Reply
Esteemed Social Butterfly

Any Stage 4 Cancer survivors, out there????

Not asking for myself although I feel my sanity is taking a hit about now. I know my teeth sure are, courtesy of the lockjaw and teeth grinding going on.

 

I've done the google and bing search, and I've asked the doctors/pathologists/etc that I know personally but, now need more input from survivors. DX - Bone marrow cancer.

 

OK, now for the questions.

 

How did you find the treatment centers? 


What centers/hospitals are better for the FLorida region?

 

Really better vs. good rating.

 

Thanks

Froze

 

 

 

 

 

 

 

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
5,283 Views
16
Report
Regular Contributor

I was diagnosed in 1990 with Prostate Cancer. After considering all options went with a Radical Prostatectomy at Stanford. I am now 84 and  a Prostate Cancer Survivor.

Then----In 2007 routine TBC showed a Igm 0f 3,500 idicating possible Blood Cancer. Further testing showed a rare form of Non Hodgkins Lymphoma called Waldenstrom's. Early infusions for a couple of months of Rituxan brought that Igm down continually. to 1,000 plus. 18 months ago my Oncologist arranged for me to receive the very expensive new drug IMBRUVICA free of charge and my most recent Igm reading is 525. And Then   in 2016 I was diagnosed with another AUTO IMMUNE DISEASE Rheumatoid Arthritis. Neither of the diseases ate curable but are treatable.

Now here I am as a 84 year old Cancer Survivor living with minimal assistance in a First Class Assisted Living Facility trying and succeding life as best I can with my walker and periodic aches & pains.

Lon
0 Kudos
2,473 Views
0
Report
Newbie

I am a 3 time survivor of non Hodgkins lymphoma. I found the Leukemia & Lymphoma Society to be a great resource. I've only recently joined AARP and just saw your post. My first diagnosis was Stage IV. Also check with the American Cancer Society. I wish you well.
0 Kudos
6,427 Views
0
Report
Trusted Contributor

After being diagnosed with uterine cancer 2 1/2 years ago I found a group on facebook for uterine cancer. These ladies are an inspiration, and a wealth of info. They talk about their treatments, and what helps them to get through their treatments. I was stage 1 grade 1, and thankfully did not need chemo, or radiation. Whatever cancer your friend has there's probably a Facebook page for it. 

0 Kudos
7,661 Views
1
Report
Gold Conversationalist

I've had bouts with serious illnesses over the years.  3 rounds with bladder cancer, prostate cancer, quintuple by-pass, etc.  I always get at least two opinions on treatment and options.  For the by-pass surgery I got 3 opinions.  You must be your own advocate.  Just accepting what one doctor suggests is not good.  A surgeon wants to cut.  A stent guy wants to do stents.  A med guy wants to give prescriptions. So you need to cover the options.  Specific types of cancer need a specialist in that type.  Sloan Kettering was our choice for my bladder and prostate and my wife's breast cancer.  So far so good.

0 Kudos
7,447 Views
0
Report
Esteemed Social Butterfly

I've just been experiencing my first round of panic attacks (I'm hoping beats the alternatives) for the first time since 2002 and losing my sister to brain cancer.

Has anybody done the Formula One tests. It looks or at least sounds like it would/could allow more people to be working for good.

But, geez the length of time to get results from injecting different cancer therapies into cells is a pita, and waiting for results to come up with a therapy that will work.

Who boy, I'm trying to filter my brain but, the cusses flowing through my mind.

Froze
And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
7,693 Views
0
Report
Esteemed Social Butterfly

Finally found the inspire.com website , too many search engines and too many results, looks good

And an oh, frak add a number 2 friend to the list of teeth gnashing. My shoulders are fine but, my jaws are starting to ache.

Froze

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
8,275 Views
2
Report
Esteemed Social Butterfly

Never rains but, it pours,
Inspire sight is good but, doesn't cover bone marrow cancer, at least hasn't spread to organs.

 

And now blessed with a another friend of 50 years being cursed. 

Amazing how many expletives are floating around my mind right now, and that one is a vegan/runner/health nut.

Yes, it doess seem to hit any one despite what they may do to prevent it.

 

I need a nap hoping for a rem stage for first itme in a week, teeth in mega grinding and shoulders are crushed.

 

Frozen

 

 

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
7,769 Views
1
Report
Recognized Social Butterfly

So sorry to hear of the double tragedy.  Try to stay well Froze in spite of these troubles.

0 Kudos
7,760 Views
0
Report
Esteemed Social Butterfly

My friend used to be my in law, now my outlaw guess that's a ongoing family gag.

