An introduction

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Hello all-

 

My wife, who is a 36 year old mother, has been recently diagnosed with Squamous Cell Carcinoma of the left tonsil with lymph node involvement. She has had a CT scan a PET scan, needle biopsy, and blood work done.  On December 12 we went to Stanford to see their tumor board. The official results are T2 N2B M0 SCC. 

Here are the condensed events of our long day:

When we first arrived the surgeon seemed to believe she was a candidate for surgery. We ran the gamut of doctors, nurses, assistants, and folks looking to sign her up for trials. They scoped her sinuses and felt around her neck and glands.

The board got together to discuss their findings and came back to us with their ideas. They felt surgery was probably not an option since she would most likely need rad and chemo anyways. The radiation schedule would entail a short term move to the area since we live 2.5 hours away. We have two teenage daughters in school, with swimming and water polo. Additionally we have a number of pets so this already poses a difficulty (which we can most likely overcome, it will just be very difficult to coordinate).

 

The plan-

6-8 weeks of ½ hour radiation M-F with a total of three doses of Cisplatin. After hearing the side effects of these treatments my wife and I are terrified. My wife was offered participation in a study-

“RTOG 1016: Phase III Trial of Radiotherapy Plus Cetuximab versus Chemoradiotherapy in HPV-Associated Oropharynx Cancer”

We are unsure of the HPV status so another needle biopsy was done, results should be here by Dec. 20th. These results may change the treatment options, if negative, surgery may be an option.

Unfortunately we did not have a “main contact” during this, so ultimately we left with more questions than answers.  On the following day, Dec. 13th, we met with her local physician to discuss the experience.  The result of this was that her doctor is going to contact Stanford to:

1. See if we can get a single point of contact doctor

2. Answer some of the questions we came away with

Additionally, we are attempting to get a second opinion from UCSF.

 

So- we have since been doing as much research as possible to alleviate some of the fears and anxiety but still have many questions. Some of the many questions we have-

1)      Has anyone here ever used or tried natural cures such as Gerson or Hoxsey therapies?

2)      Has anyone here been able to do self-healing of any kind in regards to their tumor? Diet etc?

On advice from her doctor she has been juicing and taking all natural supplements, as well as all organic foods for us all. We have also removed any plastics in our kitchen.

 

3)      Is there a typical aggressiveness/spread rate with these types of tumors?

 

I asked several times about the aggressiveness of her tumor but did not get an answer. The surgeon said there was a healthy argument between physicians as to the stage, it was agreed to be a strong stage one/weak stage two, but they went with Stage 2 for the diagnosis.

 

4)      Are the side effects, salivary gland loss, loss of taste, loss of swallowing ability, hearing loss, as well as getting more cancer!, common, or do the doctors present worst case scenarios?

 

I know we have more questions, but this is probably enough for the introduction. There is some awesome information and support here so I thought this forum would be the best place to jump into the world of cancer fighters and survivors.

We are pleased to meet you, but wish we didn’t have to, as I am sure you understand.

Comments

  • hwt
    hwt Member Posts: 2,328 Member
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    Welcome

    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?  

  • jessmiester
    jessmiester Member Posts: 5
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    hwt said:

    Welcome

    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?  

    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!

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Welcome to the club....

    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....Laughing.  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.

     

  • phrannie51
    phrannie51 Member Posts: 4,716
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    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!

    Being completely healthy

    "except for having cancer" seems to be a common story here.  I hadn't missed a day of work in 26 years....till this.  No colds, no flu, nothing....

    I'm with you, stick with the big cancer center.....they see this stuff every single day of the week....and since they are only 2 1/2 hours away, you'll be able to go home on the weekends.....

    p

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
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    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

    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.

  • KTeacher
    KTeacher Member Posts: 1,103 Member
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    2 1/2 hours

    I head back to Stanford tomorrow for follow up MRI.  I am also 2 1/2 hours away.  Do you happen to live in Merced/Atwater area?  I had my surgeries at Stanford but radiation locally (Dr. was trained at Stanford).  I am surprised that the onc nurse didn't make sure that you had her number.  There is a nurse that will field questions and make sure doctor gets information.  Start with the Superthread, it answers a lot of questions that you might have.  Stay in contact.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Hi Jess

    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

  • Steve5
    Steve5 Member Posts: 147
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    In the same boat

     

