An introduction

Sorry you and your wife had the need to search us out but glad you found us. I can already see what a wonderful support you will be for your wife as you make this journey together. Chemo and rads can be scary but doable. I guess my first question is: do you have a local facility that could administer the radiation/Cisplatin that are recommended?  

nobody wants to join....but, I will tell you that you have found the best group on the internet....there is a lot of smart people here, great support, and empathy....we've all either been patients or care-givers.  You are right at the beginning where questions outnumber answers about 2 to 1....we've all been there, and a number of folks here went to Stanford for treatment.  Your wife caught this quick...really...most folks are Stage III or IV before it's caught, so that is GOOD!!

To your first question.....stay away...FAR away from "natural cures".  I can see going there as a last resort, but only a last resort....right now the "tried and true" forms of treatment are the way to go.  These are proven treatments.....those others are not.  The same goes with "self-healing"....it's a hell of a risk to take when you are in a battle for your life.  Do self-healing when somebody has the flu, or a cold....and see if it works.....Juicing, smoothies, organic foods, general diet are ALL good now, during treatment, and afterwards....as a matter of fact, tell her to eat all she can.....all she wants now, as eating can get dicy once treatment starts.

SCC is normally a slow growing cancer.....good thing, as it can take weeks for the Drs. to get all their ducks in a row working out a treatment plan.  I was diagnosed on March 5th, 2012, and my first treatment was on April 26th, so several weeks passed before the show got on the road.  This is not at all unusual, so don't feel panicy when you don't think things are moving fast enough.....it is a big project getting every thing set up.....and they will probably want to start radiation and chemo on the same day, or darn close.  As for the differences between Erbitux (Cetuximab)....several people here have had Erbitux instead of Cisplatin, and they can tell  you about it....I had 3 Cisplatin treatments during 35 rads....(and then had 3 more along with another Chemo called 5FU) after radiation was over.  The only after effect I've had with the Cisplatin is neuropathy in my fingers and feet....but it doesn't really bother me much...

The side effects of radiation during treatment do include some of what you listed....the loss of saliva and taste....most people do not lose the ability to swallow (altho the throat can get pretty painful, and people don't want to swallow)....I had a PEG tube (feeding tube put in before I even started treatment), but I never used it once during radiation....didn't use it until I had adjuvant chemo.  Within 3 weeks of the last treatment I was eating soup, and begging for them to take the damn thing out!  Saliva starts coming back slowly after treatment is over....I have about 50% of mine back, and about 60 or 70% of my taste back.  It isn't as awful as it sounds....I've just adjusted to having water by my side most of the time.

Some Drs. offer up the worst possible scenerio's....others don't.  The Oncologist was more into telling me the worst case scenerio than either my Rad Dr. or my ENT....none of the worst case every happened to me.  I only lost 16 lbs during treatment, which is a drop in the bucket  compared to many folks here....but I started out at 97 lbs, so I was still pretty skinny at the end of treatment.

Now I'm going to tell you something that a member from this board told me when I first got here....."This is a bump in the road of life....you've hit some gravel, but in a short time, you'll be sailing on pavement again.  BELIEVE!!" There are many, many survivors here.....not only survived the disease but the treatment too.....  You wife is going to get through this, and you and the kids are too.....pull together, and fight this as a family.  It ain't easy, but it's doable....and amazingly it goes way faster than you would think.

p

PS....the top thread on this group is the Superthread.............answers all the practical questions....like what lotions and potions, what to eat, what is radiation like.....it is full of information.  Plus, someone is ALWAYS here.....you cannot ask any question that will not be answered, and answered quickly.

jessmiester said:

Local treatment

Thank you. We do have local treatment options, but we have been advised by both local doctors and local patients that the level of expertise at Stanford is leaps and bounds above what is available here. The "underground cancer society" is amazing, we suddenly are meeting people left and right who are survivors or have an intimate connection with cancer. That being said, we have heard some scary stories about local treatment.

 

The biggest fear in regards to treatment is the unknown. There seems to be no way to calculate how she will be effected by chemo and rad. It is sad because she is otherwise completely healthy, she has only had one cold in the last year!

Welcome, sorry you had to find this group but you will be so glad you did. The knowledge and support you will find here is amazing. I am a little over 1 year out of treatment for Stage IV unknown primary HPV + squamous cell carcinoma found in what they originally thought was a branchial cleft cyst on the right side of my neck. MRI and Pet Scan clear before treatment but as a precaution I did 35 radiation and 3 rounds of Cisplatin. It is tough but doable. I read everything I could here and asked questions and prepared myself for the very worse and was happy when I seemed to get thru without the "worse". I never had any vomiting from the Chemo, nausea but no vomiting. I ate thru my whole treatment, sometimes not very much but something every day. I had a port and feeding tube inserted before I started treatment, though I was very set against the feeding tube, I was so glad to have it when it just became too painful and exhausting to eat. Ask away with the questions and you will get answers. I will be praying for you both.

