Cancer support, resources thread

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John Canfield

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We got a little off-topic in a thread in the Winnebago section talking about cancer and how it has impacted several of us, so it seemed a good idea to a few of us to have a special area to compare stories, offer tips, resources or just provide an outlet to talk about your situation or that of a friend/loved one.

About my story.  For years I always had a few friends that were dealing with prostate cancer and my knowledge of the disease, or even detailed knowledge about the prostate was minimal. I figured I might be joining the club at some point but hopefully it would happen when I'm an old geezer and it really wouldn't matter that much.  I'll cut to the chase, a little over a year ago I had a rising PSA, the digital exam was abnormal, a biopsy showed cancer in many of the samples.  Shock.  Lots of shock.

Then the news got worse.  I had my slides sent to MD Anderson for another opinion and they upgraded the severity of the cancer.  Shock again.  Then I had robotic surgery at MD Anderson and another shock, the pathology report upgraded the cancer yet again.  Shock.  Then it was time to have a consult with a radiation oncologist and here comes a real zinger.  Since they found cancer in one of 44 lymph nodes excised, they considered me stage 4.  Wow and holy cow!

The radiation oncologist wanted me on six month's of Lupron (a hormone drug that suppresses testosterone which 'feeds' the carcinoma) followed up with salvage radiation.  33 sessions of it at MD Anderson which I just completed end of December.  I hate being on Lupron, I get hot hot flashes all of the time, it messes with my head sometimes (mild depression, and a voracious appetite) and I've gained over ten pounds since last summer.  The longer a guy is on hormone therapy, the worse the side effects become.  My RO said only one round of Lupron for me at this point; I won't be free of its side effects until this summer  :p ::).
 
We sympathize with you John, those chemo drugs are often full of major side effects. Sometimes you wonder if the cure isn't worse than the ill!

My wife Nancy has been battling Stage 4 inflammatory breast cancer for 8 years now, and gets chemo every week to survive. She's had surgery twice, radiation until she glowed, and eight different chemo drugs, sometimes as many as three different ones in a session. Side effects have included both diarrhea and constipation, fatigue, hair loss, nausea, headaches, bone & muscle pain, dizziness, burning sensations, sores on feet or in the mouth, rashes, neutropenia (low white blood count), and depression. With one drug the depression side effect was so severe she had to quit using it, but fortunately the FDA approved an new alternative at just about that time.  Our biggest problem is that her cancer is very aggressive and mutates quickly and the chemo stops working, so she has to try something different. Each one seems to be effective for 9-12 months and then the tumors start growing again.

But we are happy she is alive, and mostly able to lead a normal life. We still able to spend summers in our RV (though it takes a lot of planning), visit friends and family, dine out, go shopping, etc. Life is still good, despite the bumpy road.
 
Oh my goodness Gary, that's so much to go through - for both of you  :(.  My sister passed away at age 47 from breast cancer and my dad died in his early 50s of a heart attack, I figured I would be dealing with heart issues by now and not cancer.  I've had some people ask me if I'm now 'cured' - well, not exactly.  I'll be having a PSA test every three months and I'll know if I'm cancer free (or not) every three months.  Having cancer really turns your life around, not only for the patient but for the spouse as well.

My wife is an RN and one of her past jobs was with an oncologist, she used to administer chemo in the doc's office .  She's had patients ranging in age from little children to old folks and everything in-between.  That was years ago and there have been many advances in chemo drugs and trials underway all of the time.
 
I was diagnosed with stage 3 prostate cancer back in 2006. I received a combination of 8 months of Lupron and 45 radiation treatments. At the last appointment with my oncologist he said he considered me cured. After about 10 years my PSA is now around 0.8. With Radiation, I consider this value very good.

In 2010 I was diagnosed with stage 1 colorectal cancer. I figure it was probably caused by the radiation treatments to fix the prostate cancer. The colon cancer was in the same area as the prostate. I am now having lots of problems caused by the colon cancer operation.

Right now I feel that I am cancer free, but wouldn?t be surprised to get cancer in the other organs around the prostate.
 
