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Newly diagnosed...need advice.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hello everyone,
My partner of 6 years was diagnosed yesterday with metastatic squamous cell carcinoma, suspected origin left tonsil. It was the lump in his neck that was biopsied, so I am assuming that is the lymph node and malignant cells are present there. So we are looking at Stage 4. At best 3, although we have not formally been staged. We have a meeting with the doctor tomorrow. I am the note taker, question asker, and information clarifyer. Some questions I know to ask are about the doctors history of treating these cancers, PET scan, referral to a good radiation oncologist. What other questions do I ask? Do I ask about differentiaed vs. undifferentiated cancer cells? Do I ask for prognosis? My partner is going to want to know about quality of life. What about the HPV factor? I hear if there is HPV16, which tends to land in the tonsil, that could be a better scenerio. Please advise us as we take our first steps. We are very anxious.

friend of Bill
Posts: 87
Joined: Mar 2010

Hello and Welcome!

Your partner sounds like just like me 23 months ago except my right tonsil bed was the culprit. You don't know it yet but you have tapped into the mother lode of support and information at the very start of your journey. I am a 2 year cancer fighter and survivor but a newbie to this forum so I will defer to my fellow travellers and their significant others to wrestle with your excellent questions. Their input is invaluable and hard earned - wish I had found them many months before. You and your partner are in my thoughts and prayers - please know that there are many, many reasons to be hopeful and that you are not alone. Blessings and strength to you both.

Vince

naturenaw
Posts: 26
Joined: May 2009

I also had SCC of the right tonsil and it was spread to multiple lymph nodes on both sides - stage 4. I am sorry you are having to deal with this right now.

I am here today to tell you I have survived it, your partner can do it! Here's a few things you can do...
Since you seem to be a researcher, you'll want to keep in mind on the internet that much of what you see for prognosis is worst case scenario and there's lots of bad stuff out there. If for instance you don't have any of the risk factors (for example, you're not a smoker, etc.) then your prognosis may be much different than what you research. So just keep that in mind when you do your research.

I can’t really answer your questions about HPV since I don’t know about the latest info out there on that now – it’s changed much since 5 years ago when I was diagnosed. So that would be a good question to ask the doctor. I am very interested to hear what he says about this and what the latest is too on this.

As far as asking the doctor – if the staging is stage 4, it’ll most likely mean highest dose radiation so I would ask about IMRT… Look into IMRT (Intensity Modulated Radiation) instead of standard radiation. It can help save parotid glands, and aid in less dry mouth after this is all done. Although if you have some cancer in the parotid gland, they may just have to treat it harsher anyway. But it's worth asking about. If it's not available where you live (it wasn't available in our town but was available an hour away), ask where is the closest location that does have it. The reason for suggesting this is that it can help with quality of life if you can manage to have a little saliva after treatments are over. A little saliva can go a long way toward eating and swallowing and digesting and saving teeth after this is over.

Depending on where the “primary” cancer is, your partner may also need to have additional surgery. My initial biopsy of the lump in the neck was inconclusive and the surgical biopsy of it was what showed cancer but it was not the primary source of the cancer. Since my primary was not located immediately so it required more surgery – tonsillectomy, a string of enlarged lymph nodes were removed, and additional biopsies of base of tongue and in sinuses. Mine turned out to have the primary in the right tonsil and I didn’t need any further surgery, but I have heard of others having additional surgery depending on where the primary is. So you could ask the doctor if they have determined where the primary cancer is and if any further surgery is required.

Major suggestion for your partner to do right now - EAT LOTS and NOW!!! He should gain as much weight as he can BEFORE going into this process of treatments. Think GAIN GAIN!!! The process can take its toll on your ability to eat for quite a while so he should think like a bear storing up for the winter!! Perhaps this won't be an issue for him but it was for me since I am small to begin with.

If he does get a stomach tube to help with eating during recovery, he may still want to try to eat and drink on occasion and try to use those muscles so they won't "forget" how to swallow and atrophy.

Pray lots and surround yourself and your partner with people who matter the most!

Keep a sense of humor handy! Celebrate milestones too! Accept that your partner may fatigue during treatments and life will not be “normal” for some time. It can help to re-define what “normal” is and have patience with your guy as he endures the treatments.