I can't argue with any of the points raised above.  I also had a long distance to travel for optimal care, 350 miles.  This was true with my first SCC in 1998, with my second SCC in 2010, and with my third SCC in 2011.  I have put well over 50k on my car chasing treatment, and I don't regret the time or inconvenience one bit.  My wife and I rented a house and moved to the treatment citty for about 4 months with my chemorads in 2011-12.  It was a royal PIA, but I could not have gotten the quality of care here that I got there.   You only get a chance or two to get this  right, so I wouldn't let distance put me off, no matter what.....

A word or two on her treatment.  It sounds from your description like she have a small primary, and nodes as well.  Surgery plus chemorads as a planned first treatment, doesn't make a lot of sense to me.  She can get treatment for both the primary and the nodes with chemorads, and  save a selective neck disection for later, in case the nodes don't resolve.  That would be the most common approach in 2013, while it was not the preferred treatment when  I had my first malignancy in 1998.

Anyway, just my two cents. Welcome to the board. 

Pat

Hi Jessie,

Welcome to CSN. Hang here for great support. Both Stanford and UCSF are top tier centers. Given you have two teenagers does make travel to treatment more problematic. It all depends on how much local support you have to hold down the fort. By the time you get treatments going, kids will be back in school.

Radiation treatment can be very tough but the majority of folks can get to treatment on their own, maybe not every day depending on side effects from chemo but rads along do not cause as much difficulty to make the trip, assumming it is not too far. I'll assume you stay pretty close to the facility. Find one that even offers short shuttles around.

I'm not that far from UCSF and Stanford but found comfort in facilities in the East Bay. The key thing is trust in your doctors. Fortunately, things just lined up that I had great doctors. I attended tumor board and that gave me incredible confidence that all those experts were offering the best advice I could get anywhere. Mind you, my cancer was fairly standard as is the diagnosis your wife has.

Some are of the mind that the diagnosis and treatment planning is best done at a CCC while the actual treatments can be done at a facility more local to you. My own opinion is that is nearly just as good. Both the chemo and rads are administered not by doctors but technicians and nurses. So you are not directly benefiting from the doctors expertise. You can likely check in periodically with the team at Stanford during the treatments but might be able to keep your home life a bit more stable. I just throw this out there as it is viable and effective and for those who have other factors to consider it is something to at least think about.

Some are able to continue to work through at least some time during treatment; some amazingly work the whole time. Committments and finances might also influence if it might be better for you to stay local during treatments.

Just think through your options. It is especially hard when you get hit with this but you have time to make the best decision for you and your family. As has been stated here, SCC is slow growing and a week or two is NOT going to change the outcomes.

As to all the natural and alternative therapies - They are NOT a substitute for science based treatments, period. Steve Jobs lamented that he made a mistake trying to beat his cancer using alternative approaches. He felt if he had not lost that time he would have survived. At best, one might use alternative therapies in conjunction with standard approved methods.

jessmiester,

Welcome to the H&N forum, so sorry your wife and you are here.   I see you have had a nice volley of questions and answers already.

As said, this trip is doable.  You never know exactly how tough it will be until you are in the middle of it.  Somewhere around the first part of the year this will be behind you.

I opted for the surgery, radiation and Erbitux and so far so good.  Whatever treatment plan you end up with, it will be right for her and it will kick cancer’s butt to the curb.

Keep the faith, she will do great.

Matt

P.S.  I heard the words "you have cancer" on December 23, 2011.

KTeacher said:

Modesto or Stockton

Having teens at home I would rather be at home for treatment, unless you have wonderful relatives and/or friends at home.  You should be able to have quality treatment in Modesto or Stockton.  My radiologist in Merced was trained at Stanford so I felt very comfortable going to him.  He was in contact with Stanford while planning my treatment.

I happen to be someone who had surgery first and then radiation, radiation treatment was not any less than not having surgery.  If you are concerned about the saliva situation, some of us have had Amifostine.  A shot in the tummy 20 to 30 minutes before radiation treatment.  You are carefully monitored during that time.  I didn't have the thick mucus problem and my saliva returned 75=80%.  Unfortunatly, I have also had many mets.  I couldn't tolerate the Amifostine the second time around and did have a salivary gland removed with lymph nodes.  I had more mucus problems that time but probably recovered salivary function about 75%.  I won't continue with the rest of my story.  Just had great news after fighting this beast since 2010.  Try to enjoy some time together this holiday season.  You are in for a rough ride but you will get through it.

Amifostine (ethyol) during treatment.....tho they gave it to me via an IV through my port.  It's suppose to protect the saliva glands.....I don't know if it did much for mine, but the one thing (like Bev (KTeacher), and John (Skiffin).....none of us suffered through the thick mucous that rads seem to create.  As far as I'm concerned, that was great....I have about 50% of my saliva back, which is good enough to eat with as long as I have water by my elbow, or whatever I'm eating has plenty of gravy or sauce.

p