Cancer Survivors

Talk about things that are not necessarily related to music or the guitar.
Laudiesdad69
Posts: 911
Joined: Tue Nov 29, 2016 1:16 pm

Cancer Survivors

Post by Laudiesdad69 » Thu Mar 02, 2017 2:52 am

Just wondering if any of you fellow delcampers have had a diagnosis of cancer? And if so, how long did it take the doctors to figure out what was actually going on. I am facing the possibility of hairy cell leukemia, if they can prove it. It seems that we won't know for sure until I have my spleen removed. My last bloodsmear was negative. But the cancer doc isn't quite convinced, either way yet. So more blood work, and more MRI. He was convinced that I had this last year because of blood work and signs/symptoms (enlarged spleen).

But I am constantly tired and cold, and I spend more time on the forum from bed than I do playing my actual guitar. I'm also a brittle diabetic, so that adds to the fun. This is really cramping my style. I had to miss a master class with Sharon Isbin because I was too sick to get up out of the bed that day.

Anybody else dealt with this kind of thing? Perhaps we can be of support to each other? How did it change your life? I wish they could tell me yes or no, either you have it or you don't. Then I could proceed with treatment and get on with life.

tcee
Posts: 54
Joined: Wed Feb 08, 2017 2:54 pm

Re: Cancer Survivors

Post by tcee » Thu Mar 02, 2017 7:54 am

Hi Laudiesdad69,

I had a non-hodgkin lymphoma including a relapse a few years ago. It also took my doctor a while to figure it out. At first he told me that it wasn't cancer but then they sent the surgically removed lymph node tissue to a specialist somewhere in France and he diagnosed it as an NHL. Waiting for a diagnosis is probably the hardest part and there actually is relief in getting it, even if it is cancer, because you know how to proceed with your life.

My only advice to you would be to definitely get a second opinion on diagnosis and treatment. And make sure that you not only rely on the conservative treatments but change your life (diet, exercise, psyche etc.)

If you have any questions concerning the treatment or other issues I am happy to answer them. Get well soon!

All the best,
tcee

Monteverde
Posts: 72
Joined: Mon Nov 16, 2015 2:54 pm

Re: Cancer Survivors

Post by Monteverde » Thu Mar 02, 2017 2:17 pm

Hi Laudiesdad69 --

I agree with tcee that a second opinion is worthwhile, if you can manage it. I'm sure you're aware that the Knight Cancer Institute at the Oregon Health Sciences University in Portland is one of the leading cancer centers in the country; perhaps that is where you are already receiving care, but, if not, it is worth considering a second opinion there if doing so is feasible for you.

Best wishes.

Joe de V
Posts: 1853
Joined: Mon Nov 05, 2007 12:34 am
Location: Northern California USA

Re: Cancer Survivors

Post by Joe de V » Thu Mar 02, 2017 4:22 pm

Hell Laudiesdad69...15+ years ago I was diagnosed with prostate cancer. I was already in my 70's and also a diabetic. The current protocol for prostate cancer uses the "Gleason Scale" in determining the severity - from 1 to 10 - of the cancer. The first test result made by my local Hospital Urologist and Cancer specialist called the sample a Gleason "6". I asked for a 2nd opinion and the sample was sent to the Stanford Medical Center in No. California.The results came back with a Gleason"8" reading. I wanted a 3rd opinion from my local VA Hospital They called a Gleason "7" reading.

What did I learn from this experience ? That there is value in asking for a 2nd opinion - in my case there were 3 opinions and they were all different -
My objective was not to prove wrong the first diagnosis but to find the severity of the case to decide the prefered most suitable treatment for my specific case. I met with the Medical Oncologist and jointly decided to treat it as a Gleason 8. Because of my diabetis and age at the time I received 38 Radiation treatments pinpointing the local spot of the cancer. I have annual check for my PSA and has remained well bellow 1 for the entire period to this date. The Oncologist MD later told me that my desire to participate in the decision for the treatment was an important factor in my positive outcome. He added that not very many patients suffering from cancer become active in deciding treatment - They leave it to the MD without much questioning and participation in their part. Be an Active Participant and ask as many questions as you need to know about the choices, if any, about the treatment for your condition. Be a Participant and you will feel more confident about "beating" the cancer. Best Wishes For success in treatment.

