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HPV positives may be being over treated

scottied's picture
scottied
Posts: 37
Joined: Nov 2010

Went for a check up at Johns Hopkins with my Radiation and Chemo doctors yesterday and everything checked out great. They both say that im doing extremely well. My oncologist was telling me that they discovering lots of new things about HPV+ cancers. She said that there are two clinical trials going on right now and that one of them is a nationwide. They think that HPV+ might be being over treated.What she told me is that in the clinical trial they are giving a stronger dose of chemotherapy first ( I think she said 9 weeks but not sure)to shrink the tumor first followed by 5 weeks (as opposed to 7 weeks) of radiation - doing less damage to healthy tissue in the body. Also they are doing more pinpointed radiation to help reduce the amount of damage to the body. She said they will not have definitive answers for a couple of years of the study. Maybe if you look online you could find out more info. Just passing along the info.

Take care
Scott

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Yes, I have heard that HPV positive tumors are being overtreated. Wish we knew Buzz's status as he was never tested for HPV, although he is a non-smoker. The treatment was brutal and I wish he could have been tested and spared the worst of it. Karen

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Thank you for the information, I'm sure many who are HPV+ will be interested in this.

Congratulations on the great check up!!!

Stay well,
Glenna

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I had nine weeks (three week cycles) of Chemo, then seven weeks of concurrent weekly Chemo with 35 daily rads, (HPV+).

Even though the trials might be showing the possibility of over treating. I don't have concerns (anyways at the moment) if I was over treated.

It was the best option based on the information and knowledge at the time (Jan2009).

I'd rather have been over treated than under treated.

I'm sure this also has the "Everyone is Different" factor attached to it also, at least for the moment.

I do know that I had Primary Tonsil Cancer SCC STG III, with a secondary tumor in the throat near the carotoid artery. The tumor did actual dissolve completely away between the 2nd and 3rd cycle of the initial nine weeks of triple chemo (Cisplatin, Taxotere and 5FU).

But, it is always good to know they are making progress with the possibility of reducing the treatment time and methods.

Best,
John

Fire34
Posts: 351
Joined: Feb 2010

As I was part of a clinical trial also, I dont feel like I was overtreated either. Some of us here have had more than the 35 rads, myself had 49 and I believe some had more. I wish the clinic would let you know the outcome of the trials you were a part of though. Hopefully this news will help those in the future.
Wishes & Prayers
Dave

areomech's picture
areomech
Posts: 33
Joined: Sep 2010

Before I started treatment, my ENT told me that I will be over treated for my cancer. When I ask him why? He said, "Unfortunately there is not enough infomation out there on how much radiation it will take to kill the cancer effectively. Which ties the radiologist's hands. Unfortunately this forces the radiologist to use known methods to effectively kill the cancer." This is so frustrating that researchers did not start studying this right away when they found out that HPV responds well to radiation and chemo. Think how many of us this could help. Faster recovery time less torture on our souls. Less heartache for love ones.

Keep up the good fight
Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

I just had my first PET Scan and Exam this week and have No Evidence of Disease. My treatment regimen was surgery, rads and chemo. I am gratefull that I am alive and cancer free. My Tonsil CA was considered VERY AGGRESSIVE so they used the most current and up to date treatment modalities available.

Di I possible have too much treatment? Maybe, but I am NED and alive.

It will be very interesting over the next 2 years as to what changes will be made to the treatment plans.

Mike

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

I heard this one also. I'm betting I was overtreated at 8 weeks of rads with concurrent cisplatin for HPV pos BOT. However, as already stated, I'd prefer overtreatment to undertreatment, given the current lack of knowledge regarding how much treatment is actually required for a cure. Here's hoping it will help those requiring treatment in future.

Deb

connieprice1's picture
connieprice1
Posts: 290
Joined: Oct 2010

Scott, Always nice to hear someone is doing well. They have made great strides with the treatment of head & neck cancers. My wife is in a clinical trial at MD Anderson Cancer Treatment Center (MDACC Study Summary 2009-0885)comparing HPV- (tobacco related or really anyone who is not HPV+ ) to HPV+ patients. Connie had a dramatic response after her first treatment of chemotherapy to the tumors at the base of her tongue and the two lymph nodes on her neck. She has done her 19th of 33 radiation treatments and it is starting to really get rough on her ability to talk and swallow. She had a feeding tube placed last Tuesday. I have wondered many times if she is being over treated but I suppose I might have been offended if they had over treated half the patients and told her that they were going to not do the radiation on the other half. Doctors have to be positive before they take chances with someone's life. I hope they get the info they need from this and other studies to someday spare HPV+ patients from radiation if it is not necessary. I am proud of her for being in the study as it was strictly voluntary. Best Regards, Homer & Connie Price

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