as well. Losing two close people, including a brother, so close together must be very hard. Hope you are strong and getting through the days as good as possible.

Edit: wanted to add, my psychologist recommended the book "when bad things happen to good people" by Harold Kushner. A lot of people found it quite helpful, when dealing with a loss.

CF


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[Aeneas]

It was funny, not really funny, but odd; my friend died almost exactly one year after my brother. I found myself at the same lecturn, same room, same funeral home giving a speech.

My brother was always funny right up until the end, he wanted a Monty Python esque funeral. I was charged with being funny ("no tears allowed") on the worst day of my life. I sang the Philosopher's song at my brothers funeral.

Small world. A CP member I had met once before turned out to be a friend of my brother. He was at the funeral.

As to the thread, my brother read so much, went to many info sessions. He did everything he could to live. They gave him 3 months to live the second go round, and he lived 3 years. I am trying to do some of the things he learned.

When he called to tell me it was over (just rec'd the 3 months "get your affairs in order" from the doctor) the end was near; I didnt know what say. I just said I am so sorry. He answered, "better me than you."
That was my brother.

[CalgaryFan1988]

Your brother sounds like a very good person, like my wife. When she was told she had a few months to live, she said "I'd rather it be me than some elderly person or child that can't handle it, I'm young and in good shape, I can handle this".

She fought for 2 years and a month to the day.

[Roast Beef]

CalgaryFan1988 and Aeneas, sorry for both your losses.

I lost my dad in January 2012 from metastatic colon cancer. It spread to his lungs, liver and brain before the end. He ended up a vegetable that couldn't remember who we were or who he was. His biggest fear in life was of being abandoned like he was as a kid. He did not want to be in a hospital or hospice so he stayed at home. He died at home, with me laying next to him and holding him in my arms as he stopped breathing and as his heart failed.

It was a comedy of errors that led him to that point. His doctors were wrong almost all the way until his stage 4 terminal diagnosis.


Don't take no for an answer, if you feel something is wrong then demand a second opinion. Don't let an "expert" tell you how you feel about your own body. My dad was wary, but trusted the doctors over his own misgivings because they were the experts. Now I'm writing this.......

[Dion]

Cancer is very cruel in what it does to a person. To CalgaryFan1988 and Aeneas, it's unfair and I offer my condolances on your losses.

I lost my father to Colon Cancer in the spring of the year 2000. He had a colonoscopy done on Labour day and was operated on the same evening to remove a large cancerous tumour. The surgeon also found that the Cancer had spread to his liver. He was offered Chemo but declined saying he wanted quality of life over quantity. It was a death sentence and he died 6 months later.

My father chose to die with dignity and did what he could to make sure mother was taken care when he was gone. He also called in a minister and helped plan his own funeral.

One thing I learned is that the will to live is strong and people will hang on until all the tasks they want to complete is done. I got a call a week before he died saying he was on oxygen and would not last the day. The next day he was up in his bed eating his breakfast. The point to this was that my father was waiting for the sale of the winter home in Arizona to be completed with the money being transfered to my mothers bank account. Friday the sale went through and he died the next afternoon.

Patients who are dying often wait until everyone has gone home. They says it's because they feel tension in the room. In my fathers case we all told our father it was okay for him to die and we were at peace. We left for lunch and during that time got a call from the nurse saying he passed away.

One final thing. Never do an open casket funeral. We did with my father and no one would go in the room.

[Dion]

A book that was given to us when my father was dying

He created a support group called Exceptional Cancer Patients (ECaP) “to help people mobilize their full resources against the disease”. The group’s motto was “In the face of uncertainty, there is nothing wrong with hope.”

According to Dr. Siegel, exceptional patients refuse to be victims. They educate themselves and become specialists in their own care. He notes a study from London that showed a better 10 year survival in patients who show a ‘fighting spirit’ as opposed to ‘stoic acceptance’.