User avatar
Yisrael van Handel
Posts: 478
Joined: Wed Jan 11, 2012 5:26 pm
Location: Modi'in Illit, Israel

Re: Cancer Survivors

Post by Yisrael van Handel » Thu Mar 02, 2017 4:46 pm

Laudiesdad69 wrote:Just wondering if any of you fellow delcampers have had a diagnosis of cancer? And if so, how long did it take the doctors to figure out what was actually going on. I am facing the possibility of hairy cell leukemia, if they can prove it. It seems that we won't know for sure until I have my spleen removed. My last bloodsmear was negative. But the cancer doc isn't quite convinced, either way yet. So more blood work, and more MRI. He was convinced that I had this last year because of blood work and signs/symptoms (enlarged spleen). Anybody else dealt with this kind of thing? Perhaps we can be of support to each other? How did it change your life? I wish they could tell me yes or no, either you have it or you don't. Then I could proceed with treatment and get on with life.
Laudiesdad69,
I also have hairy-cell leukemia. First of all, there is a routine test for hairy-cell lymphoma. I have no idea what country you are in, but in Israel it is routine to do a bone marrow biopsy. The procedure is very quick and I had no discomfort. By looking at your B cells under the microscope, the pathologist can see definitively whether or not you have hairy-cell leukemia. Secondly, hairy-cell leukemia is normally an indolent cancer, that is rarely fatal. When there are too many deformed blood cells and your immune system is being weakened, there is a treatment that usually helps for many years. During treatment, you do have to be very careful not to come into contact with anyone (because you will be prone to infection) and to go to the hospital immediately if you suspect any kind of infection. The treatment lasts five weeks. You must be under constant supervision of a competent hematologist. I have blood tests and visit to hematologist every three months, and a CT once a year. So far, I have had no symptoms at all and no need for treatment. But the lymphoma is creeping forward slowly, and I must remain under constant supervision of a hematologist. I am not a physician, but I would get a second opinion before I let someone remove my spleen without knowing the reason. If you are in a country where you can get an MRI, then you should certainly be able to get a simple bone marrow biopsy. Take a look at information on the internet about hairy-cell leukemia. The Mayo clinic and the national health services of the USA, Canada, and Australia are reliable sources of information, among many others. Are you a Vietnam veteran by any chance? Lots of veterans got hairy-cell leukemia from exposure to Agent Orange in Vietnam, and the Veterans' Administration has special programs for it. I wish you the best. Please get good medical care from a hematologist. Feel free contact me privately. And if you happen to be an Ashkenazi Jew, it comes with the territory. For some reason, we happen to be more prone to hairy-cell leukemia than any other ethnic group.
Yisrael van Handel
Modi'in Ilit, Israel

User avatar
Yisrael van Handel
Posts: 478
Joined: Wed Jan 11, 2012 5:26 pm
Location: Modi'in Illit, Israel

Re: Cancer Survivors

Post by Yisrael van Handel » Thu Mar 02, 2017 5:12 pm

Laudiesdad69 wrote: I am facing the possibility of hairy cell leukemia, if they can prove it.
I was smart enough to figure out that you are in Springfield, Oregon (this is stated explicitly in your signature). I just did a quick search and found at least a dozen hematologists in the Eugene/Springfield area. For some reason, half of them are in the 3300 block of Riverbend Drive. I urge you to find one who is a good diagnostician (physicians are rated and reviewed on the internet; search for "hematologists Springfield, Oregon") and get a definitive diagnosis. From your description of symptoms, you should not put it off. Is chemotherapy an option? Chemotherapy for hairy-cell lymphoma is completely different from the kind of chemotherapy that is used against common cancers. You can read about it on the internet.
Yisrael van Handel
Modi'in Ilit, Israel

CathyCate
Posts: 504
Joined: Mon Jun 01, 2015 2:25 am
Location: Metro Detroit, Michigan

Re: Cancer Survivors

Post by CathyCate » Fri Mar 03, 2017 5:25 am

Laudiesdad
I am married to a cancer survivor and continue to be amazed by the courage he has shown in his battle with multiple myeloma diagnosed in 2012. He felt fine then, and anemia was his primary physician's only clue. We now have an expert medical team at Karmanos here in MI and the necessary and welcome support of family and friends. In short, help is available and this is not a time to be shy or reticent in seeking it out.

If you are not familiar with the Leukemia and Lymphoma Society here in the U.S., I suggest contacting them. Their assistance comes in many forms from basic information and seminars to financial help with meds and the like.

I sincerely hope that many and better days are coming soon for you!
CathyCate

User avatar
oski79
Moderator
Moderator
Posts: 9019
Joined: Fri Feb 08, 2008 4:12 pm
Location: Sebastopol, California

Re: Cancer Survivors

Post by oski79 » Fri Mar 03, 2017 5:34 am

Laudiesdad... First of all, so sorry to hear this. And thanks for being brave enough to come public here for input.

My experience is a close loved one who was diagnosed with NHL. She was very lucky-- she found a lump on her breast and called her doc that day. Turned out to not be breast cancer, but NHL, which is really fortunate because the disease almost never manifests itself on the surface. Usually it is not found until it is very advanced. She was still stage 1, and needed only three chemo sessions and 20 radiation treatments.

