Things NOT to say to people with Cancer...

reply to post by Cancerwarrior

I won't do chemo. I just won't. I have polyneuropathy and the one time (3 weeks) I was on a chemo drug it totally blew up my neuropathy ... I couldn't swallow, I couldn't walk, and I couldn't get my lungs to move to breath. Also, it crossed the brain barrier and made me have hallucinations and other issues. Lets just say it did a lot of damage and that was just a 'mild' session compared to what others go through. I'll die before I do chemo. I simply will not do it.

My sisterinlaw just became a leukemia survivor. She had it twice .. very aggressive. At first she was given a 10% chance of survival. But she did all sorts of experimental stuff and major chemo etc etc and now, 5 years later, she is deemed cured. She's happy to be alive, but in reality she's just a shell of who she was. She sleeps all but 5 hours a day. She can't even get a bowl of cereal without messing up the process. She had a series of little strokes while on chemo so she gets very forgetful ... like she mailed out christmas cards without any cards in the envelopes and without saying who the empty envelopes were from , and like her forgetting how many kids she has and their names.

What is your opinion on donating to cancer research?
I have always felt that it was a waste of money. Drug companies are doing research all the time and making millions by selling their products. I don't give money to Apple so they can research their new product and sell it to me at full price. I always give to charities that do good things for others such as the special Olympics or private benefit auctions for somebody with medical bills. I just don't believe any additional research is being done because of charitable donations.

reply to post by FlyersFan


That kind of makes me laugh, because more than once, I have had people I work with come up to me and apologize. The first time, I was really taken aback by it. She told me how in her 6th month of pregnancy, the baby wasn't laying right "or something", and she got sciatica down her left leg. She had to go on early maternity leave, and go on bedrest, because it hurt so badly to walk or even stand, until the baby was born.

When she'd had the baby, and come back to work is when she approached me. She seemed really embarrassed, and said, "I want to apologize to you."

She explained the above, and then went on to tell me that she always thought I was exagerrating, making the pain seem worse than it was, and that she was sorry she judged me. She said she had no idea what that sort of pain was like until it happened to her, and she felt horrible for having been so judgemental.

I actually felt bad for her, because I never knew she felt that way, and it took a lot of courage to come to me and to admit that.

After that, she would ask me how I was doing, and I knew she was one of those rare people that was really wanting to know. She genuinely cared when she asked. If she saw me, and I was having a one marble day, she knew it, she would tell me, "You are hurting today? I can see it in your face and walk."

And here I thought I had the world fooled! She knew, because she'd been there.

And, like I said, it has happened several times. I usually don't find out how they felt till after the fact though. Something makes them confess!

reply to post by Cancerwarrior


You are right, I have been seeing a lot of education about melanoma and sun protection lately. I think that is a good thing, but I also think it should start early in school.

My daughter-in-law to be who just died recently had told me her kids were having field day last year at school. They required a bottle of sunscreen and very specific clothing. I was very happy to hear it. She was a bit peeved, but after we talked, she understood it better.

I definitely think something has changed, you can find threads here with people asking if the sun seems hotter than it used to.

I know I am so fair skinned, that I burn in 15 minutes without sunscreen, and even with it after just a bit longer. I have no idea what to attribute it to.

Melanoma, once it starts, is hugely aggressive. That's the key in educating on it, though. Most people don't know what to look for, or know to get skin screenings.

I know, too, we often talk at work about the large increase in brain tumors we have seen lately, and especially melanomas.

Your experiences are very educational. I was unaware of the types of chemo, and I work in a hospital. What I see are more tumor removal and debulking (brain masses) and seeding with radiation treatment. We don't have chemo in my area, so it was something new to me.

You are so strong to have gone through what you have. It is amazing. I know the gist of the treatment, but not in the ways you described it.

There is a lot to admire about everyone in this thread. Amazing people, with amazing strength!

reply to post by FlyersFan


I never knew you had been through so much. I admire you, no matter what stance you choose, it is yours to choose. I can totally understand why you don't want to, it sounds like that experience was terrible.

I am glad that you posted, because I didn't know what you were going through, and even though I admired you anyway, this certainly strengthens my admiration of you.

I always saw you as a fiercely strong person, and it was for no particular reason, just how I saw you, but now I think I understand more why.

I am glad you shared, and glad I saw it, and I am terribly sorry for your suffering, as well.

"You know weed and baking soda cures cancer right?"

Not so sure about the baking soda thing, and weed wont cure anything, but it could sure make the rest of your life a lot more enjoyable.

Hopefully you're in a medicinal state so you could at least try it, its #1 argument for medicinal qualities is for cancer patients. My friends mom was at stage 4 and was anorexic looking as is and couldn't eat a thing, she was likely to die very soon from not eating, we got her to try it and miraculously she was able to start eating more then she ever had before, and generally seemed a lot happier.

you don't have to get totally baked or anything for it to work, and choose a pure indica strain if possible (if your in a medical state the dispensaries will know what will help you).