He believes in a mind-body connection to disease and explains this in the “surveillance theory” which states that cancer cells are developing in our bodies all the time but are normally destroyed by white blood cells before they develop into dangerous tumors. Cancer appears when the immune system (controlled by the brain) becomes suppressed and can no longer deal with the cancer cells. This is because the brain becomes so disrupted by other concerns (like stress, or unfulfilled lives); it takes its attention away from the cancer cells.

He reminds us that the way we react to stress is more important that the actual stress itself. He quotes Elita Evans who wrote A Psychological Study of Cancer in 1926 “Cancer is a symbol, as most illness is, of something going wrong in the patient’s life a warning to him to take another road.” I think this must have been pretty ground breaking in 1926, because in 2014, I think there would still be many skeptics of this belief.

http://www.jeanlamantia.com/2014/04/...bernie-siegel/

[robbie111]

So sorry for your loss. My dad passed away from cancer in 2011 and he did the Chemo route which sapped his strength and it was very hard to watch him go.

I like your idea of sharing things that can help. Canadian researchers in particular have made great advances even in the past two years. Here's a cbc article on a promising new potential cure that doctors and researchers at the University of Windsor are working on. When I read about it in spring of 2012, I was thinking why didn't this happen earlier so I could have helped my dad.

It's dandelion root tea. It cured our rabbits cancer in the summer of 2012 (he had a tumor the size of a golf ball which shrunk to nothing after my wife and I gave him droppers full of it everyday for 2 months. The vet wanted my wife and me to put him down but I googled everything I could and stumbled on it.) I try to drink it everyday myself now as a preventative.

http://www.cbc.ca/news/canada/windso...rant-1.1248382

[TurdFerguson]

The concept of an ongoing thread for cancer makes me sad. Way to common. Lost my father to it when I was 10.

[annasuave]

I'm so sorry for your loss, 1988.

That's a tough journey to take. I've been there with my sister a couple of times. She's still with us, and still fighting, but the shadow is never far away.

There's a sort of "in-club" for those who know the ins and outs of monoclonal antibodies, herceptin, t-counts etc, that I don't wish anyone membership in. At the same time, its funny (and NOT funny) the things that get said to cancer patients. My sister and I joke around that one day we're going to write a book of "Dumb Things People Say To Cancer Patients".

I'm never going to write that book, its just not that funny. But if I could offer a few pearls of wisdom for those wishing to avoid saying something dumb to someone facing cancer...

1. Call. Say hi. Make it cheerful, and be brief. When my sister was ill, over and over again friends and relatives would call, choke up, say they were so dreadfully sorry and then either cry or ask her "what are you going to do?" Time and time again, she wound up trying to console someone who was crying because SHE was sick. No cancer patient wants to invest their precious time and energy in helping someone else work through their feelings about them having cancer. They need all their time and energy for themselves. Be yourself. Be upbeat (but don't try to deny the facts). And be brief.

2. People getting chemotherapy feel sick. The chemo is literally poisoning them and killing every actively dividing cell in their body. They're tired. They ache. They're overly sensitive too smells. They're guts don't work right, and they're immunosuppressed. They're going to get tired very easily, and while they'll love to know you're thinking of them - they're really not in a position to welcome you to their home, find a vase for the flowers you brought, and probably want to STOP thinking about their treatment and prognosis for a while - not rehash with everyone who calls. If you do visit, don't wear perfume or cologne. (Its tough to tolerate for some patients)

3. Don't bring flowers. Stop by the store an pick up a litre of milk, a loaf of bread or a head of lettuce instead. They're too tired to grocery shop, and the smell of the flowers might make them queasy. Offer to take out the trash or shovel the walkway on your way out.

4. If you have the slightest sniffle or cough - don't visit. Some cancers are treated very aggressively and on a very tight schedule. The slightest infection in a cancer patient can introduce a delay or break their schedule. Visiting a chemo-patient when you're not 100% healthy can quite literally deny them the life-saving treatment they need. (And waste tens of thousands of dollars too. Many of treatments are tailored to individual and are prepared just a few hours in advance of the treatment. If a patient shows up for treatment, and their immune-status isn't good enough to receive it, the medication must be destroyed.)