She was in Seattle at the time, and was told numerous times that (a) if you're going to have cancer, NHL is the one to have, and (b) if you're going to have cancer, Seattle is one of the best places in the world to have it. The resources, between Swedish, the UW med center, the Hutchinson Center, and the Cancer Care Alliance, are top notch.

Wish you the best. Be strong, and do what you have to do.

Regards,

oski79
“People may say I can’t sing, but no one can ever say I didn’t sing.” --Florence Foster Jenkins

Laudiesdad69
Posts: 911
Joined: Tue Nov 29, 2016 1:16 pm

Re: Cancer Survivors

Post by Laudiesdad69 » Fri Mar 03, 2017 6:28 am

Thanks everyone who posted. I guess this problem is quite a lot more common than I thought. So grateful for all of you who shared your experiences. I worked for many years taking care of patients who were mostly terminal. I met my wife at work in the hospital, and I was a primary care giver for her mother when she had lung cancer. I had her on the ventilator for six weeks and we finally got her weaned off of it, and got her to where she was able to go home, where she later died. My wife thinks that I was a really good care giver for her mom. I had her everyday that I was on working for that six week period. I probably wouldn't have had the chance to develop the relationship with my wife had I not taken care of her mother.
I should probably clarify that I was a limited scope practitioner. I worked under a pulmonologist. My scope of practice was cardio-pulmonary only. But as far as general cancer expertise, I am very limited. So I basically I have your run of the mill knowledge as far as leukemia goes. Basically, it doesn't matter how much knowledge you have, you are never prepared to have it happen to you. Cancer sucks, but if it weren't for cancer I wouldn't have my best friend wife that I now have. And I know that whatever happens, she will be with me. Thank you all.

Laudiesdad69
Posts: 911
Joined: Tue Nov 29, 2016 1:16 pm

Re: Cancer Survivors

Post by Laudiesdad69 » Fri Mar 03, 2017 6:39 am

CathyCate wrote:Laudiesdad
I am married to a cancer survivor and continue to be amazed by the courage he has shown in his battle with multiple myeloma diagnosed in 2012. He felt fine then, and anemia was his primary physician's only clue. We now have an expert medical team at Karmanos here in MI and the necessary and welcome support of family and friends. In short, help is available and this is not a time to be shy or reticent in seeking it out.

If you are not familiar with the Leukemia and Lymphoma Society here in the U.S., I suggest contacting them. Their assistance comes in many forms from basic information and seminars to financial help with meds and the like.

I sincerely hope that many and better days are coming soon for you!
CathyCate
Thank you. I was dating a woman who had multiple myeloma. That was about 20 years ago. She is still here, 20 years later. She had just finished treatment before I met her. She had a great attitude toward living. I run into her every now and then. She is very inspiring. Her faith was very important to her and her church family really seemed to pull her through. I wish you and your husband all the best, and many, many thanks for sharing your story.
Scott in Oregon

tcee
Posts: 54
Joined: Wed Feb 08, 2017 2:54 pm

Re: Cancer Survivors

Post by tcee » Fri Mar 03, 2017 7:54 am

Laudiesdad69 wrote:Basically, it doesn't matter how much knowledge you have, you are never prepared to have it happen to you. Cancer sucks, but if it weren't for cancer I wouldn't have my best friend wife that I now have. And I know that whatever happens, she will be with me. Thank you all.
That's the peculiar thing about cancer and probably many other conditions: even if they suck, by putting them in the right perspective they can be a great teacher. Wish you all the best!

Laudiesdad69
Posts: 911
Joined: Tue Nov 29, 2016 1:16 pm

Re: Cancer Survivors

Post by Laudiesdad69 » Fri Mar 03, 2017 9:03 am

Joe de V wrote:Hell Laudiesdad69...15+ years ago I was diagnosed with prostate cancer. I was already in my 70's and also a diabetic. The current protocol for prostate cancer uses the "Gleason Scale" in determining the severity - from 1 to 10 - of the cancer. The first test result made by my local Hospital Urologist and Cancer specialist called the sample a Gleason "6". I asked for a 2nd opinion and the sample was sent to the Stanford Medical Center in No. California.The results came back with a Gleason"8" reading. I wanted a 3rd opinion from my local VA Hospital They called a Gleason "7" reading.

