Discussion in 'The Pub' started by michael.e, Jun 13, 2019.
It’s a very hard choice. I tried to avoid it but I’m positive it saved my life.
I’m not trying to be a jerk, it it’s statements like these that really show how dangerous ill-remembered anecdotes can be. Your mother didn’t have untreated colon cancer for 20 years, that’s not how it works. Maybe she had a polyp someone wanted to take out and refused. The decision to pursue chemo has to be done in an informed and thoughtful way, weighing chance of cure or life extension vs. side effects. But it’s pretty irresponsible to blithely speculate that people with cancer are going to live 20 years if they simply refuse treatment.
There are a lot of different chemo drugs depending on what kind of cancer you have. You won't really know how you'll react to the chemotherapy until you go through it. I had around five months of chemo in 2016 and it wasn't nearly as bad as I thought it was going to be.
I got a combination of two drugs, one in pill form and the other intravenously every Thursday. I felt really good on Thursday (probably because of the drugs that prevented nausea) and got a fever every Saturday.
Saying what you would do, if you need it, has no connection with any decisions you make when you do need chemo. Going into life saving mode clarifies the thought process. Also, there are many different types, varieties of chemo. Some much more punishing than others. It's hard to generalize. If you say what you have and will need, it's easier for others who have had similar treatment to chime in.
Crikey. No advice to give but I wish you all the very best.
She had surgery more than once or twice to remove growths, but refused chemo and radiation. It was a slow process, but the tumors eventually claimed her. It was approximately 20 years that she was in and out of hospitals with "abdominal problems." She told us (her kids) that it was caused by some mesh that they used to repair some kind of hernia. It was when she went into hospice and I got power of attorney that the doc finally told us the truth. She did live with it for 20 years, but it was not pleasant or anything that we would think of as quality of life. But in retrospect it was easier on her than the chemo and radiation would have been, and I believe she would have passed sooner if she had submitted to chemo and/or radiation after each surgery. In the end it was her choices, nothing we could do about it. Considering that she ate total crap junk food and never exercised a day in her life, it is actually kinda surprising that she held her own as well and as long as she did. After seeing the medical records I was amazed that she made it to 75, let alone 83.
It wasn't meant to be a recommendation, and I doubt anyone on this forum thinks I'm a doctor. It was meant to be anecdotal observation, and it was not "ill remembered." You apparently needed more details, well there it is.
I fear that this decision is what all too many of us will have to face at some point. It seems though cancer is steamrolling through our population, like a restless demon.
8 years ago, I watched my then 59 yr old father, whither away from lung cancer. By the time he was diagnosed, he had a tumor roughly the size of an orange, in the upper lobe, of his left lung. He fought valiantly for 13 months, before he succumb. This is easily the worst thing that I have experience in my 48 years on this planet. Not only was he my hero, but he was also my best friend.
The real question about chemo (the one all of us can have a differing opinion about, until we’re the ones looking over the edge), is a matter of quality over quantity. Do I want to live a little longer, with a decreased quality of life, or do I want to have a little better quality, for a shorter time? Only you/we can answer this. Of course, I’m speaking to cancers where palliative care is the main focus. If I’m diagnosed with a highly survivable cancer, than chemo no question.
In any event, questions like these, scare me more than anything else on earth.
To the OP, and others affected, god bless you all. And I’m sorry any of us ever have to have this discussion at all.
I'm a Brain Cancer patient GBM or Glioblastoma Multiforme Grade IV wild type. The treatment is much different. I've had several cycles of Temodar an oral Chemo. It's generally tolerated pretty well. No loss of hair (the radiation did that) no nausea, Just fatigue. As far as I can tell Cancer is a highly individualized disease My Glioblastoma Multiforme Grade IV is different and has a different genetic makeup than someone else's. That means that the treatment has to be personalized also or at least that's the conventional wisdom.
Also as far as I can tell most neurological Oncologists view cancer as a genetic disease. There is another school of thought that treats cancer as a metabolic disease. IMHO most oncologists fall into the former category.
I've learned that the oral chemo is a lot easier to deal with than the infusion variety which is more toxic so your hair falls out and you get nausea etc because it's killing your fast growing "A" type cells like hair and the lining of your stomach.
There are very few chemo's that can cross the blood/brain barrier.
Without treatment GBM will kill you in about 90 days. First step...remove the tumor or at least as much of it as possible they got 100% of mine. Next step is chemo and radiation for 6 weeks. Now life expectancy is 12- 18 months. With the Optune device and 5/28 chemo cycle with Temodar your up to about 24 months with 5% live to 5 years.
I'm 62 years old and healthy as a horse with 5 kids and 3 grand kids and a beautiful wife. If I was 85 I might have just said screw and let things take their course but I've got a lot to live for and I'm going to fight like hell. So Yes I'm going to do everything the doctor says. I don't look like a lab rat and I'm not going to experiment on my self so I'm doing the chemo and I'm going to add alternative treatments as long as they don't interfere with what the doc's trying to do. I'm 7 months post diagnosis and doing great so far.
Do you really want an answer to that question?
With all sincere respect, this is practically impossible. If it were accurate, she would be a case study in a medical textbook - people just don't live for 20 years with untreated colon cancer; in fact, they rarely live for 20 years even with treatment.
Regardless, I'm glad that your mom didn't die from colon cancer at a young age!
EDIT: I just saw and read your follow-up post. All I have to say is "Wow, amazing!"
Nothing to add here ME but good luck man.
