My husband has completed 16 chemo taxol/ Carpoplatin & lacks 4 more rads for a total of 35. His RO says he has 90% success rate 5 years out. What are your thoughts on this? It seems like everyone on here has had a reoccurance. His cancer is squamous cell carcinoma, BOT, right tonsil, lymphs involved both sides, HPV 16. Both ENT Oncologist & R O are happy with his progress.
I have been viewing these posts since diagnosis in Oct & they have been very helpful. Thanks for any opinions, etc & I am so sorry any of us have to be here.

HPV, mainly HPV-16 is in the oropharyngeal, has different biology than HNSCC usually caused by tobacco and alcohol. As such, HPV has better response to treatment, and prognosis, but most prior studies, statistics do not include this fact, and just bundle all HNSCC, oropharyngeal cancers wether HPV or not, together, but will separate them in the future. I heard of up to 50 percent improved overall response rate, so each stage is different. There are other factors involved in recurrences, mainly the tumor size, it's location, nodal involvement, extracapsular extension, and other factors, and unfortionatly do happen, but everyone is different.

Good luck with the rest of the treatment, and recovery, and it's a good sign if the doctors are happy.

Hi, vik vik
none of us have a crystal ball to see the outcome. There will always be some worry of a recurrence, but from all the survival data I have looked at for HPV+ cancer, statistically, these are my key benchmarks to dial back my worry monitor:

1. After completing therapy with the doctors happy
2. After about 3 months, there will be some sort of scan
3. A year out of treatment
4. Two years out of treatment
5. Four years out of treatment

At this point, other age related issues and simple dangers such as driving on a freeway or eating sushi are as much as or more worrisome (statistically, not emotionally) as the possibility of a recurrence.

Remember that many of the people on this site complete their treatment, and go on their merry ways with no recurrence.

You and your husband are well on your way to the first benchmark, completing treatment with the doctors happy. This is an important benchmark, and I hope you will dial back the worry.

Best wishes,
Maria

vik, most members do NOT have recurrences! You may see alot of discussion about recurrences here as its everyones biggest fear. Im sorry but I do not know the specific numbers, they dont really mean much to me. I am a 3 time survivor who had little chance of survival but somehow I was fortunate enough to make it thru my 3rd round which was Stage IV. What I have learned over the years is pretty cut and dry, you will either make it or you wont and you will either get a recurrence or you wont. Living life worrying 'what if' will not do you any good. After the mental trauma of battling oral cancer, its pretty hard not to wonder and be concerned about it returning. Worrying about 'what if' it will not change anything at all, it will just steal your time away from you.

You may see many members that are the most active are the ones who have lived thru a recurrence. That isnt a true representation of the recurrence demographics of oral cancer. If you must look at numbers, I think the rate of recurrence is only about 25% of patients who are Stage III or IV for the first 2 years after treatment. So many things go into what the recurrence odds are that its hard to figure out where exactly your situation falls in the numbers game. You may find more recurrence members on the forum due to the fact that the one timers are busy out there living life. They pop in from time to time but many of the single round members arent daily users of the forum. They have recovered and returned to their old lives. Most of the recurrence members will have after effects and other ailments which they will discuss on the forum while also providing assistance to newer members. By helping others it is a great way to focus on the good that you can do instead of worrying about your own problems.

It sounds like your husband is doing very well and has a good prognosis of getting rid of his cancer. Thats the best that can happen! Take it day by day and time heals all wounds. Hang in there, things will improve and one day you will look back at all of this just like ti was a very bad dream.

Good luck!

