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Cancer

If you have cancer.

If you had cancer.

If you know someone with cancer.

If you want to talk about cancer.

We won't pray.  We won't blame gods.  We won't give credit to gods.  

We face the diagnosis and know, it is what it is.  

To the extent that we can, we will define our own course.

Members: 20
Latest Activity: Nov 16

Cancer

Cancer changes lives.

We have to deal with medical profession.

We have to deal with medications.

We have to deal with new discomfort and pain.

We have to create dignity, where there is indignity.

We have to deal with family members, friends, coworkers, and strangers, in a changed way.

We resolve to go forward with strength, resilience, purpose, pride, and integrity.

We define ourselves. Cancer does not define us.

Discussion Forum

what is cancer?

Started by Luara Oct 8. 0 Replies

Here's a good blog on the hallmarks of cancerContinue

Men at risk of Prostate Cancer could in future be identified by Gene Tests

Started by Dr. Terence Meaden. Last reply by Patricia Sep 16. 3 Replies

Ex Nature Genetics... Genetic tests could identify men having up to 100 genes that together can raise their risk of prostate cancer sixfold. One per cent of men carry a combination of the genes that…Continue

Tags: Prostate Cancer, Genes

A Personal Cancer Blog

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Comment by C.L.A.W.S. on November 9, 2014 at 1:47pm

That's a great idea!

Comment by booklover on November 9, 2014 at 8:15am

Trees are a beautiful sign of life.  I am picturing you being there to see them bear fruit.  Peace to you too, Daniel.

Comment by Daniel W on November 9, 2014 at 7:33am

I've been following a support group for GIST, my type of cancer.  It's important to have some major filters on - the god and prayer talk is pervasive and often oppressive.

On the other hand, there is personal experience and information I've found no where else.  On the other hand, too much of it is like a sword of Damocles.

It is what it is.  I ordered a couple of trees to plant in Feb.  It's what gets me through the winter, regardless of whether I'll see them bear fruit.

Peace.

Comment by Idaho Spud on October 26, 2014 at 8:24am

Daniel, your old oncologist sounds like an astibule.  Good that you're rid of him.

Comment by Plinius on October 26, 2014 at 2:20am

I'm glad you got another oncologist Daniel, even if it was accidental.

Comment by Daniel W on October 25, 2014 at 7:21pm

Joan, post all of the politics and religion that you like!  Your passion is so energizing!  I hang on every word.  You give me hope.   Or, if you need a break from it, that's fine too.  There is plenty to discuss with gardening, permaculture, and food, and anything else.

 

Mindy, I agree with you on the jerk part.  I am not assertive when it comes to taking care of myself.  Firing him was kind of accidental.  I asked another Dr. for who he thought would be a good match, and he contacted my now-new oncologist and asked if he would take me on. 

 

James, I'm glad you got the MRI.  Compression fractures are not good to miss. 

 

Joan, I hope you like Chalker-Scott's book.  I learned from it and have read the book twice.

 

I should try the Q10.  I don't mind the cramps but it is probably better not to have them.  What I don't know is, if the Q10 would interfere with the Gleevec.  There are quite a few medications that do, and Q10 may not be studied in that regard.  Interesting to me, grapefruit juice is not recommended because it increases the Gleevec level.  But that might be a good thing....   I should check the GIST support group forum and see what they say.

 

I planted a seedling ginkgo tree in the yard.  That must mean I plan to see it grow.  Or just as well, someone else might see it grow.

 

 

Comment by Joan Denoo on October 25, 2014 at 5:24pm

Oh Daniel, Your body has been through so much. I knew when you first reported your cancer and I looked it up, I found that Gastro-Intestinal-Stromal-Tumor was a very serious form. There has been more research published since I last looked. 

I am glad you did not keep your previous CA doctor. He wasn't a good fit for you. This new one may be a better listener.

The explosive and unpredictable diarrhea is just the pits. Hope you have some good creams for your skin. 

My leg cramps were pretty intense and the Primary Dr. recommended CO Q10 150 mg a day. It is an over the counter product.

I know you did not have chemo, but my chemo Dr Rx was Glutamine for muscle performance and cell volumizer. None of these is probably beneficial to your kind of muscle cells. It is the only thing I can offer as a suggestion.

Well, dear friend, I am going to stay away from politics and religion until you are totally well. You make such insightful comments to my postings and you don't need that gloom and doom these days. This winter, we can just be in the virtual garden. I have one e-book by Linda Chalker-Scott, The Informed Gardener and The Gardens of Democracy: A New American Story by Eric Liu and Nick Hanauer. 