I cant vouch for any of the homeopathic remedies or any other wierd stuff out there, but what do you have to lose? If (more like when) I get cancer I will try these things and document the process, at least help the community with useful information in my last days as I will refuse the chemo pain trap.

Also maybe look into experimental drugs, my mother in law was on the brink of death when they decided to try some for her, she has been cancer free for 3 years now.


You may not have wanted to hear any of this but I had to toss it in here anyway.

reply to post by FlyersFan


I totally understand and I don't blame you at all. I wish I had another option at the time but my melanoma did not have the B-raf mutation, so the only treatment they knew to do is the interleukin/chemo and hope for the best. Turns out only 3 people out of a hundred have the response that I did to the treatment, which is complete N.E.D. (no evidence of active disease) I had endoscopic surgery to remove that huge dead sinus tumor and gamma knife for the brain tumor I had at the end of chemo.

The chemo/IL2 certainly did a number on me and few things scare me as much as the prospect of having to do it again. You're not supposed to take it for 18 months after your last treatment because that's how toxic it is to your body and its been about that long for me so I could have it again if the Melanoma comes raging back. So if there's other options you have, by all means exercise them.

That's pretty rough for your sister in law. It sucks to watch a loved one go downhill. All you can seem to think about is how they used to be and not how they are now. I have to remember that when i'm dealing with my family/friends who seem distant or cold or willingly ignorant of the facts. Sometimes I get so caught up in myself that I forget how watching me go downhill affects my family.

Don't you just love neuropathy? I did'nt know such a thing as nothing could hurt so much. My feet and back feels like they are are falling asleep with pins and needles on a good day and on fire on a bad day.

Yours sounds more severe though. Do you take statin? If so do you find it helps? My Dr. wants to put me on it but I dunno about the side effects.

reply to post by Libertygal

I definitely think something has changed, you can find threads here with people asking if the sun seems hotter than it used to.

I was looking at old pictures the other day and there were a few from when I was a little kid where I was playing outside. All I could think about was how the sunlight looked yellow back then and now its just white and bright. I've read alot of threads on here where people show that all the planets in the solar system are experiencing some kind of atmospheric and temperature changes, not just earth. So that tells me that the Sun is doing something to the whole solar system.

I know I am so fair skinned, that I burn in 15 minutes without sunscreen, and even with it after just a bit longer. I have no idea what to attribute it to.

Yeah I was the same way. I always had jobs outside in the blistering southern sun and never gave it a second thought. Even though I was always pale complected I just wore long sleeves/pants and wore a brim around my hardhat and drank lots of water. I kinda looked like a matchstick if you saw me with my shirt off.

I try and tell some of my wifes co-workers (they're all hairdressers that love the tanning bed) about Melanoma and don't take chances with something like this disease. Most of them just ignore me and do whatever because they are young and when you're young you are going to live forever you know. I call it the Bad stuff only happens to other people, not me mentality. I was just as guilty of that attitude as well before I got sick though, so I guess its natural.

I know, too, we often talk at work about the large increase in brain tumors we have seen lately, and especially melanomas.

I'm curious, how long have you been working there and what percentage would you say Melanoma brain tumors are more prevalent now?

reply to post by A-Dub


You're preaching to the choir bud.



Unfortunately I don't live in a state where it is legal, but its still easily obtainable if you know a few good ol boys that live in the woods. And luckily, I'm a good ol boy that lives in the woods.

It has a a wide range of benefits for cancer patients especially. It helps with nausea and appetite, it helps to keep food down when you actually can eat something and it helps with depression quite a bit. It may not cure it but it helps make the side effects to be more bearable.

I guess my point there is all of the people who tell me about this or that curing cancer. I've heard it all from a vegan diet to Goji juice.

There are some experimental drugs that have been shown to effectively treat Melanoma but you must have a mutation known as b-raf in the DNA of your melanoma. 70 percent of Melanoma patients have this mutation but unfortunately, I don't. So I'm not really a candidate for many clinical studies.

One thing though was my spinal cord melanomas are very very rare. Only 38 people in the world have ever had it happen to them. So the hospital decided they wanted to do a case study on me and put it in a medical journal. Kinda cool I guess in a effed up way but hopefully it can help someone else that it happens to.

reply to post by Cancerwarrior


You are right about that, the doctor even looked happy when he gave me the news and now that I think about it, it gave me lots of hope. I never thought that I would be staying at the oncology floor for 26 days with my babygirl but I never lost hope.
Shaving my head was a good experience in every way. But really it is nothing. When her hair fell off we put it all together (it was gone within 48 hrs) and put it under her pillow for the hair fairy (I thought I was so smart to "invent" such thing, I didn't know a lot of cancer parents have done this before) and she got like $20.00 so she was super excited. She never got sad or upset.
A nurse gave me great advice before we left the hospital. Take one day at a time.
-Denyego26

Cancerwarrior
I just need to vent I suppose. I have been sitting around thinking about this all morning and I have some advice to folks who may have a friend or family member dealing with Cancer.
(no reason given)