5. Let your cancer-friend invite your into their world. Allow them to share the details of their treatment with you, or share their doubts and fears with you -- or not, depending on their needs. You don't want to be the person who reminded them about how serious their illness is, when they only just managed to put it out of their head for a minute or two.

Whew. Well. Apparently there were some things I wanted to get off my chest. Thanks for letting me vent.

[Flamesguy_SJ]

I lost my father in 2012 at the age of 60 to malignant melanoma that had somehow ended up all through his brain and nowhere else in his body. He had been complaining for about a month about a bad headache, and then one day in March (a day or two before I was scheduled to leave for Calgary to watch a couple games, actually) lost most of the function of his left side. We thought it was a stroke, but we quickly learned in the emergency room that his brain was "Swiss cheese", as the ER Doc put it. In my 25 years of existence up to that point, I think I remember my father being sick once; in 35 years of work, he literally never took a sick day. He never drank a drop of alcohol (neither did his father) and never smoked, so it was pretty shocking to all of us.

He was given a prognosis of 6 months to live, and never left the hospital once he was admitted that day in March. He went through both chemo and radiation, and to this day I have no idea why. The small benefits that he might have gained from those treatments were completely and utterly dwarfed by the misery and pain he and the rest of my family experienced. I don't question whether chemo and/or radiation are an effective treatment for cancer; I question the decision to put someone like my Dad through it when everyone knows going in that there won't be any chance of beating it.

I will say that my family were extremely lucky that my Dad was always completely aware and understood what was happening, who he was, who we were, etc. It's pretty much a miracle that he was even conscious most of the time given the state of his brain, and he was always upbeat and positive. It also helped that the nurses on the Neuro floor were amazing, not just with my Dad, but with all the rest of us. The hospital became a home away from home for my family and a large part of that was because of the nurses and doctors working there providing us with such support and care.

My father died in June of 2012, just over 4 months after being diagnosed and after 2 weeks in palliative care. I miss him everyday, and it breaks my heart to think that he won't get to see his grandchildren grow up, or that I won't be able to ask him for advice on life, or that my girlfriend will never meet him.

[EldrickOnIce]

I appreciate seeing this thread. Sometimes it helps knowing you're not alone - it always feels like you are.
My wife (40) is in a real tough battle for her life right now. She's a brilliant, beautiful Dr. of science who is the strongest person I know - and I think consequently cancer has been a particularly nasty, dirty, lying, treacherous b*tch to her.
Im not sure we'll have a feel good story here, ever.
One feels so useless most of the time

[Phanuthier]

Sorry for your loss CF1988. 33 is just too young.

My uncle passed away last month from cancer. Cancer sucks. My mother was diagnosed ~2 years ago, but is now cancer free.

Personally, I have a lot of opinions to causes of cancer and lots of people have lots of opinions on them. The only thing I will say to that is, a lot of people will say "well its scientifically proven that it does not cause cancer" - I would say beware, to empirically understand the long term of these affects (and to get direct linkage) is incredibly hard, esp if you want to publish this, and how the experiments are done. And experiments et al to try to prove this stuff is very tricky - so just cause it hasn't been proven yet, does not mean its going to be ok. Personally, my wife is a researcher in the field (cell differentiation in systems biology) ... I personally believe in 50 years time, it will be alarming how many things we do to cause hard to our bodies, and we're going to ask ourselves "how could we be so god damn stupid" ...

[Luder]

I would like to pass my condolences to all that have lost someone to cancer, it's a vicious, unforgiving disease. I lost my Mom last December 15th to cancer, a two year battle that went from being cancer free at one point to invading her liver and brain (malignant melanoma), the awful disease turned my Mom from a 60 year old lady to a 5 year old child in the span of 2 weeks.

We buried my Mom on Dec 19th, my wife's water broke on the 20th, and gave birth to our beautiful daughter and 1st Grandchild on the 21st, a pretty surreal week. The only advice I can give, and it is so cliché, don't take anything for granted, call your folks at least once a week, let them know you love them, they aren't going to be here forever.

