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murf99's Message Board Messages

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RE: Stage 1V Pancreatic Cancer

by murf99 - August 29, 2014

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.

I can not recommend Dr. Chue in Seattle (Lifespring Cancer Center) more strongly. I've met a stage IV lung cancer patient with many mets that he has been able to get cancer free. My wife started with him as a stage IV pancreatic cancer patient with a CA19-9 of 40,820 and today has a CA19-9 of 49 after 7 months of treatment. Good Luck.

murf_lef at firenza-llc dot com

Murf

RE: Gemcitabine/Abraxane

by murf99 - July 10, 2014

My wife, Kathy, is a Stage IV pc patient using a therapy from Dr. Ben Chue in Seattle. He is very willing to work with your oncologist to have them administer the "Chue Protocol" for your loved one. Kathy is 58 and was diagnosed on Dec. 23, 2013. After testing (CT, needle biopsy & PET Scan, CA 19-9 = 23,052) she had one full dose of folfirinox at Kaiser in Calif. but they held out no hope for her. Hundreds of hours searching on the internet led to my discovery of Dr. Chue. We left Kaiser for a chance at survival with Dr. Chue, who's longest surviving Stage IV pc patient is 7.5 years after diagnosis and 5.5 years cancer free. Kathy arrived at Dr. Chue's with a CA 19-9 of 40,820 and after 15 weekly treatments (Gemzar & Paclitaxel) her CA 19-9 is  68. Another Stage IV patient there started with a CA 19-9 of 218,219 and after 21 months of treatment has a CA 19-9 of 53. Dr. Chue does not shy away from Stage IV patients. If you'd like more info please contact me at   murf_lef  at  firenza-llc  dot  com. I'd be glad to send you more info.  Murf 

P.S. Paclitaxel is the generic from which Abraxane is created.

My wife, Kathy, is a Stage IV pc patient using a therapy from Dr. Ben Chue in Seattle. He is very willing to work with your oncologist to have them administer the "Chue Protocol" for your loved one. Kathy is 58 and was diagnosed on Dec. 23, 2013. After testing (CT, needle biopsy & PET Scan, CA 19-9 = 23,052) she had one full dose of folfirinox at Kaiser in Calif. but they held out no hope for her. Hundreds of hours searching on the internet led to my discovery of Dr. Chue. We left Kaiser for a chance at survival with Dr. Chue, who's longest surviving Stage IV pc patient is 7.5 years after diagnosis and 5.5 years cancer free. Kathy arrived at Dr. Chue's with a CA 19-9 of 40,820 and after 15 weekly treatments (Gemzar & Paclitaxel) her CA 19-9 is  68. Another Stage IV patient there started with a CA 19-9 of 218,219 and after 21 months of treatment has a CA 19-9 of 53. Dr. Chue does not shy away from Stage IV patients. If you'd like more info please contact me at   murf_lef  at  firenza-llc  dot  com. I'd be glad to send you more info.  Murf 

My wife, Kathy, is a Stage IV pc patient using a therapy from Dr. Ben Chue in Seattle. He is very willing to work with your oncologist to have them administer the "Chue Protocol" for your loved one. Kathy is 58 and was diagnosed on Dec. 23, 2013. After testing (CT, needle biopsy & PET Scan, CA 19-9 = 23,052) she had one full dose of folfirinox at Kaiser in Calif. but they held out no hope for her. Hundreds of hours searching on the internet led to my discovery of Dr. Chue. We left Kaiser for a chance at survival with Dr. Chue, who's longest surviving Stage IV pc patient is 7.5 years after diagnosis and 5.5 years cancer free. Kathy arrived at Dr. Chue's with a CA 19-9 of 40,820 and after 15 weekly treatments (Gemzar & Paclitaxel) her CA 19-9 is  68. Another Stage IV patient there started with a CA 19-9 of 218,219 and after 21 months of treatment has a CA 19-9 of 53. Dr. Chue does not shy away from Stage IV patients. If you'd like more info please contact me at   murf_lef  at  firenza-llc  dot  com. I'd be glad to send you more info.  Murf  

On Jun 16, 2014 4:01 PM Harts wrote:

On Jun 14, 2014 5:11 AM murf99 wrote:

On Mar 19, 2014 10:37 PM Harts wrote:

Hello. Got some news today. Tumor marker is up to 8569. Madison called and said I won't be in the clinical trial right now. I'm on their waiting list and could possibly start in 3 months. So, I'll be getting the old chemo folfirnox tomorrow. That's the treatment that lasts 21/2 days. I'll need 5 shots for 5 days to build up the white blood cells that will be destroyed by the chemo.

I can't lie, I'm a bit bummed. The tumor marker numbers doubling does bother me more than not beginning the clinical trial. I wasn't really looking forward to the unknown drug side effects and driving to Madison weekly. I'm also not looking forward to the folfirnox either. And I'll be losing my hair again. Urggg. It was really growing back too.

I guess I wanted you all to know that this stuff does get to me. I'm not strong all the time or positive all the time. It's real and it can be scary. But....I'm ok. Really!!

Karen

Karen,

 How are you doing? Haven't heard from you recently.

 MurfKar

Hi murfkar. I'm doing OK. Lots of heartburn-gas-stomach- intestinal issues. Never feel just right.

How is your wife doing?

