Stage 1V Pancreatic Cancer

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RE: Stage 1V Pancreatic Cancer

by Carien on Tue Aug 26, 2014 10:26 AM

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ack I mean my diagnosis in February of 2013 !! not 2014

RE: Stage 1V Pancreatic Cancer

by Hussy on Tue Aug 26, 2014 01:20 PM

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I know you are worried about how your husband will be when the chemo starts.  For what it's worth, my husband did Fulfirinox which everybody said can be totally brutal, so we were prepared for the worst.  To our suprise, his side effects were very manageable -- just fatigue and some transient neuropathy in his fingertips.  Virtually no nausea or diarrhea.  So you never know. 

I can relate to what you're saying about Tom thinking everything will work out and you not feeling that way.  My husband's outlook is pretty Tom-like in this respect whereas I feel more the way you do.  I just try to respect his wishes -- if this is the way he needs to deal with this disease, then I must accept it.  One of the reasons I come to sites like Cancer Compass is because I know I can be honest about my fears and worries without burdening my husband.

RE: Stage 1V Pancreatic Cancer

by lestom on Tue Aug 26, 2014 02:10 PM

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On Aug 26, 2014 10:25 AM Carien wrote:

On Aug 25, 2014 5:53 PM lestom wrote:

I have been married to To for forty two years and we were told that Tom 66yrs has Pancreatic Cancer, it is stage 1V, the prognosis is six months.

We are both devasted, I want to know all I can on the subject, but my husbans does not, he thinks all will be alright, I know better though.

Hi Lestom,

I was given a grim prognosis too, back in Feb of 2014. Could not digest food anymore, could hardly walk, always in pain. 
But you never know how things can turn out. I was started on Folfirinox, even though I was considered probably too weak to endure it, but it enabled me to start eating again bit by bit because the tumor let go of my stomach thanks to the poison of the chemo. I do lots of complementary things, eat extremely healthy, had radiation therapies on pancreas and livermetastase,  and except for low white and red bloodcells I am ok at the moment. (I do still have the tumor on my pancreas but that seems dormant.....)
When first diagnosed I thought I could never travel again, but in the last year I have made a few beautiful trips to the mountains etc. I am even in the process of starting to teach again, and starting a campaign for my dr (a surgeon for PC) who does research in immunotherapy for PC.

You never know how things may turn out.
I would say if you and your husband feel like working on trying to heal as much as possible, go for it and do not give up hope.
If you do: find the best doctor you can, on a good (university) hospital with a lot of experience in pancreatic cancer.

I wish you all the strength and positivity you need for this path, and if you decide not to go for it but to let things take it natural course, I wish you and your husband peace of mind.

Carien

PS I am well aware of how fast it can go, my father died 3 months after his diagnosis of phase IV PC, and to make it worse, he died only 3 weeks before I got my diagnosis. 

Thank you for your reply Carien, so pleased about your health improving.

We were given imformation about Folfirinox, and how it would be so strong and maybe to much for Tom to take, the Consultant mentioned the mix of Gemar/Abraxane, so we thought that may be the way to go.

I have been doing some research and I'am confused on which one would be the best to go for.

We have to go to the Oncology Clinic at Clatterbridge Hospital tomorrow to finalize the treatment and blood tests.

RE: Stage 1V Pancreatic Cancer

by lestom on Tue Aug 26, 2014 02:16 PM

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On Aug 26, 2014 1:20 PM Hussy wrote:

I know you are worried about how your husband will be when the chemo starts.  For what it's worth, my husband did Fulfirinox which everybody said can be totally brutal, so we were prepared for the worst.  To our suprise, his side effects were very manageable -- just fatigue and some transient neuropathy in his fingertips.  Virtually no nausea or diarrhea.  So you never know. 

I can relate to what you're saying about Tom thinking everything will work out and you not feeling that way.  My husband's outlook is pretty Tom-like in this respect whereas I feel more the way you do.  I just try to respect his wishes -- if this is the way he needs to deal with this disease, then I must accept it.  One of the reasons I come to sites like Cancer Compass is because I know I can be honest about my fears and worries without burdening my husband.

That is just how I feel Hussy, talking to like minded people helps me tell the truth.

When my husband talks to me I cannot bring myself to argue the point with him, I don't want to burst his bubble.

RE: Stage 1V Pancreatic Cancer

by bobss396 on Tue Aug 26, 2014 04:13 PM

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On Aug 25, 2014 8:07 PM lestom wrote:

On Aug 25, 2014 7:29 PM bobss396 wrote:

On Aug 25, 2014 6:52 PM Octoberglory wrote:

I feel your pain--our 45th wedding anniversary is next February--my husband was able to have the Whipple on 7/30 but remains in hospital since except for 4 days home. We were told it was stage 2with lymph node metastasis but looking online appears to be more like 3. We were just on the verge of retiring to our dream home close to the Delaware shore--savor every moment and fight like crazy!

Barbara and I were on track to retire at age 62 in 2017. Married 13 days shy of 31 years... we was robbed. She did fight the fight but lost.

I don't know what to do any more and I'll push my retirement out a few years. Next year I can collect her SS, so that's something at least.

I need to know all about my enemy PC.

Like you, I could visualise my husband and me holding hands and walking into the sunset.

I know we don't have much time together, he has yet to have Chemo and he is just tired all the time, I wonder what he will be like when he does start.

My problem is Tom thinks everything will turn out well, when I know it won't.

I should have read up more on PC, hindsight is always 20-20 though and would it have changed the outcome and maybe prolonged Barbara's suffering?

Yeah, we were close, talking about retiring somewhere warm even when we both knew she was sick. I had really thought she was going to be in that 20% that made it to 5 years.