Starting in 2006 my PSA starting rising, not much, but rising. DRE showed nothing. Then in 2010 the PSA spiked. got biopsy and treatment was indicated. The urologist, being a surgeon, said surgery was the Gold Standard. It is the Gold Standard, but not the only one and possibly not the best with current technology. A friend had had the same situation 5 years earlier. He opted for brachytherapy, where radioactive needles are inserted into the prostate. The radiation lasts about 3 months. I manage the IT for an orthopedic clinic. The doctors I work for said I needed the best possible treatment and contacted colleagues at Mayo. I was determined to go to Arizona for the winter and this was taking place in December. Mayo has a clinic in Scottsdale, AZ and I decided to go there. My friend said the Radiation Oncologist that did his brachytherapy also had a clinic in Scottsdale. I contacted Dr. Grado and went for an exam. He did a very though exam and did a 45 minute ultra sound exam. He said that my cancer was too advanced for brachytherapy alone. He suggested 6 weeks of Tomo Therapy radiation. Tomo Therapy is CT guided radiation. I went with his plan and it worked well. I had no side effects and my PSA is now .02. 2 years ago DRE indicated prostate totally normal. Dr Grado developed the brachytherapy at Mayo in Rochester and the University of MN. He did work out of the U of MN until a year ago. He has three clinics with complete Tomo Therapy in AZ. Scottsdale, Glendale and Yuma. He also has a clinic in Mexico for training Mexican doctors. He also refers some patients that can't afford treatement in the US to Mexico. My total out of pocket expense was just under $5,000 with Medicare.

Tomo Therapy
http://www.tomotherapy.com/

Dr. Grado SW Oncology Centers
http://swoncologycenters.com/grado-oncology-doctors-staff.htm

Brachytherapy
http://www.radiologyinfo.org/en/info.cfm?pg=brachy

Now that we have prostate cancer started, how about cardiology? Last July I had open heart surgery to replace a aortic valve and four by passes.


 
In December, 2015, I was diagnoses with advanced esophageal cancer, treatable but not curable.  I'm undergoing chemotherapy every 2 weeks and have had 4 sessions thus far.  I don't know which is worse, the cancer or the chemo side effects.  The whole story is on my CaringBridge page.
 
I am a 20 year survivor of Prostate cancer.  For those new to the disease there is a book, " a Primer on Prostate Cancer" that while somewhat old, 2002, is still appropriate.  There is more information on http://pcri.org/, www.ustoo.org as well as from a search on Prostate cancer.  Both of these groups have great information.

You will find many references to a Dr. Strum.  Many years ago there was a Cancer group on CompuServe and Dr. Strum and other Dr.s were quite active.  I credit my success in beating the dragon to Dr. Strum's free advice on that forum.

Just my 2 cents!
 
I was fortunate that my swollen prostate was benign - what they term "BHP". Laser surgery and several days on "the bag" and I was done. But I get annual check-ups now, and watch PSA like a hawk.
 
I was a volunteer with the American Cancer Society for many years, primarily due to the significant cancer history in my family. ACS has many programs, one of the most important being their support groups. I heard from many survivors how helpful it was to talk with others who were going though, or had completed, similar treatments.

The website is cancer.org.
 
I heard from many survivors how helpful it was to talk with others who were going though, or had completed, similar treatments.

So true!  I am one of those recipients.  When I got the first breast cancer diagnosis I didn't know anyone else who had it and was like a lost lamb.  The ACS "Reach to Recovery" program sent a lady to my home to talk with me.  She was wonderful!  She helped me understand what I was facing.  Then a friend of a friend who had reconstructive surgery came to tell me about that.  Believe me, those two ladies helped me so much.  I've tried to pay it back ever since by talking with others about it, including men who were concerned about their wives.

Reminder to the men:  You also can get breast cancer.  Don't ignore breast lumps!

ArdraF
 
At the age of 69 (8 1/2 years ago) after my PSA went from 1.8 to 5.9 in 4 months I had a biopsy of my prostate. The biopsy came back positive with a Gleason score of 3/3 3/4 (7). I did a lot of research and decided to receive treatment at the Radiotherapy Clinic of Georgia (RCOG). At RCOG I received 69 I-129 implants into my prostate gland. Three weeks later I received 35 doses of computer guided radiation over a period of 7 weeks. At that time I was given an 93% of a cure. RCOG defined a cure of having a PSA of < than 0.02 after 10 years. My PSA remained > 0.02 for 6 1/2 years. A little over a year ago my PSA began to ago up over 4 months of time and after the PSA reached 7 I received treatment at University of Alabama Birmingham Oncology. I was given a two week dose of Casodex which dropped my PSA to 0. I then began to take Lupron injection ever 4 months. I have taken a total of 5 injections and my PSA has remained at zero. My oncologist is advising my continuing to receive the injections ever 4 months for the present future.  I am having some side effects from the Lupron but nothing that I can't live with. I know 9 men in my church that have received treatment at RCOG ( Six in my SS class) and all are doing well except me. I was given an 93% cure rate. I guess I was the 7%. ( I also talked with Mayo and John Hopkins and was given an 89% cure rate with surgery). Even though my cancer has come back I would still go back to RCOG. I also had a heart attack 7 years ago and had 4 by-passes. I will be 78 in a month and I feel blessed that I am doing very well at this time. Now if I could just beat this arthritis. 