    Hi, my name is Steve, I am in the same boat as you just sitting in the front of the boat at the moment - I woke up Oct 14th and found a lump on the side of my left neck, that morning I saw my family physician, she got me a CT the next day and an appointment with and EN&T the 16th.  He scoped and biopsied and on the 18th called me to say if was SCC of the tonsil and two lymph nodes on the same side.  PET/CT confirmed localized stage 4.  It manifests itself this way alot, as many here can tell you - on the 22nd the EN&T got me an appointment with Johns Hopkins Head and Neck specialists.  The doc reviewed the CT looked and biopsided the cancerous tonsil and told me "you have a very curable cancer."  My wife and I needed some time after that before he could continue.  That was the good part, next was how the treatment would go and how the rad oncol was going to beat me up before it was all over, but that I would get through this. Like P said it was 4-6 weeks before my treatments started, the doc told me this did not spread and was slow to change if at all in that time in their experience treating.  I am 14 treatments of radiation in and 3 chemo, my chemo is cisplatin but it is 40 not the 130, so I get chemo every Wed in between the rad since the chemo heightens the effects of radiation.  I have 21 more radiation treatments that should end Jan 16th along with the chemo that week.  The 40 weekly is supposed to be easier on the body and side effects of chemo, perhaps something to look into.  My radiation is 2 Gy per day and lasts less than 10 minutes.  Side effects so far are loss of taste and hence some loss of appetite, sore throat and mouth which makes it painful to swallow, but the veterans here will instruct you as well as your team for treatment about "stay ahead of nausea, stay ahead of pain, hydrate, hydrate, hydrate".  I am a guy who has always eaten and loves food at 6' 3" and  260 lbs and I was active  and healthy like others will tell you here, working out, working in the yard and not one for sitting around espcially with 4 boys age 22 to 9.  My drive is 1.5-2 hrs one way for treatment so its about 4 hours per day, on chemo day it is all day at the rad/oncol location so I can walk down the hall for rad treatments.  I have family support and support from my boss and I have a new life line, a new set of friends, a new set of people who defy and redefine the words friendship, compassion, help, being there for you, love and care and words cannot describe what they are made of and what they will do for you and that is the people on this network.  They have been there for me already since the start, they have let me lean and hold on and ask for help and cry out to them and they answer, they pave the way and have paved the way and they help me everyday to get through and to try to understand and give back when I can.  Lean on them, ask them, talk with them, don't hold back they are wonderful, absolutely wonderful.    Your team that will work with you for treatment should also be nothing short of and I believe and hope and pray that they are and will be.   As you can see they have already allowed me to go and write like I do because it helps so much to do so - I am just a rookie at this and almost in the middle.

    It helped enormously to get help from all of these wonderful people to prepare, although you cannot really prepare it helps to know more, educate yourself and get ready.

    God Bless and please stay in touch with the wonderful group here.

    Steve

  • donfoo
    donfoo Member Posts: 1,773 Member
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    welcome

    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.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    Jess, I have nothing to add

    Jess, I have nothing to add but wanted to welcome you to our club.  I wish you didn't have to be here but you will be very glad you found us.  people here have traveled the road your wife is about to travel so they have lots of great info to help you with the journey.  someone will always be here to answer questions and give suggestions for getting thru tx (info given from their own experience).  Maybe your wife will want to join us here also.  If so, we'd love to have her.  If she doesn't feel up to it, that's ok too, we have many caregivers on here and the patient just stays on the sidelines.  anyway, welcome and please come here as often as you want and feel free to ask any question, no question is off limits.  Two very important things to remember is to KEEP SWALLOWING so she doesn't lose the ability to do so, and HYDRATE, HYDRATE, HYDRATE!  also, tell her to eat as much as she can now and try to gain some weight b/c she will probably lose it thru tx.  Praying for you and your wife.  Have a Merry Christmas and tx will start b4 u know it.

    God bless you,

    dj

  • jessmiester
    jessmiester Member Posts: 5
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    donfoo said:

    welcome

    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.

    Thank you all

    Even before the official diagnosis, when we had strong suspicions, I found this site looking for answers. I had hoped I wouldn’t be back, but we are and grateful for the knowledge and support here.  The Superthread is awesome! There is so much great information gathered there that will definitely help us to ask more informed questions if we are able to get the second opinion at UCSF or when we return to Stanford.