Vik

What Christine said. Bear in mind that none of us with these recurrences who are posting are dead, are we?. Having the cancer come back is FEAR number ONE. It never goes away, but speaking strictly for myself, I post even if it scares newcomers because I want to show there is hope no matter what. Plus I like to think it cheers people up to think: gee, it could have been as bad as Charm's or Eric's or Christine's or Paul's or Kelly's etc etc.instead of comparing themselves to those who never get cancer.
Charm

Hi,
Kevin is now about 16 months out of tx. So far so good. We do think about recurrence now and then. In the beginning we were fixated on it. What you are feeling and the worry is totally normal and understood.
There are MANY people on these forums who have not had recurrences. I wish I could think of names. The only one that comes to mind quickly is Davidcpa. His dx was very similar to Kevin's, so we are praying for the same outcome.
I know how hard it is, and no matter what we all say you are going to be terrified for awhile, but please try to relax a little bit. The success rate for HPV+ is pretty positive! We are counting on that!
Hang in there!!
Kathy

My husband was diagnosed January 2009 with HPV+ "base of tongue" cancer. John remains cancer free and life is great!

It has been my experience with most health based message boards that once people are through the experience and no longer have "issues" they move on and don't post.

Vik, keeping calm sounds so easy on paper at least. I would concur with what everyone is saying recurrence in this community has been a relatively small percentage from a mere statistical perspective although not to those experiencing it. Try hard to not focus on that and take the time to MAKE THE MEMORIES! This is so important in life in general but much more important in cancer world. Keep on living with cancer instead of living in spite of it. Enjoy every moment you can.

I see you are in TN. I hope you go to Vandy as my first otolaryngologist is now the Director over HNC!

Ed

vik
I am one of those survivors that comes back and lurks once i awhile, but only posts occasionaly. My main reason is that although i was grade IV my treatment went pretty smooth. My main concerns were fatigue and starting to eat real food again. I saw some of the issues others were having on this site and i felt like i was doing pretty good. I think you will find that most of the 'OC activists' either had a hard time with their initial cancer or had a recurrence.

Christine is right. Most survivors get on with their lives after treatment and recovery. The questions i can answer are low hanging fruit, PEG, radition burns, fatigue and what to try to eat first. But, most of the 'regulars' on this site know those answers too.

It's been four years for me and i'm doing fine. I had base of tongue with lymph node involvement and no surgery.

It seems that since i've gone through this i've been introduced to someone who's had it, or had someone ask me to call someone who's got it, or told me about a friend who had OC or was diagnosed with OC at least a dozen times. None of them have had recurrences and all are alive. I met a pastor at a Christmas party and was talking to him about it and he showed me what was left of a neck dissection scar and said he had OC almost ten years ago.

People who have cancer DO have recurrences, but I don't know anyone other than the people i've met through this group or at the OCF marches that have had recurrences.

Vik

Let me chime in once again, that one of the most frustrating things my wife finds is that when she goes to one of the oral cancer support groups sponsored by our local hospitals, there are zero patients with a recurrence. They are all one and done

We are just over represented here on the forum by a major statistical margin
Charm

Actually, and unfortionately, the recurrence rate for SCCHN is quite high. Most of which is seen in smoking, and alcohol related cancer. The overall 5 year survival rate hasn't changed much in the past few decades, and is still under 50 percent, even lower at certain sites. The first two year's is when the majority of recurrences happen, which I may recall to be is in the 40's range, with more occurring in the first year, but seems to level off after that. HPV related cancers have a lower recurrence rate, at 15 percent. I recently read in one of the Journals that an increase in HPV recurrences are being seen after 5 years, which is different from tobacco, and alcohol related, which is seen to level off after the 2nd year, so they are suggesting no de-esculation of treatment outside of clinical trials.

All that doesn't mean much since many other factors are involved, and each person is different, so is treatment, age, type of CCC.........

Hi Paul,

Do you have any links to trials or published peer reviews showing the prognosis of HNC smoking/drinking vs p-16+ cancer? I've not been able to find anything with a 3 arm trial as yet.

don

Don, there is tons of info about HPV+ and all kinds of other things including what you were asking about in your post right on the main OCF pages.

At this time there is still so much to learn about HPV. OCF has been involved with many research studies about HPV. Take a look at what is put on the main OCF site including news stories. Im sure you will find what you are looking for there.