Maybe you have to just go what what Tom believes in. There is a lot of power in positive thinking.

RE: Stage 1V Pancreatic Cancer

by TheFollower on Fri Aug 29, 2014 06:49 PM

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You may look into the Clinical Trials for the pancreas and what the qualifications are.

I am only familiar with one, but I'm not an expert.

https://clinicaltrials.gov/ct2/results?term=dcvax-direct&

There is more info on the government website.

I hope that & pray that your efforts are successful.

RE: Stage 1V Pancreatic Cancer

by huskerchick on Fri Aug 29, 2014 07:25 PM

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My husband was diagnosed Stage IV PC in April of 2013.  He had Whipple surgery, but the doctor was unable to complete it as the tumor was too close to a main artery, so he had to close him up leaving the tumor in there.  The cancer had also metastisized to his lungs. He started chemo in July (to give the surgery wound a little time to heal) and was on Gemzar.  The first scan after 3 months showed no growth, but no shrinkage either, so he went on Gemzar/Abraxane for the next 6 months.  Did the scan and there was no sign of cancer!  Remission! 

Now, here we are in August, and the cancer has reared its ugly head again with more nodes in the lungs, so we are back on the Gemzar/Abraxane.  The oncologist says it might not be as effective this time, so will try something else if it isn't.  He had very few side effects with it the first time;  just mainly freezing cold for a day or so afterwards and some nausea which pills took care of. 

Hang in there.  I think they all try to deny the situation as long as they can.  His remission to him meant he had beaten the cancer.  Still says he has.  I know better.

RE: Stage 1V Pancreatic Cancer

by capngene on Fri Aug 29, 2014 07:51 PM

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I highly recommend Massachusetts General hospital's Pancreatic Cancer Center. It is one of the best in the world, 617-724-4000. Dr. Carlos Fernandez del Castillo performed my surgery. You will need much prayer support, determination and quality care. Send me a private message if you want to talk.

RE: Stage 1V Pancreatic Cancer

by murf99 on Fri Aug 29, 2014 08:06 PM

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On Aug 26, 2014 2:16 PM lestom wrote:

On Aug 26, 2014 1:20 PM Hussy wrote:

I know you are worried about how your husband will be when the chemo starts.  For what it's worth, my husband did Fulfirinox which everybody said can be totally brutal, so we were prepared for the worst.  To our suprise, his side effects were very manageable -- just fatigue and some transient neuropathy in his fingertips.  Virtually no nausea or diarrhea.  So you never know. 

I can relate to what you're saying about Tom thinking everything will work out and you not feeling that way.  My husband's outlook is pretty Tom-like in this respect whereas I feel more the way you do.  I just try to respect his wishes -- if this is the way he needs to deal with this disease, then I must accept it.  One of the reasons I come to sites like Cancer Compass is because I know I can be honest about my fears and worries without burdening my husband.

That is just how I feel Hussy, talking to like minded people helps me tell the truth.

When my husband talks to me I cannot bring myself to argue the point with him, I don't want to burst his bubble.

Lestom,

 My wife Kathy was diagnosed on Dec 23rd, 2013 with Stage IV PC. We found a doctor who has had success treating stage IV PC (one survivor is cancer free after 7.5 years & multiple lived 5 years). Kathy's CA19-9 was 40,820 when she started his treatment, this week her number is 33 (below 35 is considered "normal"). I have his therapy all documented and now am tracking 4 Stage IV PC patients of his today, all of whom see the same response on this therapy. Write me and I'll give you the therapy to give to your doc and I'll explain why it works. Kathy's CA 19-9 dropped 33% PER WEEK over the course of 8 months. It's a tough road but it can be done. Dr. Chue (Lifespring Cancer Center) will consult with your oncologist to insure that the therapy is administered correctly. And Yes it starts with Gemzar & Abraxane (or Paclitaxel, which is much less expensive), but the Chue Protocol is very different than other therapies. This therapy uses all FDA approved drugs. DO NOT delay, any CA 19-9 over 20,000 means the patient is in SERIOUS condition and therapy MUST start immediately. If over 40,000 very little time is left. Time here needs to be measured in days NOT weeks. You need to be the patient's advocate demanding quick and decisive action. My email is     murf_lef  at  firenza-llc   dot  com.  PLEASE GET IN TOUCH AND LET ME HELP. Other patients/caregivers of Dr. Chue are also available to talk to.

RE: Stage 1V Pancreatic Cancer

by mdailey on Fri Aug 29, 2014 08:13 PM

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A little over two years ago my exhusband and best friend was diagnosed with PC.  A month or two later a client walked in my door and I could tell immediately from his appearance that this man was also battling something and it turned out it was also PC.  This man was told by every doctor he saw on the West Coast to get his affairs in order - his cancer was too far advanced for any surgical options but his wife refused to accept that.  They found a Dr on the East Coast that suggested chemo or radiation (I can't remember which or if it was both) and they flew there for a few months.  When I met him it had been 3+ years since his diagnosis and they had just returned from a vacation.  Recently it was time for me to follow up with this client and I could not bring myself to make that call.  I couldn't take the thought of hearing he had passed so a coworker did it for me and HE ANSWERED THE PHONE!  5+ years later he is still hanging in there and I won't tell you that everything was sunshine and happiness but he got to see his youngest son graduate and he got to travel with his wife and enjoy more birthdays.  I don't tell you this because I know anything about what is in store for you and your husband but only to tell you that while the prognosis is grim with this awful awful disease there is no reason to believe with proper treatment and buckets of hope and luck maybe your husband and you can have more time?  My motto was expect the worse, hope for the best and most of all fight like hell.  My thoughts and prayers are with you both.

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