At this point I'm just watching her decline from being a royal pita (good thing) to someone weakened and facing their own mortality.

Don't know if she's receiving the best of care in FL , so finally found a second opinion in Tampa for her to go to. I'm missing the stubborn pig headed Portuguese outlaw. Fair warning if you don't know my humor, she's been as warped or dry as me. One part Jackie Leonard, 2 parts Woody Allen and a smidge of Don Rickles.

I need to find some bone marrow survivors l, or a site to offer hope. I tried to find Ralph's inspire site but, need an exact web site address.

She went from a Stage 1c to a 4 after chemo, and I'm still having a time wrapping my head around that. Breast cancer metastasized to the bone marrow.

I've had family member survivors in my immediate family dating back to the 50's.
But, I've had the crippling loss of my sister (fellow PITA) to breast cancer metastasized to her brain and death.

After the first 10 blood relations are hit by cancer, both sides of the family - no problem with my shoulders accepting an outlaw into trying to get better treatment, or understand more. My sister was the only loss, every one else survived but, went to Boston for treatment @ the Dana Farber and Deaconess Hospital. 

That's probably enough for now - I miss the PITA, **my sister** My outlaw still lives and After 30+ years, I've gotten used to her and she understands what my humor is and we don't have to apologize for every unfiltered comment that comes from either of our mouths.


Froze

edited for clarity - spell check on iphone drives me up the wall.

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
8,281 Views
0
Report
Esteemed Social Butterfly

I'd think the longer you're above ground the more you'd be considered a survivor.

I have a neighbor who was diagnosed in 2001 and just turned 82. He's one tough old Marine and still refuses to give an inch.
About all he hated was the shrinkage some places and the crying elsewhere for his side effects from one of the Lupron like side effects.
Froze
And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
7,342 Views
1
Report
Recognized Social Butterfly

I have a friend with stage 4 colon cancer, age 56.  No more chemo being given as it has not been helping.  He is still active and enjoying life, traveling and going to parties. Feels better without the chemo. He was  diagnosed with stage 4 three years ago.  

 

Frozen I do wish your friend well, I hate that you are hurting.   

0 Kudos
8,318 Views
0
Report
Periodic Contributor

I am not a survivor. I was diagnosed Oct 28, 2014 with psa=279. I am taking Lupron every 3 months. I also have Zometa IV every month for the last 6 month. So far I am still alive. my psa goes up to469, then drop to 22.6 and last psa test on June 1, 2015 is 18.3. If I was not diagnosed of prostate cancer stae 4, I will never know I have prostate cancer. The lupron infection and zometa iv treatment give me some bad side effect, like chilling and flu like symtom for 2 or 3 days.  Now the side

effect is gone. But I might get it any time. I research the internet statistics for stage 3 survivors. I

read that on average, people 80 yrs old or older with stage 4 prostate cancer live between 3 to 4 years. Realistically, I may live 2 more years, that's my guess. I am not stressed out. For last 18 yrs, I go bowling in the senior league 3 days a week and I go to the YMCA gym 3 days a week. So far

I am at peace with myself. I am very grateful to GOD that He allow me to live this long and enjoy

my retirement years. I retired 18 yrs ago and now I am still alive.Many people are secretive about their ailment. I am not. Infact I told all my friends to ask their doctors to give the a psa test.

I hope I give some answer you want to know.

Contributor

Try the Inspire web site,has some good information.I have 2 primary cancers.Lung cancer stage 3b and breast stage 2. My brother is stage 4 bladder cancer alive 9 years.I'm just finished my treatment in feb. and feel fine.Keep a postive attitude,it can be done.

Esteemed Social Butterfly

Hi Ralph, 

 

Which inspire website?

And any chance you've taken "Red Devil" for chemo, Xenodyl was an allergy problem.

If the cancer doesn't kill, seems like chemo med's do, or just make a person feel like they are.

 

Thanks,

Froze

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!
0 Kudos
5,249 Views
0
Report
Honored Social Butterfly

I don't know anything, but just wanted to say how sorry I am for you, having to deal with this even on someone else's behalf!


Registered on Online Community since 2007!
0 Kudos
5,275 Views
1
Report
Esteemed Social Butterfly

Astraea,

   Both of my shoulders have beeen fixed so, I don't mind trying to help an outlaw. The hard part is walking away (at least for me) and saying it's been fun, now adieu. 

 

    Froze

 

And yes, after long days/nights, I'd still like to swing these hunks of glass , plastic and silicon against the nearest wall Come on retirement!