Please keep us posted on good days and bad. We have broad shoulders and wise-acre mouths. We will either cheer you up or die for the trying. 

Comment by booklover on October 25, 2014 at 3:42pm
I'm sorry, Daniel. I can't believe your Dr. just got up and left the room! What a jerk! I had to leave my Dr. when he started acting like he was MAD AT ME, because he couldn't help me. Vent away! You know how much we all care about you here!
James, I'm glad someone found the reason for your problem. I remember being stunned as an adult when I actually realized that just because you have something wrong, and you see a doctor, doesn't mean they automatically diagnose, & fix it. I was very naïve!
Comment by James M. Martin on October 25, 2014 at 2:21pm

Dear Dan, you are hardly alone. When I tried lifting a 12K BTU window air conditioner into a window sill, I quickly discovered that a 68-year-old man cannot do what a 48-y.o. one can, and in many case a 58 y.o. as well. I got a case of severe constipation. Not even a "feeling" I needed to go, not even after the most potent laxative on the market, a phosphate, I think. So, three weeks later, they check me into emergency, take me upstairs and try enemas, &c. to no avail. To cover their ass to seek some sort of physiological cause of my no shit, they did an MRI. Aha! They caught my abdominal hernia and my gall stones, but they found something else that meant NOTHING to a single physicians with whom I consulted (2 or 3 of them). The pathologist found a compression fracture of a lower vertebra. I had to look this and that up on the Net and came up with the solution to not shitting for three weeks: a compression fracture may cut off the vegus nerve, the one that is linked up to the autonomous nervous system. I wasn't crapping because I never felt the need to. But the fact that we do not, a great many of us, have Dr. House in the house.

Comment by Daniel W on October 25, 2014 at 2:07pm

I've been feeling down about my prognosis.  There is no reason to feel that way.  There are no current symptoms, other than - side effects from adjuvant therapy - fatigue, diarrhea, muscle cramps, and that case of pneumonia as a "Immune Suppressed Person", and the last scan was clean.  The next is in Jan.

 

This is called GIST.  I don't know if I ever said what this cancer is.  Gastro-Intestinal-Stromal-Tumor.  There is no prevention, no screening, no risk factor, and it is rare enough that most primary care doctors have never heard of it, and many oncologists have never treated it.  I knew it under its older name, gastric sarcoma.  As an internist, I have never seen another case, either.  And I have cared for thousands of patients.

 

I fired my oncologist.  He was such an ass. He didn't listen to me at all.  At each visit, his almost-only comment was to do a countdown to when we would be stopping adjuvant therapy.  There is no consensus on how long to take it, some references say 3 years, some say 5, and the oncology surgeon stated lifelong.  Most references are based on the "average" tumor,  Mine was much bigger, which has worse prognosis,  with a high mitotic rate, also worse prognosis.  No coincidence, the treatment is very very expensive.  When I mentioned, I might choose to take it longer, and if health plan would not cover it, I can find a source in Canada - cost for the same medication is about $5,000 to $10,000 a year instead of more than $80,000 a year - he didn't say a word, got up and left the room. 

 

With treatment, the rate of recurrence is 60% in 5 years, 99% in 10 years.  That is a long way away, and I should not be thinking in those terms.  Like I say, the last scan was clean.

 

I will meet the new oncologist in Jan after the next CT scan.  He was highly recommended. 

 

Like I say, no reason to feel bad.  I think it was that pneumonia.  Which is completely gone.  I still have some explosive and unpredictable diarrhea, but mostly it is under control.  No help from oncologist - trial and error, and general medical knowledge on my part.  Muscle cramps - frequent but my reaction is very strange.  They are exquisitely painful.  I have learned to know when one is about to happen, and can consciously abort most by relaxing whichever muscle it is.  When I can't, the pain is beyond description.  But I think "That means the Gleevec is in my system, which is good". Maybe some endorphins are produced, because after the cramps, comes a sensation of wellbeing.  I don't mind.  fatigue - it's like when I used to do all-night shifts, but every day.  But - it is tolerable.

 

Thanks for letting me vent.  Like I say, there is no reason to feel bad.  I am so fortunate to live in a time when there is treatment.  The surgery went so well, and is history.  The treatment is revolutionary.  It's just a kind of bummer state.  Now I can move forward.

 

Peace and good health to all.

 

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