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Started By
Message
Seeking cancer options for a friend of mine (Updated Pg. 4)
Posted on 10/26/21 at 2:40 pm
Posted on 10/26/21 at 2:40 pm
A very good friend of mine, who is in his early 40s, is going through his 2nd battle with cancer. He's asked me to be part of his support group and I want to help him as much as I can so he can make the best decision for himself.
- Testicular cancer in 2012; Non-seminoma
- Treated with BEP chemo regimen
- 5 years later, the oncologist said don’t come back, "you’re fine."
Fast forward to 3 weeks ago:
- Excruciating pain in the back of left leg (hamstring); admitted to hospital.
- 11 days in the hospital to help get the pain under control.
- Discovered blood clots in both lungs.
- MRI, Cat Scan, Biopsy, bone scan, chest and leg x-ray.
- Discovered lesions skull (jaw), ribs, clavicle bone, and spine.
- New oncologist does not know where new cancer is originating from.
- Biopsy has been sent off Mayo Clinic, waiting for results.
- Previous oncologist does not believe it is a relapse of testicular cancer.
- New oncologist said it could be testicular or kidney cancer.
- New oncologist said what he has is not curable and told him his life expectancy is 1 year or less - the doctor did say this is in "pencil" because he doesn't know where this is orginating from.
His follow-up appointment isn't until this Friday. However, he does know this much off of a report that he saw (and snapped a picture of):
- Widespread osseous metastases throughout the axial and appendicular skeleton.
He's obviously going to follow his medical doctor's advice, but I'd like to arm him with as much information as I can so he can be informed to see what options are out there --- and any new treatments, etc. are available.
I do know he is considering MD Anderson in Houston, which I have heard is a great place to be if one should have cancer.
The little that I know about this disease led me to think that he may have Multiple Myeloma.
As you can imagine, he is afraid and in shock. He has two children, both of whom do not know his condition at this time.
- Testicular cancer in 2012; Non-seminoma
- Treated with BEP chemo regimen
- 5 years later, the oncologist said don’t come back, "you’re fine."
Fast forward to 3 weeks ago:
- Excruciating pain in the back of left leg (hamstring); admitted to hospital.
- 11 days in the hospital to help get the pain under control.
- Discovered blood clots in both lungs.
- MRI, Cat Scan, Biopsy, bone scan, chest and leg x-ray.
- Discovered lesions skull (jaw), ribs, clavicle bone, and spine.
- New oncologist does not know where new cancer is originating from.
- Biopsy has been sent off Mayo Clinic, waiting for results.
- Previous oncologist does not believe it is a relapse of testicular cancer.
- New oncologist said it could be testicular or kidney cancer.
- New oncologist said what he has is not curable and told him his life expectancy is 1 year or less - the doctor did say this is in "pencil" because he doesn't know where this is orginating from.
His follow-up appointment isn't until this Friday. However, he does know this much off of a report that he saw (and snapped a picture of):
- Widespread osseous metastases throughout the axial and appendicular skeleton.
He's obviously going to follow his medical doctor's advice, but I'd like to arm him with as much information as I can so he can be informed to see what options are out there --- and any new treatments, etc. are available.
I do know he is considering MD Anderson in Houston, which I have heard is a great place to be if one should have cancer.
The little that I know about this disease led me to think that he may have Multiple Myeloma.
As you can imagine, he is afraid and in shock. He has two children, both of whom do not know his condition at this time.
This post was edited on 12/26/21 at 1:30 am
29
Posted on 10/26/21 at 2:43 pm to Will Cover
Reading this scares the shite out of me. Prayers for your friend.
Posted on 10/26/21 at 2:44 pm to Will Cover
quote:
New oncologist said what he has is not curable and told him his life expectancy is 1 year or less.
Uh they said that without even knowing the definitive histology?