CalgaryFan, I am so very sorry for your loss,my best wishes to you and yours.

[CalgaryFan1988]

For melanoma, this is one of the best articles I have ever found. Wanted to make sure it was included.

http://www.cancer.org/melanoma-skin-cancer-pdf

[CalgaryFan1988]

In my opening post, I spoke briefly on PH levels potentially causing disease (according to health stores that I spoke with). This is a brief description of what I was talking about.

http://www.naturalhealthschool.com/acid-alkaline.html

[prarieboy]

Originally Posted by CalgaryFan1988

For melanoma, this is one of the best articles I have ever found. Wanted to make sure it was included.

http://www.cancer.org/melanoma-skin-cancer-pdf

Thanks for posting this, I don't think people realize how deadly skin cancer can be.

I lost my Mom to Nodular Melenoma. She was 66.

[You Need a Thneed]

5 Years yesterday, my mom died of metastisized breast cancer.

2 weeks before she died, we did not even know for certain that she had cancer (though we suspected). She had breast cancer roughly five years prior, which we though she had succuessfully survived.

My mom had progressively gotten worse over the summer of 2009, but fairly slowly. She had been going through a series of tests, but with waiting for results, and scheduling the next test, etc, it was taking a while. Finally, my dad took her in to Emergency when it was clear that her brain was getting fuzzy, and she had no energy to do anything other than sleep. She had really taken a quick downturn in the previous day or two. She passed away 12 days later, never having returned home.

[Gundo]

My sympathies to all that posted for your losses and my heart goes out to all families that have been effected by cancer.

I myself am a 2 time Cancer survivor. When I was 20 (now 32) I was on vacation with my grilfriend I'm Europe. When I felt a lump on my right testical. After 4-5 weeks of using it as a excuse to get her in my pants by saying "does this feel normal?" It was apparant something was not normal.

I was unable to walk, stand or sit without being in severe pain. After sucking up my pride and going to a walk in clinic for an exam. I was told it was a cyst and given medication and told I should feel things getting better in 24-36 hours. Roughly 10hrs later the pain became unbearable and I went to a different clinic, within 15 minutes of seeing a doctor I was told I had an emergency CT scan booked at the Foothills at 7am the next day. By 7pm that next night I was in post Op waking up from having a tumor the size of a mandarin orange removed from my body.

After being give a couple of weeks to heal, I was monitored closely and eventually told that I had Stage 3C testicular cancer. My nymph nodes and lungs had signs of cancer through them. What ensued was 6 months of chemo therapy, blood tests, cat scans and MRI's eventually 16 months after I was diagnosed clear and given a long term monitor/maintence schedual with my Oncologist and told my chance of replase after 5 years was less than 2%.

Ffwd 7 years. My same girlfriend who at this time is now my wife and I are trying to have a baby. Due to the complications that come with testicular cancer & chemotherapy I'm subject to an abundance of tests and ultrasounds. During one of these ultrasounds the technition see a mass that is not normal. Within 30 minutes of discovering the mass I am told that I once again have fallen victim to Testicular cancer. After the inital shock/anger & sadness my wife & myself meet with my Oncogist and find out luckily it was caught extremely early and a simple surgery would be able to remove the cancerous mass from my left testical.

Five years, hundreds of blood tests, numerous CT scans, daily hormone replacmemt therapy and one 2.5yr old miricle of a son later. I was just given a 5 year all clear about 6 weeks ago.

Needless to say if any of you have a son, please please PLEASE inform them of how to screen for testicular cancer. It generally strikes boys in their mid-teens to early twenties

Now unfortunatly I'm helping my mother deal with Metastatic Melanoma which started as a spot on her skin 3 years ago, resurfaced last October in her lymph nodes and just 6 weeks ago reappeared as a 3cm tumor on her brain. We actually just got home from an MRI 2 hours ago and when signings SRS Radiation treatment Wednesday.

Cancer plays no favorites and we really never know how it will effect us but if someone you know is affected please remember we require your support not your sympathy.