Important Point: Hormone injections will not cure prostate cancer even though your PSA drops. Hormones will depress testosterone production which will slow the growth of the prostate cancer, but will not cure the cancer.

Frank
 
If I may say so, this is a very humbling thread.
Makes me think hard about just where I stand in my life. No experience with Cancer in my side of the family. Or my DW's side.
Just lucky? Maybe.

Not willing to bet my life on it.

Best of luck to all. Your honesty has given me something to think about more seriously. Thank you. 
 
Went to the doc several months back complaining of sore muscles/joints in shoulders and hips. After tests found psa levels over 300.  Prostrate biopsy and bone scan revealed prostrate cancer had Metastasized into joints. Doc gave me a 4 month hormone shot and put me on casodex. I know what you're saying about hot flashes John, I usually get them every night....During the day it's just an insatiable appetite to go shopping for shoes.. ;D.

Been on the treatment for about a month or so now, and the joints are pain free. (Previously was doing about 2000mg of Ibuprofen per day to kill the pain) Will get another psa check the first part of May.
 
I am an 8 year survivor of kidney cancer.
My cancer was diagnosed after I had an "accident" on my bicycle.  I was an avid runner and cyclist, cycling 20+ miles a day at age 55, and/or running 5 miles a day.  On this particular day, I was cycling, and was cut off by a car making a turn in front of me, causing me to come in contact with the sidewalk curbing, and going down on the pavement.  Ya, I know, cycling and exercise is supposed to be healthy for 'ya!
I wasn't seriously injured, refused transportation by the FD paramedics in their ambulance, and rode my bicycle 5 miles home.  The next morning, I was experiencing a lot of pain in my right side, thought I had bruised or fractured a rib or ribs, called my Doctor, and went in for an X-ray.  The X-ray showed no problems with the ribs, but my Doctor found something of interest on my right kidney.  This was followed-up with an Ultra Sound, then a Cat Scan, and an appointment with the Surgeon, who scheduled me in for surgery a week later.
It was a long road to recovery, but this stupid accident, an alert X-ray tech, a concerned primary care Doctor, and a skilled Surgeon saved my life.
 
Mark. I am the opposite. I am the eighth of 10 kids. Mother and 3 sisters had uterine cancer. Me and my brother had prostate cancer. One sister had brain cancer. Dad died at 56 with lung cancer. One sister died at 53 with adrenal cancer and another sister died at 65 with ovarian cancer. When I was diagnosed with prostate cancer I felt as if I were lucky to only have prostate cancer.

Frank
 
I think this is a fantastic thread and I thank everybody for sharing their stories.  Awareness saves lives!!  I'll share my cancer story in short and then get to what I really want to share.

On an annual hike up the same trail I stopped much more than usual to rest.  My wife took note and was all over me to see my doctor when we got home two weeks later.  At the primary care doc I was found to be anemic, sent for further testing and found to have stage II colon cancer.  That was in 2005.  Had I been a couch potato this would not have been found in time.  I had a routine colonoscopy just four years earlier.  I had surgery to remove the tumor and started chemo after I had healed from surgery.  A severe reaction to the chemo caused a 10 day hospital stay and the chemo was discontinued.  This was a mild chemo and the reaction was rare.  That was in 2005 and since then we have had a fantastic time and many, many fun RV trips.  I should add that had the chemo gone well my oncologist was arranging for me, at my insistence, to finish my last 6 chemo treatments at my winter RV location.  I believe keeping a positive attitude and continuing your plans, as best that you can, is important in helping to cure cancer.

Now for a very important side story:  In the initial CT scan to see if the cancer had spread it was noted that I had an abdominal aortic aneurysm (AAA).  This is a silent killer!  Had I not had the cancer it is not likely that I would be here to write this.  You can have an AAA for many years and not know it while it silently grows (balloons) bigger and bigger with no symptoms.  If/when it ruptures you are a goner.  I lost two good friends this way....ruptured aortic aneurysms.  It always amazes me how many people refuse to have a simple non invasive ultrasound test that can save their life!  At least 15,000 people die each year from ruptured AAA's.  And, there are many, many more that, due to no autopsy being performed, are thought to have died of heart attacks.  Most abdominal aortic aneurysms are found while testing for something else, like mine was.

