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Diagnosis not good

mikeev
Posts: 19
Joined: Jun 2012

Have just seen my specialist, my tongue cancer is back but also lung cancer that is non-curable , have been told I could survive for 9  to 12 months, have to undergo 6 courses of chemo cisplatin and 5 FU, has any body had this and what is it like 

thanks

mike

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Sorry for your Dx..., stay positive and as long as you are alive, miracles are possible...

I had both Cisplatin and 5FU during my Tonsils cancer Tx... Cisplatin can be hard on you so make sure theat you let them know anything going on out of the norm.. Things like hearing loss, neuropathy, kidney damage, etc...

I didn't really have anything going on as for 5FU. It was administered through a pump and port. They would put the pump in a fanny pack pn Monday, and it would continuously pump every 30 seconds or so until it ran out Thursday night...

Stay very, very hydrated and flush the drugs out...

Prayers,

John

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

I don't know much about the chemo side of this, but wanted to let you know that you will be in my prayers. I hope that things go well for you.

Jamie

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Mike, it is always so hard to hear/read a dx such as yours.  please don't give up, like john said, miracles still happen.  you will be in my prayers.  please keep us posted.

God bless you, Mike.

dj

hwt's picture
hwt
Posts: 2002
Joined: Jun 2012

My 2nd dx was not good either. Hope was pretty much taken away when they discovered a tumor around my carotid, I ended up at Mayo, had 5 days of SBRT and that tumor is now gone. Unfortunately, another has appeared on the other side but I have hope back. Mike (luv4lacrosse) had mets to lung and has been doing well with a clinical trial. You may want to see if you can contact him via chat or find some of his posts. I always share the story of my cousin who had mets melanoma to lung and liver, he did a clinical trial and has been clean more than 8 years now. Then my brother was told he had kidney cancer that was mets to lung making it stage 4. He went to Mayo where they asked for biopsy. When he said there was none for lung, they did the biopsy to find out he had two primaries both stage 1. He was treated and has been cancer free 3 years+. Keep searching for your options and hold hope.

Candi

jim and i's picture
jim and i
Posts: 1676
Joined: May 2011

Mike, Jim was given less than a year one and a half years ago. His BOT cancer had spread to both lungs. The cisplatin they gave him during original treatment damaged his kidneys so they had to stop it. They offered erbitux but he chose quality of life rather than quantity. He was 77 at the time. Choosing to fight or not is a personal decision. I have seen people suffer treatment only because family wanted them to and I have seen others fight because they wanted to and beat the beast. Only you can choose. I believe in miracles and I pray that you recieve one.

Debbie

Ladylacy
Posts: 514
Joined: Apr 2012

So sorry to hear the news but please remember doctors don't know how long we have.  Only the man upstairs does.  My husband was told this time last year that his cancer had reoccurred and spread to his lung.  Only thing offered was chemo and he declined.  He is still here today without further chemo.  So my feelings are that no one knows but the man upstairs.  Just don't give up hope.

Sharon

katenorwood
Posts: 1860
Joined: May 2012

First and foremost if your still in fight mode.....put the gloves back on.  There are a few here on site doing trials.  I don't have any experience with chemo.  but it sounds like you're getting good advice above.  I think it was good advice to pm others listed like (luv4lacrosse) as he has been amazing in his determination and strenghth.   Sending positives and prayers your direction.  Katie

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I am sorry to hear this but please don’t give-up hope, When my NPC came back a 3rd time I was giving 6 to 12 months. That was in 2006, I am still here; I have a lot of problems but still alive and still working full time and still able to see the blessing of all my grandchildren.

Click on Hondo and you can read my post.

 

Will keep you in prayer

Hondo  

MarineE5
Posts: 762
Joined: Dec 2005

When I read your post, my brain froze/stalled and wasn't sure as to what to say. Like others above mentioned, not all Doctors know what lies ahead for any of us. They can give an opinion of what they have seen in the past.

Like mentioned also, is the time frame, we have a lady friend that was told to get all her things in order as she had less then 2 years to live. That was over 8 years ago and she is still going strong...