    KTeacher, we are only about an hour north of Merced. No one at Stanford talked to us about the possibility of the actual treatments closer to home (that I remember). The rad doc really seemed to want us there for treatment. Of course, there was a gentleman in the room during our rad treatment talk who wanted us to participate in the trial in my original post, so that may have had something to do with treatment there.

    As of yet, we are waiting to hear about the HPV status, which may change the surgery option. The motivation behind looking at surgery is this:

    Because of the side effects and possible long term consequences of radiation and chemotherapy, our logic is there should be less radiation and chemotherapy if the tumor mass was reduced through surgery. Not being a doctor, this may be too simple of a thought process.

    Thanks for the input on alternative therapies. It is difficult to navigate through the snake oil sellers. I think we are just going to focus on super nutrition and the recommended supplements until we get the second opinion.

    I think one of the (many) difficulties we are having is how rushed we felt during our visit. In retrospect, it may be (fingers crossed) that my wife’s case is not super challenging to them, so they didn’t feel the need to get too in depth. Or maybe it just happened to be somewhat disorganized on that particular day.

    At any rate, my wife did read all your replies and was very grateful for the good thoughts and great insight. She was exhausted from having to break the news to everyone at work, Christmas, etc.  but I will get her on here soon to say hi! Fortunately she is very strong and stubborn so I have no doubt she will make it through this. I am Damon and she is Jessica.

    Thanks again and we will keep updating as things progress.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Thank you all

    Even before the official diagnosis, when we had strong suspicions, I found this site looking for answers. I had hoped I wouldn’t be back, but we are and grateful for the knowledge and support here.  The Superthread is awesome! There is so much great information gathered there that will definitely help us to ask more informed questions if we are able to get the second opinion at UCSF or when we return to Stanford.

    KTeacher, we are only about an hour north of Merced. No one at Stanford talked to us about the possibility of the actual treatments closer to home (that I remember). The rad doc really seemed to want us there for treatment. Of course, there was a gentleman in the room during our rad treatment talk who wanted us to participate in the trial in my original post, so that may have had something to do with treatment there.

    As of yet, we are waiting to hear about the HPV status, which may change the surgery option. The motivation behind looking at surgery is this:

    Because of the side effects and possible long term consequences of radiation and chemotherapy, our logic is there should be less radiation and chemotherapy if the tumor mass was reduced through surgery. Not being a doctor, this may be too simple of a thought process.

    Thanks for the input on alternative therapies. It is difficult to navigate through the snake oil sellers. I think we are just going to focus on super nutrition and the recommended supplements until we get the second opinion.

    I think one of the (many) difficulties we are having is how rushed we felt during our visit. In retrospect, it may be (fingers crossed) that my wife’s case is not super challenging to them, so they didn’t feel the need to get too in depth. Or maybe it just happened to be somewhat disorganized on that particular day.

    At any rate, my wife did read all your replies and was very grateful for the good thoughts and great insight. She was exhausted from having to break the news to everyone at work, Christmas, etc.  but I will get her on here soon to say hi! Fortunately she is very strong and stubborn so I have no doubt she will make it through this. I am Damon and she is Jessica.

    Thanks again and we will keep updating as things progress.

    The option to do surgery first...

    or to do a wait and see after rads and chemo, seems to be about 50/50....like what a partcular Dr. likes to do it.  I have seen many on here who have had surgery first, like getting those lymph nodes out, and possibly tonsils....THEN wait for healing, and onto rads and chemo.  On the other hand, I've seen many (like myself) where the RO,Oncologist. and ENT decide to wait and see what happens with the rads and chemo....if the lymph nodes disappear, and the tumor disappears.....then no surgery....I ended up with no surgery.  I'm trying to think of anyone who had less chemo treatments, or less rads because they had surgery first....I can't think of anyone off hand.  There are usually 28 to 35 rad treatments, and 3 chemos (if given every 3 weeks), or one time weekly....depending on the Dr. and how well the patient handles the chemo.

    Heads up on the supplements.  I was told to drop them all during treatment....especially antioxidents.  It was explained to me this way....they do help cell memory for rejuvenation.....but they also help bad cells rejuvenate, the chemo sets the cancer cell up for anniliation by the radiation.....and antioxidents make it harder to anniliate the cancer cells.  Anyway, ask the Drs. before taking any supplements.

     

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    welcome to H&N Land

     

    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
    KTeacher Member Posts: 1,103 Member
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    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.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    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.

    I was another one who had

    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