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#46225 09-09-2005 09:20 AM
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Actually one of the primary and most important modes of HPV's action is known, though not the only mechanism by which it works its damage. The virus interferes with p53 that causes natural apoptosis in cells, creating immortal cells, the most basic quality of a malignant cell.

Cancer treatments even for the same staging of disease around the country vary widely, and are as unique as the doctors training and the facilities preferences where they are working. Variances (some good, some a sign of out dated thinking) definitely exist. Having just come from a conference on emerging and novel treatment modalities of cancer treatment, and as a presenter at this same conference, I am fairly well up to date on what the current thinking is. Remember that a drug TRIAL protocol, which is what you have described, is not an established treatment protocol, as by definition it is still being determined if it is effective. The future is indeed targeted therapies, which were spurred by Irresa, thought by many to be a drug failure. However in approximately 10% of the patients treated with it, it was 100% effective. These patients it turned out had genetic similarities. The idea that mapping of genetic similarities will yield patient specific protocols based on mapping and defining these similarities was given a shot in the arm. One day, it may be possible to tailor a drug and treatment protocol unique as a single individual. The mapping of the human genome (now completed) has subsequently lead us to the conclusion that cancer is not a handful of diseases, but actually hundreds of individual diseases. This exponentially makes that quest for cure more difficult, but it is a matter of time and experimentation to find what works against what. It is likely that the transformation of cancer from a killer to a manageable disease that could be lived with, even without permanent cure, will involve all the above, combined with angiogenesis inhibitors, Cox-2 inhibitors, targeted receptor blockers, and more. Treatment as we know it today will be a dinosaur in the foreseeable future.

But in general given that every hospital has its own guidelines for treatment (even those that generally follow the NCCI guidelines), it is wrong to state that what you are seeing at Hopkins is a reflection of what is happening nationally, or for that manner any other given institution. Do other institutions have research programs involving HPV ongoing? For sure. But sampling of tumors for HPV is not a matter of national routine.

In CA next year cervical exams will include mandatory HPV testing. People who are positive for it will be on a more abbreviated recall for testing, as it is the cause of 98% of all cervical cancers. What the problem really is, is not the fact that you have it now, but this lack of understanding of the shedding process and how you get rid of it through some natural process we do not currently understand, since there is no such thing as a viracide. The rate of re-infection is also an unknown, though clearly an important component, and the fact that there is no reasonable manner to test males for it


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#46226 09-09-2005 10:09 AM
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However, in a certain set of HPV-positive tumors the viral oncogene is not incorporated into the host cell's DNA and in some it is -- so what is going on is not clearly known -- these again may turn out to be sub-sets of the general HPV+ tumor.

I read an interesting paper which refers to what Brian mentions -- some people seem to be able to rid themselves of the virus -- the study found that ~25% of the women with HPV+ pre-cancerous lesions which were scheduled for surgery (often cryosurgery) had no sign of the lesions when they came in for the treatment. And certainly not everyone + for HPV-16 gets cervical cancer or oral cancer.

Still much to learn...

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!
#46227 09-09-2005 11:26 AM
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Gary-I will ask my Mom about the midpoint scan. The only thing that she mentioned to me about the doctors commenting on her progress was the the Radiation Doc told her that he we very pleased with what he saw on the xray film. According to my Moms perception they were xraying very frequently. Not sure if this was to make sure the location of the IMRT was on target or to evaluate progress. What does complete response mean? She is not scheduled to meet with a doc again for 2weeks. Then she goes in for a check up with the chemo dr. The IMRT doc told her he would scan her in 2 months. I am just wondering if she should consider MD Anderson even if the scan comes clean. I am so worried about lurkers in the nodes.

Gail-will they test you for the virus on the pap? How do they test males?

Gary-any word on when that HPV/gyn test will be standard procedure in NY?

Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
#46228 09-09-2005 01:55 PM
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Gail, while you have obviously boned up to some extent on this topic, the point that I disagreed with in your original post was this. There is no different treatment protocol for someone who is HPV positive and those that are not. To suggest otherwise is misleading. The other information about this research, at this point in time, is not of any usable value to the posters on this board. Actually there are several other articles out there that elucidate the oncogene issue. They help determine if the HPV is a causative agent or a co-factor / facilitator. But again, is there any practical application for this knowledge to patients right now? No. Also you can test positive for HPV and not have any visible lesions, as a matter of fact most individuals do not. So the article that stated that refers to the obvious. Unlike other viral agents, such as herpes simplex 1 or 2, which routinely have distinct lesions associated with them, HPV does not. When it does the lesion is flat, barely visible to the naked eye, not painful, and the positive person would have no indications that they have it. You can test positive for HPV and have no lesion associated with that positive result. All this information is interesting but not usable. Since it will invariably come up, there is no safe sex with HPV. Because it is an epithelial to epithelial transfer and not a fluid transfer, condoms do not protect you from it. There is also no evidence that with a positive HPV individual that the virus is transferred via the blood from the cervix to the oral cavity or any other definable location in that individual at this time. It appears to stay localized, unlike herpes simplex which lives on the ganglia and can unilaterally disseminate itself to multiple locations in the same person.

There is no practical way of testing males at this time.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#46229 09-09-2005 06:17 PM
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You guys are somewhat to way off subject. Tammi's mother is not interested in this science, Tammi wants to know if her mom has recieved adequate treatment or if she should seek additional insight.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#46230 09-10-2005 12:20 AM
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Hi Tami,
to get back to your topic and questions:
The midpoint scan is typically a CT and taken to check the progress of the treatment plan and make adjustments if necessary.

The weekly x-rays on the LINAC are more of an alignment check and have little diagnostic value from what I have seen.

"Complete Response" means that the tumor has vanished - that it has completely responded to the treatment protocol.

"Lurking nodes" are the reason that the ENT/H&N docs perform the palpation exam monthly or whatever exam schedule she is on at that point in treatment. If the nodes are enlarged, they will have an almond shaped feel to them (so my H&N doc tells me). They also do a "visualization" exam with mirrors and occasionally a nasolaryngoscope (more so in the beginning - I haven't been scoped in 2 years).

I saw all three docs at 6 week intervals in the beginning, especially when I was still suffering from the treatment side effects but now I see the H&N surgeon every 4 months and the other 2 every 6 months. I have bloodtests done every 6 months and an annual MRI and chest x-ray.

It's great that she had IMRT. It took me 18 months to get my salivary function almost back to normal and I am fine now and enjoying life with a whole new appreciation. Hopefully your mother will get there too. As I said earlier, I had my Cisplatin shortened to 2 treatments because I reacted so horribly (or so well) to it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#46231 09-10-2005 03:36 AM
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Tami Offline OP
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Thank you!
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
#46232 09-10-2005 05:00 AM
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This IS off-topic so will be short -- I did not say there is currently a difference in treatment for HPV+ and non-HPV+ HNC -- I said that many researchers feel that the biological differences in the tumors will eventually lead to a more targeted treatment for HPV+ cancers, which might include a vaccine. This is in several of Gillison's papers as well as in papers from other researchers on the subject.

Not that this helps anyone right now, other than having a more favorable prognosis.

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!
#46233 09-10-2005 06:59 AM
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I have avoided getting involved in this HPV thing because there are clearly people smarter than me involved. My issue is that the less knowledgeable of us could take the HPV posts the wrong way and call into question our treatment choices. Could I have had a more favorable prognosis if they had checked my tumor for HPV? I doubt it. We have had brief postings on HPV before but this time it just will not go away. Can't this entire issue just be chalked up under ongoing research and end today?

#46234 09-12-2005 07:54 AM
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Tami Offline OP
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Mom seems to be getting more down and out. She is home and not making much progress as of yet. Her mucous is gagging her and creating more problems. She has no interest in eating and doesnt like using her peg. She is almost 3 weeks out from her last IMRT and last chemo cocktail. Should she be feeling this crummy still? Is there a prescription for thinning out this mucous? She currently is not on anything for it.

Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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