Need info on suggested treatment - Base of tongue - 1 lymph node - Stage III

jtl said:

There are certainly lots of
There are certainly lots of options but in my totally unprofessional opinion I think some RT/chemo/biological is still a safe bet. Like my rad onc likes to say, I kill what you can't see, I guess the same could be said for the med onc. I am not sure about scchn not spreading after removing the suspect nodes. Having said that, many years ago I had melanoma on my foot. It scared the crap out of the docs, they removed it and surrounding tissue to get good margins and also took out all of the lymph nodes in my groin on that side. No chemo, no rads and it never came back. Someone like Pat would know a lot more than me so maybe he will chime in.
John

jtl said:

There are certainly lots of
There are certainly lots of options but in my totally unprofessional opinion I think some RT/chemo/biological is still a safe bet. Like my rad onc likes to say, I kill what you can't see, I guess the same could be said for the med onc. I am not sure about scchn not spreading after removing the suspect nodes. Having said that, many years ago I had melanoma on my foot. It scared the crap out of the docs, they removed it and surrounding tissue to get good margins and also took out all of the lymph nodes in my groin on that side. No chemo, no rads and it never came back. Someone like Pat would know a lot more than me so maybe he will chime in.
John

Tim6003 said:

Surgery - Ratface and all the other
Ratface...thank youfor stepping out and "telling me your opinion". I realize this is a support board and we all want to be ecouraging but too I am the type that likes to chew on the meat even if it is tough sometimes (I live in Idaho, so you will have to forgive the things I say at times )

I'm very mucy like you. I have a wife and five kids (kids are ages 21 months to 13 years old) and 1 in 4 is not something I think I want chance. Before you post I had just made an appt with my ENT in Boise to discuss just such an operation. I will see how he responds, but I'm sure his suggestion will be against it. Mine is for.

I will say this to be clear. The MSTI Clinic here in Boise (Mountain State Tumor Institute) has been wonderful. My ENT (I asked this of the scheduler today)who is cordial, sees 50 - 70 patients A DAY!!! Wow. That's crazy. He comes highly recommened in our area is why I chose him...but like I told my wife ..."honey, that's just too many patients to give me the attention I want right now"...and that's not to fault him, it's just my comfort level personally.

So thanks all for your comments. Ratface...thanks for stepping out there for me. I can't say it enough ...but this board and all of you who share make a great difference!!

Thanks!

HelpingDad said:

Treatment Options
Hi Tim - I look forward to hearing the results of your PET scan.

I've been reviewing some of the support cases to learn more about the side effects of Erbitux. I am providing care to my 79 yr old father who has Stage IV SCC H&N that is theorized to have initiated with HPV (he has never been specifically tested). His initial tumor was on his tongue and was originally diagnosed as benign in 2007. I recurred in 2008, still benign and again Jun 2009 when SCC was detected with SCC detected in 6 of 25 cells extracted from lymph and thyroid nodules. Each time, dad had the growth surgically removed. After SCC discovery, chemo and rad were recommended. But Dad elected to roll the dice since, due to the large amount of metal in his teeth, they were going to pull them for the rad. He didn't want that quality of life.

Dad's Treatment Phase 1: Radical Neck Dissection (Surgery)

By Nov 2009, tumors began appearing in his neck and thyroid and growing quite rapidly. In Dec 2009, Dad underwent his first radical neck dissection with ENT recommendation to begin chemo/rad. At Feb 2010 follow-up, he declines treatment again. By Jun 2011, SCC tumors recur in the neck. In Aug 2011, had second radical lymph nodes dissection in his neck, but tumors now in 2 places of his chest.

Though Dad now planned to do recommended chemo treatment, he procrastinated too long and tumors in neck return. He attempts to get surgery, they tell him chemo is his only chance. So, he finally starts chemo in Dec 2011.

This procrastination may seem strange to many of you, but my father had just decided he'd prefer to die. Unfortunately, he learned that the quality of life dying of SCC is not much better than the treatments for it...

----> Point 1: *surgery* alone may be too risky ----

Dad's Treatment Phase 2: Taxotere and Carboplatin (6 planned, one every 3 weeks)
Dad still not up for radiation due to fear of losing his teeth. Plus, due to SCC spread to chest and near arm pit, Med Onc indicates that treating chemo for now is best approach. (having read more on this site how, not sure I agree in retrospect).