Also Occams Razor says its recurrent testicular cancer since that is what he already had
Posted on 10/26/21 at 2:46 pm to Cosmo
quote:
Uh they said that without even knowing the definitive histology?
Yes.
I don't know the "why" behind why the doctor said that.
Posted on 10/26/21 at 2:51 pm to Will Cover
I'm basically going through the same thing - had testicular cancer, went through the surgery and chemo. Was told I was in partial remission but 3 months later on a pet scan the shite is spreading all over my body. Going tomorrow to a specialist at Tulane Med Ctr who will be going over every single test and procedure I've had in the last two years. I should know what my next steps are in a couple of days - getting hit with this is like having a cinder block dropped on your chest. It's unbelievable.
Prayers for your friend and his family. I'm there with him.
Prayers for your friend and his family. I'm there with him.
Posted on 10/26/21 at 2:52 pm to tankyank13
i'm 35 and lost my best friend to cancer in 2020.
just be there for him is all i can say. he's scared and the unknown is the fricking worst. try and keep his mind on other things when you're with him.
so sorry you and he have to go through this it won't be easy on anyone.
just be there for him is all i can say. he's scared and the unknown is the fricking worst. try and keep his mind on other things when you're with him.
so sorry you and he have to go through this it won't be easy on anyone.
This post was edited on 10/26/21 at 2:53 pm
Posted on 10/26/21 at 2:53 pm to Horsemeat
quote:
I'm basically going through the same thing - had testicular cancer, went through the surgery and chemo. Was told I was in partial remission but 3 months later on a pet scan the shite is spreading all over my body. Going tomorrow to a specialist at Tulane Med Ctr who will be going over every single test and procedure I've had in the last two years. I should know what my next steps are in a couple of days - getting hit with this is like having a cinder block dropped on your chest. It's unbelievable.
Prayers for your friend and his family. I'm there with him.
Prayers to you. If you don't mind, would you be willing to share your findings after you speak with a specialist at Tulane?
Posted on 10/26/21 at 2:54 pm to Will Cover
Dana Farber Cancer Institute in Boston has a team of providers that specialize in Multiple Myleoma. Their website is full of useful information. Unfortunately Boston is pretty far away, but they do have multiple studies and trials. If he can make it up to Boston I would highly recommend them
This post was edited on 10/26/21 at 2:56 pm
Posted on 10/26/21 at 2:54 pm to Cosmo
From afar & only going by what you list here as areas of concern, the bone & spine areas alone make this a very tough diagnosis. The bone in particular. But as for any anticipated life expectancy, we are all very individualistic & this figure is only an average. We all respond differently to different types of treatment, for better or worse. What you can offer him is to continue to be very optimistic, encourage his family as well as they will need support themselves. There will be dark periods, no doubt. Just make sure there are positive ones as well. Be positive each & every time you are with him.
Posted on 10/26/21 at 2:57 pm to Keltic Tiger
frick cancer
Posted on 10/26/21 at 2:57 pm to Will Cover
Serious answer, tell him to research that dude who took dog dewormer and beat stage 4 terminal lung cancer.
LINK
LINK
Posted on 10/26/21 at 2:59 pm to Will Cover
quote:
I do know he is considering MD Anderson in Houston, which I have heard is a great place to be if one should have cancer.
I was going to recommend MD Anderson. My mom has been battling cancer for a few years and is actually in the MD Anderson hospital this week doing her (hopefully) final surgery to remove the final tumors. The dr’s there are the best in the world and have been so helpful with my mother.
They made some recommendations that were different than other cancer dr’s she saw and it saved her life. Can not recommend them enough
Posted on 10/26/21 at 3:01 pm to OldmanBeasley
quote:
Dana Farber Cancer Institute in Boston has a team of providers that specialize in Multiple Myleoma.
I may be completely wrong on "my" diagnosis of Multiple Myleoma. I only think this because of the symptoms of Multiple Myeloma (he has quite of few of this type of cancer's symptoms). But by no means am I a medical expert or consultant.