Main OCF site

I may Don, but no specific knowledge of numbers off hand. I come across so much stuff daily, hopefully I saved some or can find it in my computer history or references I have. There is not much comparison with HPV in the past, smoking/drinking vs non smoking/non drinking yes. Future studies or clinical trials have to include HPV status, I believe, and heard there a tissue bank where many samples are going to be banked for future reference.

I'm glad ChristineB posted the OCF link. I forget they exist. Actually, and sadly, I never read any of them, and probably will now, and would be helpful.

There is a recent report for HPV, I'll post on a separate link.

There is a link on donfoo's beat down page for a study done in 2010 with percentages and lots of info don't know if I can link it here so I won't I will private message it to you. Ken

Does it contain the same info he was inquiring about..Prognosis for smoking/drinking vs HPV 16 positive?

On the OCF new there are many articles about HPV and all kinds of studies. Here is one example of an article that I think would be helpful.

HPV better survival

There you go Don, the link ChristineB posted says HPV negative patients who didn't have the virus were 3x (2.9) more likely to die than those with the virus.

I'm going to toss my story into this thread. I'm a non-smoker, non-drinker, HPV negative patient with no recurrence 4-1/2 years out from end of treatment. Of course, I don't fit any of the statistical models.

Yes, we do go to Vandy & they are wonderful. Our ENT surgeon, who we will be seeing in April for first endoscope post treatment. She was the first doctor we saw there & she sent us to the other doc since she said their protocol was to try chemo/radiation before doing any kind of surgery (other than oral surgery for teeth removal)
Danny did 16 chemo treatments of Taxol & Carpolatin followed by 35 radiations. We are now 4 weeks post treatment & things are looking good. We love our treatment center :-)

There are a few of us here and hopefully we stay that way Margaret! I do also think that since the demographics are changing the stats will eventually as well. Since traditionally its been elderly drinkers, and smokers, that suffer this disease health for them is usually compromised, and their willingness to stop smoking and drinking also comes into play so this all feeds the statistics. Hugs

Hi! I had radical neck doc remove one 3.5 cm node +2nd robotic doc remove primary bot same surgery day. 5 weeks post op. Now awaiting 6weeks radiation at 60 g??? + 6 sessions carboplatin. Oncologist states No side effects from this drug due to anti nausea first and the 6 sessions vs. Erbitux or Cisplatin which he does not use? I hardly believe the No Side Effects?? What's the truth?? I had clean margins and only one node and no extrcapsular spread. Another oncologist told me he would do radiation alone?? Oh yes, HPV+16! Recent PET scan negative except one suspicious node same area which the radiation will get. Thanks! Mark Cohen in LA treated completely at UCLA

No such thing. All drugs have side effects. Carboplatin may have less side effects than cisplatin, but not as effective, close, and a good alternative for some. Good luck with everything.

[quote=PaulB]No such thing. All drugs have side effects. Carboplatin may have less side effects than cisplatin, but not as effective, close, and a good alternative for some. Good luck with everything. [/quote]Hey Paul, Do you have any links to vetted trails or papers demonstrating the efficacy of the main chemo drugs: Cisplatin, Carboplatin, Erbitux (cetuximab) and also the number and degree of side effects?

It seems cisplatin is the most effective but has more side effects. Carboplatin seems the second choice and is still platium based while Erbitux is used as a third resort.

My MO has be scheduled during concurrent chemo-radiation to receive weekly carboplatin rather than cisplatin. On on hand I am OK with that as that maybe means less side effects but also may be not as fully as effective as going with cisplatin.

One reason you are probably having carboplatin is because you are having cisplatin with IC, so there is risk you can become resistant to the cisplatin or may be less effective.

True. I was also thinking that there may be concern with excessive dosing of cisplatin and probability of side effects such as hearing loss and long term tinnitus increase to warrant something else but carbo is still platinum based so not sure how much it helps in reality.

Questions will be asked to both RO and MO about the chemo interaction with the rads beyond the basic radio sensitivity improving performance of rads.