Dad faired okay for the first 3 infusions. Though, he was mostly bed-ridden and for periods was prone to blacking out and falling (due to dehydration). Fortunately, no serious injuries. The tumors had really been knocked down with no signs in the neck and chest. The large one near his armpit, though, seemed unphased. During the 4th and 5th, the peripheral neuropathy started hitting him hard. His legs were unsteady/wobbly, so he resisted walking and started using a rolling chair to get to his bathroom. He also had more issues with his stomach - complaining of motility issues in addition to lack of appetite, diminished taste, and feeling full. So, he (and I agreed) refused the 6th round feeling encouraged that if necessary, surgery or radiation would resolve the remaining tumor.

Two weeks following his scheduled 6th round, tumors in the neck came back with a vengeance. The med onc indicated that the cancer had likely become resistant to the drugs and skipping the last infusion would not have changed the outcome.

One pertinent conversation we had with the med onc was whether dad should have surgery again to remove the tumors before starting the next treatment. Logic would suggest that less cancer cells would mean better/faster results with the drugs (less work to do). But, the med onc says that 'theory' is just that. He offers that this is the most challenging part of cancer research - theories often don't pan out in clinical studies. That in fact, clinical studies indicate that surgery does not help the results of a follow up drug therapy. Interesting...

----> Point 2: Surgery before drug treatments may not make any difference

----> Point 3: platinum chemo drugs have huge side effects and, at best (from other postings I've read), gain patient additional time, but cancer may not be eradicated ----

Dad's Treatment Phase 3: Radiation (5xweek, 5-7 wks) with Erbitux (weekly)

With the results of two phases of treatment, I start researching more and trusting less. When I read about Erbitux, I got very excited and hopeful that Dad can tolerate this treatment better. The side effects sound as though they will be less toxic to his body. [I'm still worried whether Dad will regain his motor skills (since dancing and bowling are what motivates him).] I'm encouraged by the first visit with the Rad Onc, he feels that since there are no tongue or mouth tumors, he can avoid the damage to the teeth and mouth. He will be using VMAT rad technology. This seems better than IRMT, but perhaps more invasive than Photon, but I could not find any definitive indicated that Photon was better than VMAT. I am guessing that since Dad's original Rad appointment in 2009, targeted treatment in this area has greatly improved.

Dad had his first Erbitux infusion this past Thr and it has already inhibited the growth of the tumors (if not actually reduced their size) - at least from what is humanly visible. So far, no side effects - but not sure how long before they start - will need to do more research and continue to seek info from other postings.

----> Point 4: As one other poster commented, Erbitux may be becoming the gold standard for H&N SCC treatment. I'm hopeful this is the case.

----> Point 5: You may have been lucky not to have had to go through treatments 1 and 2...

Best wishes to you!
-Laura

Tim6003 said:

Hi Laura ...re: Your Father
Hi Laura,

Let me first start by saying I am amazed by the description of your father. He just sounds like a tough and practical man! He apparently is also very fortunate to have you on his team.

Obviously I can only give my experience and opinion, and you sound as if you have a solid team of doctors who you are watching closely

I did only have Erbitux ...and I did have a severe reaction to it in the way of an acne like rash that went from the top of my head to the lower part of my back...quite pronounced and it was painful, but not a pain of level 7 or above. To make you feel better, that was my only reaction and the doctor quite frankly said mine was one of the worst he has ever seen, most have a much milder reaction to the Erbitux.

Also, I am blessed (I tell my friends it's an answer to prayer) that the radiation and Erbitux did the job. My PET Scan May 7th revealed NO CANCER! NO CANCER!

So Luara, you sound like you have a great handle on this and I know there is sooooo much iformation to digest, I think you will do great!

The recovery from radiation is tough, no doubt about it. But if your dad is bowling at 79.....I'm just wish he lived closer to me because I declare I would love to meet that man and bowl a game with him. Wow.

If you don't mind, I will add your dad and you to my nightly prayers. And I said one for you before I finished typing this post.

I don't know how to PM somebody on this board...I wil have to figure that out ....but please keep me posted on your dad.

Prayers for you Laura,

Tim & Jennifer Cogdill
timcogdill@yahoo.com
208.630.4842 cell

Laura...I forgot one thing. Feeding tube? Did you father get one or are you considering it? I must tell you the doctors strongly suggested I get one (food is health while going thru treatments) and if I did not need it, great, but if I did much better to have it in before I got in too bad of shape. Mine was truly a life saver as I lost 70 lbs!!!! I drank Ensure Plus like it was going out of style (but it does have a lot of sugar). Just wanted to ask / add that since you did not mention a feeding tube.