What did I learn from this experience ? That there is value in asking for a 2nd opinion - in my case there were 3 opinions and they were all different -
My objective was not to prove wrong the first diagnosis but to find the severity of the case to decide the prefered most suitable treatment for my specific case. I met with the Medical Oncologist and jointly decided to treat it as a Gleason 8. Because of my diabetis and age at the time I received 38 Radiation treatments pinpointing the local spot of the cancer. I have annual check for my PSA and has remained well bellow 1 for the entire period to this date. The Oncologist MD later told me that my desire to participate in the decision for the treatment was an important factor in my positive outcome. He added that not very many patients suffering from cancer become active in deciding treatment - They leave it to the MD without much questioning and participation in their part. Be an Active Participant and ask as many questions as you need to know about the choices, if any, about the treatment for your condition. Be a Participant and you will feel more confident about "beating" the cancer. Best Wishes For success in treatment.
My grandfather had prostate cancer in his 50's. He had a radical prostatectomy. They had to give him lupron shots frequently starting about when he was in his 60's as his PSA rose. He took these every few months until he died, at age 87, from heart failure. 87 is a good run. I'd be happy with it. His name was Laudislaw but everybody called him Laudie. He was a witty jokester and a farmer and diesel mechanic. I named my son after him.

Scott

CathyCate
Posts: 504
Joined: Mon Jun 01, 2015 2:25 am
Location: Metro Detroit, Michigan

Re: Cancer Survivors

Post by CathyCate » Fri Mar 03, 2017 2:45 pm

Thanks, Scott
Keep us posted on your progress. Glad to hear your wife is on your team.
You will get through this and be able to do more of the things you enjoy doing again!
Cathy Cate

Joe de V
Posts: 1853
Joined: Mon Nov 05, 2007 12:34 am
Location: Northern California USA

Re: Cancer Survivors

Post by Joe de V » Sat Mar 04, 2017 12:55 am

Laudiesdad69 wrote:
Joe de V wrote:Hello Laudiesdad69...15+ years ago I was diagnosed with prostate cancer. I was already in my 70's and also a diabetic. The current protocol for prostate cancer uses the "Gleason Scale" in determining the severity - from 1 to 10 - of the cancer. The first test result made by my local Hospital Urologist and Cancer specialist called the sample a Gleason "6". I asked for a 2nd opinion and the sample was sent to the Stanford Medical Center in No. California.The results came back with a Gleason"8" reading. I wanted a 3rd opinion from my local VA Hospital They called a Gleason "7" reading.

What did I learn from this experience ? That there is value in asking for a 2nd opinion - in my case there were 3 opinions and they were all different -
My objective was not to prove wrong the first diagnosis but to find the severity of the case to decide the prefered most suitable treatment for my specific case. I met with the Medical Oncologist and jointly decided to treat it as a Gleason 8. Because of my diabetis and age at the time I received 38 Radiation treatments pinpointing the local spot of the cancer. I have annual check for my PSA and has remained well bellow 1 for the entire period to this date. The Oncologist MD later told me that my desire to participate in the decision for the treatment was an important factor in my positive outcome. He added that not very many patients suffering from cancer become active in deciding treatment - They leave it to the MD without much questioning and participation in their part. Be an Active Participant and ask as many questions as you need to know about the choices, if any, about the treatment for your condition. Be a Participant and you will feel more confident about "beating" the cancer. Best Wishes For success in treatment.
My grandfather had prostate cancer in his 50's. He had a radical prostatectomy. They had to give him lupron shots frequently starting about when he was in his 60's as his PSA rose. He took these every few months until he died, at age 87, from heart failure. 87 is a good run. I'd be happy with it. His name was Laudislaw but everybody called him Laudie. He was a witty jokester and a farmer and diesel mechanic. I named my son after him.

Scott
Thank you Scott for your input on the various method to fight cancer. My oncologist told me that every male world wide regardless of their ethnicity have a possibility to get prostate cancer, and they can survive with it with proper care. This is one cancer that medical science have been able to "manage" if discover and treated in time. I n my case no surgery was recommended due to my diabetic condition and age. Two of my older senior friends have the surgery and they have a bit of a problem with sudden urine leakage - no prior warning - to the point that the need to wear special under garments when they go out of the house.
My Doctor told me after the radiation that Yes, the cancer is there but it was radiated to "death". I will died with the Cancer but Not From It.
That is one statement that I hope holds true for Me.
Last edited by Joe de V on Sun Mar 05, 2017 11:28 pm, edited 1 time in total.

MessyTendon
Posts: 1209
Joined: Fri Jun 19, 2015 1:33 am

Re: Cancer Survivors

Post by MessyTendon » Sat Mar 04, 2017 10:15 pm

Go see a traditional chinese medicine doctor who is versed in western medicine also. They can treat the spleen with herbs. Get many medical opinions before seeking treatment. If you aren't sure yet there is time to make a rational decision, not based on fear.

One specialist might see something the other does not. Do whatever you feel is right, but get as many opinions as you can then make a decision based your gut.

Return to “The Café”

Who is online

Users browsing this forum: CommonCrawl [Bot], Lawler and 5 guests