Thursday, October 15, 2009
Almost 4 Years
Mom is going through her biannual vaccine treatment. She's doing very well! We saw Dr. Hutcheon a couple of days ago as well. He mentioned the four year mark and the fact that Mom is doing very well. We discussed her periodic eating problems and he thought it was an issue with her stent getting plugged. He was quite pleased however with the overall state of the stent and stated that it has lasted well beyond its time. It sounds like the stent will need some intervention at some point - either insertion of a new one or burning it out (?). I remember asking him at the time he inserted it if the stent was permanent (I had read they were not) and he replied that it was. I think he was possibly thinking it would outlast Mom but he seems to thankfully have been wrong. It's been raining here so the drive to Hopkins is a little more difficult. One more day of blood draws and we are good for another six months.
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17 comments:
This is great news. I have been following your blog since the Spring of 2008 when my father was diagnosed with this disease. Your blog inspired my family to seek treatment for my father at Hopkins. They do marvelous work there and we will be forever grateful to the entire Hopkins team that cared for my father before, during and after the Whipple procedure. Unfortunately, in spite of their amazing efforts, my father succumbed to this disease earlier this year. Your love and dedication to your mother is touching and your tenacious and pragmatic approach to helping her get the best care is a beautiful act of love that speaks to what a great person and mother she must be.
We are strangers but I feel a deep connection to you and to your mother and I will continue to follow her story and pray for continued good health. Thank you for sharing this journey – your willingness to tell this story helped us find the best treatment for my father.
-JM
Thank you for the very kind thoughts. I'm sorry to hear about your father and I hope he did not suffer too much.
Thank you so much for your informative blog. It really is a great service to others. My mother will be having a Whipple Nov. 20, 2009 at JHU and participate in the Phase II clinical trial. A direct question for you: how do you determine the best clinical trial? Do you know anything about the work being done by Dr. David A. Tuveson in the UK?
Ginny Thompson
ginnytho1@yahoo.com
Thanks for your blog...My Mom just got the news today from her doctor.
JON
I'm very sorry to hear that - I hope she does well with her treatment.
I just came across your blog. Quite a tale.
I am at the 5 1/2 year mark and had the adjuvant VMP protocol in Houston at MDAnderson. All my scans have been clean so far, but my CA 19-9 has been slowly uptrending since 9/07 so I am very interested to hear that your mom's marker went down after some high in the 40s.
Best wishes to your moom.
Her marker has fluctuated slightly up and down but not by very much. Given the aggressive nature of the disease, I don't think I would worry too much about a small movement. 5.5 years is a wonderful milestone - it seems that getting past a few years really is significant. Best wishes...
Eugene;how is your mother doing?
When she has had the vaccinations,were there strong reactions?
Glad she is doing so well!
Do you know how many others are in your clinical trial at JH?I'm hoping that the results are good enough for the FDA to make it available to those in need.
Best,
SAS
Eugene;how is your mother doing?What has been her reactions to the vaccine?
Hope she is well
SAS
She is doing pretty well these days. She was in the hospital a month ago due to a blocked stent but it seemed to clear on its own.
The vaccine seems to be fairly benign in terms of side effects. Maybe a fever, some itching and swelling but nothing compared to chemotherapy. So it's great in that regard.
I believe there are maybe about 20 or 30 people in the trial and I guess they are still a long ways out from any sort of results. If I recall correctly, the latest results were not as promising as initially reported in the first study.
So who knows what has been effective so far in keeping things stable. I believe one study that has held up under scrutiny is the Picozzi protocol. I haven't looked around to see what other new things are available recently so the landscape may have changed a lot.
uEgene;that is great news!May her success continue.
I've been researching the history of the vaccine;it appears that 3 of the 14 in that original phase 1 are still alive at 12 years!
I believe they are also taking part in the phase 2 that your mom is in;to receive booster shots every 6 months.Apparently they discovered that the benefit for most lasted 3 years,so they decided to give those boosters to those survivors from the phase 2,and recruit an additional 40 or so with the new protocol.
This could provide JH with enough data to go to a phase 3 which would be a very exciting development.
I heard that Dr. Picozzi's latest trial was halted because of high toxicity in most patients.
Best
SAS
Eugene;also wanted to mention to you the discussion board for PC patients at JH;very informative and perhaps you could share your mom's great story there;its an inspiration
SAS
Hi Eugene, thanks for creating great and inspire blog, i hope other readers can take an advantage too when read your blog...
I just found your blog. My husband is scheduled to have surgery next week at Columbia in NYC. I am researching follow up care and followed threads regarding the vaccine. Is there a definitive link (Hopkins, perhaps?)from which I can obtain more information?
My husband did very well on GTX therapy, but currently the post-op plan for my husband is radiation. As he had to find his surgical option himself, I am looking at all post-op options, too.
http://trials.johnshopkins.edu/index.cfm?ctg=pancreatic%20vaccine
The link above are the current trials for the vaccine listed on the Hopkins site. I'm not sure if the one my mother is enrolled in is still recruiting.
Laheru's latest paper I believe is at:
http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/3010
I recently heard that the company that is licensed to use the vaccine was having some issues with the vaccine efficacy with other cancer types. I'm not sure about whether this is correct and the exact relationship between the company and Hopkins vaccines so this is all just speculation on my part. The company was Cell Genesys.
Much has probably changed in the landscape of potential treatments since I looked into it four years ago.
I hope your husband responds well to whatever you decide. Best wishes.
Eugene;has your mother had her 6 month vaccine booster yet?
I hear they are starting a new big phase 3 trial for the vax very soon in multi centers across the country;very exciting!
SAS
THANK YOU
pancreatic
http://magazines-for-women-2020.blogspot.com/2017/08/i-had-to-fight-for-skin-biopsy.html
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