Truly could be kidney or testicular. Don't know, yet.
Thank you for the information.
Posted on 10/26/21 at 3:01 pm to The Levee
There is a fruit that is supposed to very good in the fight against cancer. It's called guana bana it grows in the deep south and can be bought down south texas and some mexican grocery stores. google it get some try it its a f###in fruit what could it hurt I know if I get diagnosed I am going to corpus for a while live on them and see what happens.
Posted on 10/26/21 at 3:02 pm to Will Cover
quote:
Prayers to you. If you don't mind, would you be willing to share your findings after you speak with a specialist at Tulane?
Sure, but it's nothing compared to his - mine is spreading through my lymph nodes towards my brain, it's in my abdomen and chest. By the end of next week i should either be in chemo or on the chopping block at ochsner.
This post was edited on 10/26/21 at 3:15 pm
Posted on 10/26/21 at 3:03 pm to Pisgah Pete
quote:
Serious answer, tell him to research that dude who took dog dewormer and beat stage 4 terminal lung cancer.
He spoke with someone who had the same type of symptoms he has, and they mentioned this dog dewormer. They were told less than 1 year to live and they are still here today, 5 years later. They also went to Mexico and apparently there is a treatment that is practiced in Mexico to "starve" the cancer.
Posted on 10/26/21 at 3:04 pm to Captain Ray
quote:
There is a fruit that is supposed to very good in the fight against cancer. It's called guana bana it grows in the deep south and can be bought down south texas and some mexican grocery stores. google it get some try it its a f###in fruit what could it hurt I know if I get diagnosed I am going to corpus for a while live on them and see what happens.
We are in Rockport, Texas. I'll check this out.
Posted on 10/26/21 at 3:07 pm to Will Cover
I’ve(55 yrs ) got prostate cancer about to start my battle. It’s always on my mind even though I tell my family I’m fine… it’s always there.
Posted on 10/26/21 at 3:12 pm to Will Cover
quote:
I may be completely wrong on "my" diagnosis of Multiple Myleoma. I only think this because of the symptoms of Multiple Myeloma (he has quite of few of this type of cancer's symptoms). But by no means am I a medical expert or consultant.
Truly could be kidney or testicular. Don't know, yet.
Thank you for the information.
Regardless of his specific diagnosis, Dana Farber has specialist in most cancers and are involved in a lot of cutting edge research and treatment. Their website is a great resource and if he’s willing to travel, I highly recommend getting a second opinion there
Posted on 10/26/21 at 3:14 pm to OldmanBeasley
quote:
Dana Farber Cancer Institute in Boston has a team of providers that specialize in Multiple Myleoma. Their website is full of useful information. Unfortunately Boston is pretty far away, but they do have multiple studies and trials. If he can make it up to Boston I would highly recommend them
Farber is great. UAMS in Little Rock is one of the worlds best at multiple myeloma. I believe that Sam Walton had myleoma and I am sure lots of money was poured into their center because of that.
MD Anderson in Houston, Sloan Kettering in NY, Mayo in Rochester, Fred Hutch in Seattle, Farber in Boston - those are some of the big centers that are equipped with tons of data from all sorts of cancers. They've likely seen it all - so going there makes it more likely that they will have some level of experience with it and they are more likely to have clinical trials available to participate in.
My wife died in her early 30s due to gray zone lymphoma - some weird combination of Hodgkins and non-Hodgkins. The experts in GZ Lymphoma? NIH in Bethesda. So being the biggest and most well versed doesn't always mean they have seen it - it's just more likely. I will say that MDA is very cold feeling - they mean business there. It's well run. Extremely professional. Just not as comforting as local centers will likely be. The local docs could always consult with the bigger centers as well for the most up to date treatment options. Unfortunately, I think you have to travel there if taking part in a trial. The hard part is waiting to find out what they are dealing with. The uncertainty in cancer sucks arse.
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