Stage 1V Pancreatic Cancer

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RE: Stage 1V Pancreatic Cancer

by Clarityx2 on Mon Sep 01, 2014 06:26 PM

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I'm very sorry to hear about your husband's diagnosis. I have had pancreatic cancer so I know how difficult this can be. I have written a blog about it and have a section called Resources that lists a lot of books and tapes that helped me greatly. There are some really helpful books just about pancreatic cancer and also books and websites about dying, frankly, that I also found very helpful. My blog is www.livingwithancreaticcancer.com and the books and related material will be in the Resources section. I'm not trying to steer anybody there, but it's absolutely free and there are no links to buy anything. Just my attempt to help build community for a very difficult diagnosis.

Best of luck

RE: Stage 1V Pancreatic Cancer

by ctine1 on Fri Sep 05, 2014 09:00 PM

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Don't give up hope. I too am stage 4 and have been since Nov. 2013. At that time I was given 9mns to 2yrs. Nine months have come and gone and I am still fighting. I am on my 4th different chemo regimine. Hopefully this is the one that will kill the tumors on my liver. If not, on to the next treatment.  Look at each new day as a blessing and maybe tomorrow is the day they get closer to finding a cure. Good Luck

RE: Stage 1V Pancreatic Cancer

by lestom on Mon Sep 08, 2014 10:47 AM

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On Sep 05, 2014 9:00 PM ctine1 wrote:

Don't give up hope. I too am stage 4 and have been since Nov. 2013. At that time I was given 9mns to 2yrs. Nine months have come and gone and I am still fighting. I am on my 4th different chemo regimine. Hopefully this is the one that will kill the tumors on my liver. If not, on to the next treatment.  Look at each new day as a blessing and maybe tomorrow is the day they get closer to finding a cure. Good Luck

My husband has now had two sessions of Gemzar/Abraxane out of a cycle of 3 on and 1 off.

Up to now he had had no ill effects, maybe just a little tired.

We were very woried over the side effects before he started Chemo.

My worry is the lack of appetite, his weight is going down even though he is eating high calorific foods.

We booked a holidat in Portugal, a plece we love before Tom became ill, Oncology have said go ahead and travel but do a week not ten days, they can work around a week.

To be honest, my fear is how quick will the cancer take hold.

RE: Stage 1V Pancreatic Cancer

by chandrika on Tue Mar 21, 2017 09:24 AM

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On Aug 29, 2014 8:06 PM murf99 wrote:

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.

hi , 

my mom has been recently diagnosed to be having stage 4 pancreatic cancer and doctor says its inoperable. we consulted a best cancer care hoapital in india.. her ca19-9 levels are 41000.. she s just 48yrs old:( her chemo is gonna begun. need some hope.. please pray for her

RE: Stage 1V Pancreatic Cancer

by GBAdvanced on Tue Mar 21, 2017 05:41 PM

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On Mar 21, 2017 9:24 AM chandrika wrote:

On Aug 29, 2014 8:06 PM murf99 wrote:

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.

hi , 

my mom has been recently diagnosed to be having stage 4 pancreatic cancer and doctor says its inoperable. we consulted a best cancer care hoapital in india.. her ca19-9 levels are 41000.. she s just 48yrs old:( her chemo is gonna begun. need some hope.. please pray for her

Hi Chandrika, Don't lose hope. Ask them to administer gemcitabine, cisplatin, nabpaclitaxel combo ( maybe even slightly reduced dose if she is less weight). This combination has great reviews and also 20% advanced stage 4 got completely remission. So there is hope. Also , get her IHC test done...onquest in Delhi could do it for under $10k INR. Which city are you in INdia? I have my dad suffering with stage 4 gallbladder cancer which has similar prognosis. Take care!

RE: Stage 1V Pancreatic Cancer

by chandrika on Wed Mar 22, 2017 05:33 AM

Quote | Reply

On Mar 21, 2017 5:41 PM GBAdvanced wrote:

On Mar 21, 2017 9:24 AM chandrika wrote:

On Aug 29, 2014 8:06 PM murf99 wrote:

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.

hi , 

my mom has been recently diagnosed to be having stage 4 pancreatic cancer and doctor says its inoperable. we consulted a best cancer care hoapital in india.. her ca19-9 levels are 41000.. she s just 48yrs old:( her chemo is gonna begun. need some hope.. please pray for her

Hi Chandrika, Don't lose hope. Ask them to administer gemcitabine, cisplatin, nabpaclitaxel combo ( maybe even slightly reduced dose if she is less weight). This combination has great reviews and also 20% advanced stage 4 got completely remission. So there is hope. Also , get her IHC test done...onquest in Delhi could do it for under $10k INR. Which city are you in INdia? I have my dad suffering with stage 4 gallbladder cancer which has similar prognosis. Take care!

Thanks for ur reply.. hope chemo works.. will update wat my mom will be given.. am consulting in Manipal hospital.. Bangalore..

RE: Stage 1V Pancreatic Cancer

by GBAdvanced on Wed Mar 22, 2017 03:36 PM

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Sure Chandrika- take care. Who is your doctor in Manipal? Also, pls check the below:

-robotic surgery ( minimal invasion)

- Hypothermia- is this avl?
- Photon radiation therapy

-  Any dendrite, immune therapy?

Pls let me know as well as I think they have some latest equipments.. We were at Sakra Bangalore for my dad and later shifted him to Mumbai with family.  Take care and prayers for your mom to rebound with good health.

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