Feeling weak but just went on a 4 week chemo break. Dr. Chue's protocol is continuing to show it's muscle as last week Kathy's CA 19-9 was measured at 68. So down from 40,820 to 68 in 15 weeks of treatment. She still feels all of the chemo related issues that everyone else has but the progress in driving the tumor smaller has been good. Send me a private message with your email address and I'll send you a copy of her CA 19-9 results vs. time if you're interested. Kathy's Round 2 treatment will be a completely different set of chemo chemicals so that the cancer does not become resistant. Hang in their and cherish your good days.

murf_lef at firenza-llc dot com

Murf

On Mar 19, 2014 10:37 PM Harts wrote:

Hello. Got some news today. Tumor marker is up to 8569. Madison called and said I won't be in the clinical trial right now. I'm on their waiting list and could possibly start in 3 months. So, I'll be getting the old chemo folfirnox tomorrow. That's the treatment that lasts 21/2 days. I'll need 5 shots for 5 days to build up the white blood cells that will be destroyed by the chemo.

I can't lie, I'm a bit bummed. The tumor marker numbers doubling does bother me more than not beginning the clinical trial. I wasn't really looking forward to the unknown drug side effects and driving to Madison weekly. I'm also not looking forward to the folfirnox either. And I'll be losing my hair again. Urggg. It was really growing back too.

I guess I wanted you all to know that this stuff does get to me. I'm not strong all the time or positive all the time. It's real and it can be scary. But....I'm ok. Really!!

Karen

Karen,

 How are you doing? Haven't heard from you recently.

 MurfKar

On Jun 12, 2014 3:52 AM VAgirl2 wrote:

Murf99:  

Please share the name & location of your wife's doctor and describe the chemo protocol that has been so successful for your wife (what "standard chemo chemicals" are in it?). Thanks much.

VAgirl2,

My wife Kathy just finished Round 1 of her chemo from Dr. Ben Chue of Seattle (www.lifespringcancer.com). Kathy has Stage IV Pancreatic Cancer. When diagnosed her CA 19-9 was 40,820, last week it was 96. Normal is below 37.

Her first round was Gemzar & Paclitaxel given in a reduced dose (~ 1/3) each week for 12 treatments (Metronomic dosing). Some weeks her liver numbers were high enough to cause the doctor to only give her Paclitaxel, so in total she's had 15 weeks of treatment. She also gets Intron A (Interferon) and Leukine to support her immune system.Dr . Chue graduated from Yale and his original medical studies were in Immunology at UCSF before shifting over to Oncology were he originally worked at the Fred Hutchinson Cancer Center in Seattle.

Round 2 is a mix of different chemo chemicals, all FDA approved. This prevents the cancer from becoming resistant. Round 3 is yet a different mix of chemicals for the same reason. I have a copy of the complete Round 1, 2 & 3 Chue Protocol. Dr. Chue is more than willing to help your doctor implement his protocol. It just needs to be followed precisely. Other doctors have changed the protocol once the patient got seemingly 'better' and the results were not good.

Kathy's CA 19-9 has been measured every week since starting the "Chue protocol" and I'm very happy to share the data with you. Since starting the Chue Protocol her CA 19-9 has never gone up. She averages a 33% reduction in CA 19-9 each week on this protocol.  She is still getting chemo so she feels poorly but the math of the chemistry measurement is very good. She's on break now for 4 weeks and is taking Tarceva, Intron A & Leukine. She'll get a PET scan in 2 weeks and we're expecting it to be completly clear, although the cancer tumor marker test (CA 19-9) tells us we're not done. It's just that the PET scan can only 'see' things so small. At such low CA 19-9 levels the tumor should not be visible. Of course the proof of that will be known when we see the scan.

Dr. Chue has one patient (Stage IV PC) who is alive and cancer free after 7.5 years from diagnosis. I know of two others (also Stage IV PC) who lived over 5 years and another is approaching 2 years. The one approaching 2 years started with a CA 19-9 of 218,219 and a few weeks ago it was 53. Kathy will make 6 months in 2 weeks.

Please contact me for the data at:

murf_lef  at  firenza-llc  dot  com

Hope this helps & don't delay 'cause this disease moves quickly,

Murf

From the Web::

Lifespring Cancer Treatment Center
2825 Eastlake Ave E, Suite 200
Seattle, WA 98102-3085

Phone: 1 (206) 686-1266
Fax: 1 (206) 686-1268

Karen,

Glad your numbers went down! My If you or a loved one are reading this wife's numbers have continued to drop since she left Folfirinox and started the "Chue Protocol" (Dr. Ben Chue of Lifespring Cancer Center in Seattle). She's had 6 treatments and has seen her CA 19-9 drop from 40,820 to 3,248 this week. Also the chemo is much easier to tolerate even though she gets it every week. The protocol also has support for the immune system and a special component to prevent the cancer from becoming resistant to the chemo, which is why so many who get ONLY ONE DRUG from beginning to end of their treatment for pancreatic cancer usually do not make it.  If you or your loved one has this disease I strongly recommend you get in touch with Dr. Chue. (He will direct your oncologist how to apply the protocol, follow it religiously.) On normal weeks, we see 30% drop in CA19-9 PER WEEK.

Melissa,

Please do not delay, get your husband to Dr. Ben Chue in Seattle, now. My wife is Stage 4 PC and on the "Chue Protocol" she's seen her CA19-9 (Cancer Tumor Marker) DECREASE from 40,820 to 3,500 on just 5 treatments and is completely off her morphine. There is a Canadian patient there who started with a CA 19-9 of over 218,000, Stage 4 PC with multiple mets, his CA 19-9 is now 84 and his PET scan is completely clear. I firmly believe this is the only possible chance you have of saving your husband. Don't wait for good luck, make some happen. Murf99

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