We watched my AAA via simple six month and then annual ultrasound tests.  It grew very slowly for a few years and then started growing more rapidly and approached to danger of rupture size.  I had no symptoms.  My vascular doc had me go for a special CT Scan and then told me I was a candidate for a minimal invasive AAA stent repair.  This is known as an Endovascular Aneurysm Repair (EVAR).  If I let the aneurysm get larger I would not be a candidate for this minimal invasive repair and would have to have the much riskier full open surgical repair.  I had the EVAR repair, a two day hospital stay and was back out RVing in no time.  I advise everyone 60 or older to talk to their doctor about a one-time test for an abdominal aortic aneurysm.  If your insurance will not cover it consider one of the Lifeline testing events.  And don't forget colonoscopies to prevent or catch and cure colon cancer!!!       
 
Let me second RVfixer's remarks about AAA. About 9 years ago my brother had traveled to St Louis, MO to have a cancer removed from his ear. During his return trip to have the sutures removed he began to have chest pains. He was rushed to Barnes Hospital in St Louis where he was examined for a heart attack. Only after they passed an ultrasound down his esophagus did they locate an aneurysm behind his heart in his thoracic aorta. The aneurysm ruptured during surgery. After 32 pints of blood, 4 1/2 months in ICU and 5 1/2 months in the hospital he was finally able to go home. Although he lived for 4 years, his health never returned and his bone marrow shut down and he died after suffering chronic anemia.

We were told at that time that aortic aneurysm could run in ones family, especially brothers and sons. I had a ultrasound soon after that and no enlargement was found. Last summer I was having problems with my back and had a CT done on my lower spine. A 1.8 cm aneurysm was located in my abdominal aorta. I have had 2 ultrasounds done since that time and the aneurysm has shown no enlargement. They are looking for an enlargement of 4 cm before considering surgery. I am not losing any sleep over the aneurysm. Will do another ultrasound this fall. 

Frank
 
Frank Hurst:  Keep checking that AAA at least annually.  Mine stayed at 3 cm for a few years and then started growing slowly.  The thinking then was that below 4 cm was very low chance of rupture.  Between 4 and 5 cm was a grey area.  My doc said we would not worry about it unless it got close to 5 cm or if is started to grow rapidly.  These measurements depend on whether it is symmetrical and how large your aorta is.  After a few years it started growing slowly and we continued watching it.  I wasn't worried about it as I trusted the doc and we were keeping an eye on it.  When it got to 3.8 cm I was surprised when the doc came in the room and said "OK. time to fix it."  What?  "What happened to waiting until it was close to 5 cm before fixing."  His answer was that it was growing fast enough that it was obvious that I would have to have it repaired.  He said at that time I was a good candidate for the minimal invasive entervascular aneurysm repair (EVAR).  It I waited I would not be a candidate and would have to have the more risky full open surgery.  If your aneurysm starts to grow do some research on the EVAR minimal invasive surgery, it is the way to go.  I have had three follow up CT scans since my surgery and the stent remains perfect.  Now we are going to change to annual ultrasound tests to continue watching.  Good luck with your AAA you may never have to do any repair at all.  Many remain stable.
 
I feel somewhat honored that my inquiry about the Rialta and my mention about my arrested cancer started this very informative  and needed site.
I went fishing in Montana a huge increase in altitude from my S.F.Bay area home and had trouble breathing.  When I got home I was still having a shortness of breathe, went to the doctor and was diagnosed with stage 2, lung cancer.  After several tests I was put on 4 infusion treatments approximately 3 weeks apart on Alimta and Carboplatin.  Knowing the horror stories about chemo I did not know what to expect.  After my first treatment I was feeling fine, but on the fourth day it hit me like a brick and I ended up in bed knowing I would not survive.  About 3-4 days later I started feeling better.  Conclusion was that I had not drunk enough water.  The next treatments, needless to say, got drowned and I came through them far better. These particular drugs did not cause me to lose my hair and although I was tired I now feel pretty good.  I will continue a maintenance infusion program on Alimta just to be sure.  At 80 years of age I have had a good life and am ready to go, but not if I don't have to.

Don Grimes, WIT 70041
 

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