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#9048 12-27-2006 12:01 PM
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Hi Marty --

Is your husband going to be in the second or in the third cohort?

So far so good, no side effects after the inoculation, time will tell if the vaccine does induce an immune response. If so this could posibly help our husbands shed this virus (Dr. Gillison says whether the virus is still present after successful treatment is the 100 dollar question.)

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#9049 12-28-2006 06:23 AM
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Hi Gail - He will be in the third. We meet with Dr. Gillison next week. Your updates have been great. We'll have to meet at Hopkins one day or come to Annapolis and have crabcakes!


MARTY-Caregiver to husband (non-smoker/non-drinker)Dx 04/06 SCC Stage IV left tonsil-3 lymph nodes,HPV+,Tx 35xIMRT,35xcisplatin/tarceva,neck dissection 11/06, beginning HPV vaccine JHopkins 04/07.
#9050 01-09-2007 09:42 AM
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Testing for HPV was one of the first things my team did when I was 1st diagnosed. Being a young active non-drinking, non-smoking healthy vegetarian, it was the most likely source. And as we expected I tested positive for 16. Thank you guys SOOOO MUCH for your time, efforts, and sacrifices to test this possible treatment. Words cannot even express my gratitude.....

davew

#9051 01-09-2007 10:52 AM
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There were a couple of very interesting papers published in December 2006, relating to HPV and head/neck cancer -- both in Journal of Clinical Oncology. One is an editorial by Dr. Gillison and the other a study by Dr. Licitra and her colleagues -- both deal with the difference in behavior and prognosis for HPV+ as opposed to HPV- tumors -- Licitra essentially looked at the biological mechanism for this difference and speculates on how this affects disease progression and patient outcome and also, research (as HPV+ and HPV- cancers could well be expected to respond differently in clinical trials). Gillison expands on this latter point in her editorial. She also suggests that staging and therapeutic approach may need to be modified for the two biologically different diseases. And that HPV status should be taken into account when clinical trials are designed.

Both papers have a great deal of information on HPV +SCC, and a number of citations worth following up on for those so inclined.

Gillison's editoral can be read at:
http://www.jco.org/cgi/content/full/24/36/5623

Licitra's paper is her #2 citation, and can be selected to read.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#9052 02-13-2007 04:46 AM
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Hi all --

Another update on the HPV vaccine trial -- Barry and I went up to Hopkins yesterday for his last injection (of four) -- he also met with the ENT for a check-up and also, they took a lot of what they call "study blood" for immune function analysis. This will all be analysed when all four cohorts (4 vaccine doses) have been completed so some months to come to find out results.

As usual, the injection caused no reactions nor any side-effects. So far so good on that.

The exam by the ENT showed everything still "all clear." It was a very interesting meeting, however - as it was the first time the surgeon has expressed an opinion that HPV positive head/neck cancer probably needs a different therapeutic approach than HPV negative cancer. What he said was, "there is probably no reason to call these patients back in for a neck dissection if they have successfully gone through chemoradiation, as these HPV+ cancers respond so well to that treatment and are unlikely to recur. However, I still want to do a ND on HPV- patients because of their risk of recurrence." Six months ago he would not have said that, in fact he was still a bit "miffed" that Barry had declined ND. Now he agrees it was the right decision.

I also spoke to our chemotherapy nurse -- she said that Hopkins is now testing very HNC patient for HPV and has been doing so for 2 years, She said they are finding the rate of HPV-positive oropharyngeal cancer to be about 70-80% (!!). They have been doing some comparative studies now that patient groups can be separated by HPV status, and these confirm what the ENT said re response to treatment and recurrence.

She also said the "multi-million-dollar" question is: if an HPV+ cancer is successfully treated, is the virus still there (perhaps in a latent state) and can there be -- long-term --problems from this? HPV oral cancers have not been studied long enough to know what happens 10-12 years out. One reason everyone hopes this vaccine works, as one goal is to rid the cancer patients of their viral burden. (And we note, the follow-up for the trial is for 15 years...)

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#9053 02-13-2007 12:19 PM
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Gail,

I can't wait to read your follow-up trial posts. Lets see, that will make me a young 74 yr old and I figure I will have appx 15910 posts. What Title will that give me?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#9054 02-23-2007 03:22 PM
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Anyone
I was diagnosed with tonsil and neck cancer in in August 2006. I had surgery and follow-on chemo (Cisplatin and Erbitux) and Radiation treatment for six weeks. The Pathologist at Barnes/Washington University said my tumor was HPV 16 positive.

I would like to contract Dr Gillison and determine if I am elible for this study. Currently, Barnes Hospital/Washington University are not part of the clinical trials.

Can anyone provide contact information for Dr Gillison??

Thanks in advance for your assistance

Jos Sabin


67 yr male. Dx Aug 06 with Stg 4 (T1N1M0)-L-Tonsil & 2 of 18 Nodes left neck positive. Cause HPV 16. Surg 15 Aug and Tx began 16 Oct--IMRT six weeks (5d/wk) and weekly Chemo (cisplatin and Erbitux)6 weeks. Comp treaments 11-27-06
#9055 02-24-2007 09:05 AM
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This is Off Topic to the HPV, but I just re-read Gail's remark:

"he had his last phoresis a week ago (that's where they harvest white bood cells for the post-inoculation immune response tests) -- a two-hour procedure that the Hopkins people try to make as pleasant as possible but it is hard to make pushing all your blood through a machine and then putting it back in really nice! The movies on a large-screen TV and the body-sized heating pad help."

If you know anyone who is in the habit of donating blood, phoresis is another way to do it, plus you can donate every two weeks if you wish (the cells don't store as well as whole blood, but the body recovers from the process much faster).

It's a way to catch up on videos for 'free' and do some good in the process <grinz> I used to be a regular phoresis donor until they decided to exclude donors who had lived in Europe/UK (Mad Cow concerns).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
#9056 02-25-2007 02:02 PM
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Sabja,
Here's a link to the Dr's contact page at Hopkins. There is also a link on the page for clinical trials at Hopkins:

http://www.hopkinskimmelcancercenter.org/experts/doctor.cfm?doctorid=276

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
#9057 02-25-2007 04:54 PM
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Gail, thank you for the 2-13 update, please keep them coming.
Sharing your story of Barry's recent ENT visit and his change of thinking within 6 months indicates the beginnings of acceptance. The HPV connection is gaining validity. Awareness is growing.
Our story is similar. My suggestion of HPV was dismissed by Mike's team early on. They knew nothing of the connection. No testing was done. Neck dissection was recommend by the ENT after complete response to chemoradiation. We informed him of the studies, publications and current reconsiderations in protocol. We agreed to a time out to think about it and meet later. Our next meeting, the ENT informed us he attended a seminar over the weekend. He now concluded it was appropriate to moniter on a monthly basis due to Mike's complete response and not fitting the tobacco/alcohol/age risk profile.

I thank you and Barry again for your contributions to this important study.
Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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