My Best to You and Everyone Here

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

Mike..sorry to read your DX...but fight the good fight , good things happen every day. Like Skiffin  I had both the Cisplatin & 5FU , along with Toxatore for Stage 4A RT Tonsil C, ...after the first tx , I ended up with low white cell count so spent 2 1/2 days in hospital, even with a nuelasta injection..after that all ok...I wore the 5FU  in a fanny pack thing, all plugged into a chest port from a mon-fri after each infusion ( every 21 days), the worst thing about it was trying to sleep, drive a car..cause it was akward..and the worst for me was not being able to shower or take a bath.

Linda

josh r.
Posts: 209
Joined: Oct 2010

Hi Mike,

Like so many of your other teamates here my shoulders slumped when I read your post, and then I thought about so many here who were given little chance and are still putting out positive vibes and I fall into that group as well, that ever growing club of brothers and sisters. In July I was given about 10% chance of seeing Christmas. On July 28th I started chemo and radiation that lasted until November 22nd. It wasn't fun but I truly believed in what "my team" was doing and I trusted in "my God" as I do today. Mike, that was 1991! Will you make it? I don't know, but I do know you have a whole lot of love and prayers aimed your way. Don't give up unless you want to and we love and understand you whichever road you choose. One of your many teamates, josh r.

phrannie51's picture
phrannie51
Posts: 3847
Joined: Mar 2012

on here in trials for recurrance to the lungs....one is another Mike (luv4lacrosse)....he's been in a trial for quite some time.  I don't know if he got Cisplatin, but I do know he was doing the 5FU along with another chemo drug.  Your Oncologist is someone to ask about trials....

I had Cisplatin and 5FU (in the fanny pack) after rads.....I was never much bothered by the Cisplatin (a few days of feeling icky, then back to normal).....the only problem I had with 5FU was in my mouth.....it caused mouth sores.  I was getting 3 big doses every 3 weeks, tho....and we don't know how they are planning out your 6 treatments.

Just hang in there, and call bullsh*t on the 9 to 12 month thing.....there are many Drs. out there who won't even give a time frame because they know that they don't know.

p  

donfoo's picture
donfoo
Posts: 1323
Joined: Dec 2012

All of us, whether we admit it or not, think about it, consciously or not, stoic or not,  - fear that cancer might recur. I am truly sorry to hear it has returned. I had TPF (Taxotere, Cisplatin, and 5FU), 3 rounds at 3 week, just over two months. It was very tough, I barely made it through the 3rd cycle. It knocked me down so hard I was unable to get out of bed for 8 days. Each time it took at least two weeks to feel somewhat decent, just in time to get hit again. Overall, this was about 3 months before I recovered sufficiently to start the next treatment series: chemo/rads.

If it were me given this news, I would fight certainly based on my current physical and mental heath. Each person is unique and finds a new normal from their earlier round(s) of treatment. Some are as good as new, some are more compromised than others and others suffer conditions creating more serious QOL issues. It is far easier to say just do it to someone whom you hardly know and their own state.

To me, QOL would be the primary concern if faced with a terminal diagnosis. You will always be on pallative treatments designed to prolong your life, not cure your disease. Each person has to make their own decision based on their own condition and outlook. Personally, I would be asking myself a few things. One, do several doctors (second,third opinions) support the prognosis. If in fact, there is consensus that less than a year is the general expectation, then I would, based on my own past experience with systemic chemo treatment, do the math, 22 weeks (3 rounds x 6 cycles + 4 weeks of end recovery). Given 52 weeks, that is nearly half of my expected remaining life feeling like dog ****, QOL near zero. Allowing for natural and expected gradual decline robs some of that remaining 26 weeks. What remains in QOL is disheartening.

Again, for me, I have no idea what sort of mental process or coures of actions follow before deciding what to do. Maybe there are trials or evcen more experimental therapies. They might work, they may compromise your heath more rapidly, who knows for sure? I am certain there are no clear paths forward and only you can find the light to determine what is right for you. This is the most difficult decision one will ever make but whatever decision you make is the right one for you.

God bless you and may you only find comfort in your decision.

Don

 

mikeev
Posts: 19
Joined: Jun 2012

Im going to have Chemo for 4 days every 3 weeks, had Cisplatin  first time round was ok for first onebut sick with second and third course but not had 5fu before

regards

 

Mike

 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

Mike,

Sorry about your report, but give it all you can!

Matt

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Mike,

There is always a chance for a change to occur. If you could connect with Mike (luv4lacross) he has been through a very similar problem and is doing well. Don't lose hope. Keep smiling.....Only God has the last word here.

God Bless,

~C

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