You’ve always seemed like a fighter to me so I’m thinking you’ll beat it.
First off, give yourself a leg up and get as objective about it as you can. Emotion can be as destructive as a disease. Knowing all there is to learn is a good first start (hence this thread). After the sessions begin you will be readied and expectant of the worst. I notice many here aren't candy-coating anything about chemo so you have the knee-jerk truth.
My pop battled throat cancer, beat it, then died anyway out of sheer boredom with life (or so he told me). While under-going chemo the only time I heard him complain was about food. He was a foody and his taste buds were affected. It all either tasted bad or was totally tasteless. So, i began buying him junk food like McDonalds Chicken sandwiches. Oddly enough, he liked them. Probably the MSG content.
Also, his outlook, though always kind of stoical, digressed to a sort of apathy about waking up from sleep. He'd doze off in a chair, wake up and loudly exclaim "Am I still here?! Someone hit me in the head with a hammer!" Okay, that was unnerving but he was, after all, a self styled Great Santini feeling his mortality. Kitchen pass.
A business partner of mine also went through it but his cancer (lung) was too advanced. Still, he had the fortitude to take control of the pain and emotion and pony up to each day as a new chance. I watched him go from a medium-built, toned man of 62 to a frail wisp of a cripple. But, he went out bravely, quietly and without burdening his wife and daughter with a show of regrets or emotion that would have certainly been difficult for them to take. They were already sobbing openly with guilt for all the times they could have been a better wife/daughter to him. I played a role in their lives from his chemo treatment through the point when his loss was a manageable memory.
In any event, my best wishes to you for the presence of mind to take it in stride and remain positive.
I have brain cancer. When I brought up the metabolic approach to treatment my oncologist said, "You brain is essentially floating in brain fluid which is like glucose soup. I don't think you can do much to change that with diet.
Having said that the metabolic approach to cancer my work well with cancers in different parts of the body where a metabolic approach might be more effective.
Also there are off label out of patent drugs that are inexpensive that can block metabolic pathways that the cancer uses to feed essentially starving the cancer. Jill McLelland's book How to Starve Cancer without Starving Yourself is a great resource for that.
In it she says that most of the 2000 pharmaceutical drugs on the market have 6 different uses, so that Statin drugs which are usually prescribed to lower cholesterol can also block a metabolic pathway is one example. Also check out Care Oncology Clinic.
it is crazy that the cure for cancer almost kills you.
I just went through treatment for cancer in my throat.
I had two rounds of chemo (skipped the third...it wasn't necessary and my counts were very low).
Overall, the chemo didn't bother me much. the anti nausea meds work great. I didn't lose my hair.
The side effects I did experience are ringing in the ears and food tasting terrible. The ringing hasn't really subsided yet (but I hope it does). I'm not eating by mouth yet because of the radiation...so I don't know about taste.
One of the keys to doing well is staying hydrated.
Peace to you on your journey. If any of you like, you can read a little about my journey here (I suggest going back to the beginning and starting there):
10 yrs ago my daughter received chemo for breast ca.
Rough road then... but went not as 'bad' as I anticipated. (am a retired RN, saw a lot of nasty side effects when I worked on the oncology floor).
Prolly being 22 and otherwise healthy really helped.
10 years cancer free this September. And teaches in Guatemala!
* always keep mind just as in any illness, every Cancer is different for every different person. Unique.
there can be a lot of generalities (and specifics) about anticipated side effects and how one responds and all that, or what the best method of tx is.
Finishing my last cycle as we speak. They are all different, but they all suck in their own wonderful way LOL. Family had a drip line of various different kinds for various cancers. Mine is capecitabine, an oral tablet form of 5FU (how's that for a name hahahaha) that works well on colorectal cancer. When the dr says take this crap or cancer will kill you, the choice becomes easy. The stuff has absolutely worked wonders for me, and hopefully I won't have to take it again at some point, but if so, gotta do what you have to do... I did 2 rounds of chemo, a round of radiation, a huge surgery, in line for a second but whatever... bring it on, get through it, and good luck OP, hang in there! Meet it head on!
For me not yet but most of the men in my family have some history. I like to think I will be cool and might decide the cost/benefit ratio just isn’t worth it.
I guess you just don’t know until you get the news.
Good luck to those fighting.
Thanks for clarifying. Multiple surgeries is a bit different than “refused treatment.”
As both a medical researcher and cancer patient (head & neck), I went with surgeries and radiation rather than chemo. Chemotherapies are toxic and take a toll on your body, so a lot of them you only get one shot at before you build up certain side effects, reactions, allergies, etc. I was given the option of chemo but decided to hold that until if I ever really need it later. That said, radiation was no picnic--had to go in every day for 6 weeks, immobilized/pinned down to a table and by a fiberglass mask every time. I needed sedatives to get through it without claustrophobic panic attacks, and have permanent side effects from the treatment. Bottom line is no matter what you do, your body is going to take a hit. Better than the alternative, though!
Best advice I can give is to get as many opinions as you can, and find a medical center with the best providers possible who work as a multidisciplinary team. There are "standards of care" for each condition, but there is also an art to it, so a team who will put their heads together and discuss your case is important.
I had an incidental discovery of a cancerous tumor in my right kidney a few weeks ago. The kidney and tumor come out on July 1st. No word yet on chemo- I’ll have to cross the bridge soon, however. My son and his spouse just announced she’s pregnant. A grand baby in the future gives me the desire to want to keep on going as long as I can.