I have time so I guess I will go hunt down the articles and trials myself. Arf Arf
don

Yes, toxicities is another factor. Carboplatin works differently on the DNA, than Cisplatin does, but I don't have any trials or info handy with the three drug regimens with all that info or comparisons side by side. Seems most info are scattered about, not cut & dry with different type cancers, drug regimines, radiation or not, etc. If I come across any, I'll let you know.

Here is some info for Induction Chemo, with concurrent cemoradiation with carboplatin, which you may have seen, but has adverse toxicities side by side with TPF vs PF

http://www.hopkinsmedicine.org/otol...20diagnosis%20induction%20with%20TPF.pdf

Here is another study with Cisplatin vv Carboplatin for nasopharyngeal cancer, that lists sdvese effects in both.

http://www.ncbi.nlm.nih.gov/pubmed/17467265

Cisplatin vs Carboplatin HNC:

http://www.medscape.com/viewarticle/708054_6

Doesn't seem like you have much of a choice. Dr already said carboplatin, you already had TPF IC, Taxotere, Cisplatin and 5-FU, and they say Erbitux is not recommended to be used outside clinical trials for initial treatment, although anything can be used outside clinical trials.

Hi Paul,
Thanks for the links.

JH link
PF vs TPF study. posner
Read this one earlier.

NCBI link
Interesting as it recommends carbo over cisplatin due to improved overall survival rate I surmise. This trial was for NPC patients, not laryngeal, and also was conducted using a 3 week infusion cycle. The treatment plan from my MO schedules weekly lower fractionalized dosage, same total, in the plan as he is quite focused on both outcome and reducing side effects.

Cisplatin vs carboplatin completion rates 42% vs 70%, yet overall survival rates 77.7% and 79.2%. This seems quite astounding that there can be that much drop out in cisplatin yet less than 2% overall difference in efficacy. Makes me think new trials conducted on dosage reduction in HPV+ regimens will likely allow reduction from standard of care 70 grays. I know another patient who went to 60grays during current chemo-radidation phase.

MS link
http://www.medscape.com/viewarticle/708054_5
This page (previous) covers this a bit more broadly.

I think I will ask both the RO and MO on my next visits and also at possible second tumor board as I believe my case may go again before finalizing the concurrent chemo-radiation treatment, if weekly dosing of cisplatin might be a better option, especially if my experience so far with cisplatin induction chemo is a reliable indicator for the concurrent phase and it is fractionalized to weekly infusion. I had no nausea or vomitting to speak of so far during induction TPF but this is at least in part due to the 4 cycle fractionalization rather than more common 3 cycle dosing.

Don

Completion of treatment (full compliance) is a factor in the success of any treatemt, so this has to be weighed. Here is a link for Weekly vs three large Cisplatin infusions. I also read elsewhere, but older material, that weekly smaller infusions was equivalent in having radiation alone, but this study may show not much difference, if not better outcome, although they say not significant. Also interesting was the weekly lower dose infusions had more mucosictis than the larger doses.

http://apocpcontrol.com/paper_file/issue_abs/Volume12_No5/1185-88%20c%204.1%20Fatih%20Kose.pdf

This study was heavily biased toward smoking related HNC and as we know HPV16+ has very different response with standard of care regimen.

Group A: weekly cycle cisplatin
Group B: 3 week cycle cisplatin

Cigarette smokers
Group A 25 (80%); Group B 18 (78%); Overall: 43 (78%)

Also, very low percentage had induction so another major variation at least in comparing my profile;

Neoadjuvant chemo
Group A: 8 (25%); Group B: 5 (17%); Overall: 12 (22%)

Both figures show the weekly regime offers better outcomes:
1) Predicted Survival for Patients Treated
with Weekly Cisplatin (group A) versus the Standard
Regimen (group B)
2) Predicted Time to Local Relapse (TTloR)
for Patients Treated with Weekly Cisplatin (group A)
versus the Standard Regimen (group B)

I will try to find some trail results later today but so far the weekly regimen seems fine.

Thanks
Don