Best wishes!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Naturenaw,
Your story is powerful and inspiring. Your suggestions I have written down and will take to the doctor. My guy will need to bulk up. I like that you enlightened me that if he is a non-smoker and a healthy guy his prognosis is better. He is so healthy, and has taken such good care of himself, I could not imagine the biopsy would come back cancer. So I know he is strong physically going in. Needles and medical stuff is neither of our strengths. I guess it is time to overcome that, right?
As far as your Stage 4...how far did your mets go? I guess chemo got it all. That sounds so hopeful. I know the road ahead will be hard. I can only begin to imagine. I have used message boards before (x husband is bipolar...message boards kept MY head above water many times).
Love hearing from people like you who have unfortunately gone through a difficult illness, but have so much to share for the rest of us at the beginning of this journey/war.
Thank you.

train-nut
Posts: 101
Joined: Jun 2008

Excellent replies to your first post...as the ad says: "priceless". My 2 cents worth: be positive, do it all on the basis that your partner will be cancer free soon "period"; stay hydrated, water is your best friend; like you I dread going to the doctor and hate needles ( I don't care that it's childish), tell your care team, I did and I'm convinced I had the best needle jockey in the place wherever I went. That reminds me, you are starting to meet some of the nicest people on earth (your care team), feel free to tell them what's on your mind, many went well out of their way to help me. I am forever grateful (and still drop by with a few dozen cookies from time to time). I wish you good health, Rich

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Your partner is fortunate to have someone such as yourself on his side, for starters. It seems that you are already getting a good handle on what needs to be done from your perspective, which is excellent. As Vince suggests in his response, many of us go into the cancer experience completely unaware of what we are facing, utterly clueless about what really matters. So: having you by his side, someone willing to do the research, gives your partner an edge from the start.

With respect to HPV and blame, please know that a whole lot of people are HPV-positve and do not have cancer, so it should be fairly clear that HPV, if it is indeed a cancer-causing agent, does not act in a vaccuum: as with most cancers, this one is cultivated by a number of factors, including environment, biology, and behavior at the very least. Besided which, blame and guilt have no meaning: it is what it is; time to move on and deal with the problem at hand.

In my humble opinion.

I would suggest that when you ask about a PET scan (or a CT scan) that you adopt a big picture approach and ask for an entire gameplan instead: will there be surgery? If not, why not? If so, why? (I prefer surgery, myself, as I am convinced the best way today to get rid of cancer is to physically remove it, but his docs might have a great explanation for avoiding surgery -- many people in this board have avoided surgery). Will there be radiation? If so, why? If not, why not? Same with chemotherapy.

If there will be radation, ask about agents that can be used post-treatment to protect against burns (in here you can read about some of them, including natural aloe, biafene, aquaphor, etc). Ask about duration (both per treatment and total).

If there will be chemotherapy, ask about the kind of chemicals to be used. Ask about duration (both per treatment and total).

Ask about medicines that can be provided to help ward off nausea. Ask about meds that can be provided to fight dry mouth, to fight yeast infections in the mouth.

There are a host of other questions that will occur over time, and others I have simply forgotten. That you are taking notes is a good first step to documenting what you learn and what you want to know. You can develop new questions from the answers you document.

In the meantime, there are certainly no good cancers, but survival rate for head/neck cancer of the squamous cell carcinoma variety is a heckuva lot better than some others, with or without the HPV factor. And most of us lead normal lives, more or less. You may read of a "new normal" following a cancer diagnosis, and I think there is much truth in that phrase. There will be challenges, to be sure, both in the short term and the long, but nothing, hopefully, that is insurmountable.

One last thing: to be a good caregiver, you must take good care of the giver. That is, be sure to make time for yourself during all of this, and be sure that your mate understands that the time you take for yourself is important to BOTH of you. Seriously.

Best wishes to you and your partner.

Take care,

Joe

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

double posted

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I am so grateful for the responses to my post. I also found 2 people at work who have partners who have recently survived cancer, one lung, the other head and neck. So I will have support on these pages, with friends and family and at work. There are blessings. I feel anxious about the meeting with the ENT tomorrow, but I am going with a list of questions that the answers will help us understand this cancer and hlep us make decisions. Again, a heart felt thank you!

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I had Stage III SCV of the right tonsil. While I smoked long ago and still drink, my doctor at Johns Hopkins said that had little or nothing to do with it: It was the HPV.
FWIW, and this comes via a doctor who's been deeply involved in the research on HPV and SCC, when I was diagnosed in July of 2008 he told me that people at my stage with HPV-derived cancer had a better than 90 percent five-year survival rate. The numbers may have changed since then, and the doc said at that time that some (then) more recent research showed the rate may be in the high 80th percentile.
Either way, at this point anyway, the treatment is the same. No one here will pull any punches: It's brutal.
That said, your partner can get through the treatment (and your help will be a great asset). And, he can beat this cancer.
Hang out here, use this board as a resource and keep us informed. There's a lot of wisdom here.

--Jim in Delaware

sportsman
Posts: 98
Joined: Feb 2010

Kimba: This will be a journey and unfortunately a very long one. I am just past the three year mark now since completing radiation and chemo for throat cancer. Yes I was a completely healthy and in great shape fifty eight year old when I was diagnosed. I thought I would beat this thing and come out on the other side just like I was. After three years out of treatment now my quality of life is still not what I expected and I have experienced many problems. Swallowing, tooth decay, not being able to gain weight or muscle mass, being cold, being tired are just some of the problems I have experienced. I went in to this not knowing anything about throat cancer and certainly not about the severity of treatment. I could go on and on about this but let me suggest this. Find out all you can, get the best doctors available to you and be prepared to fight a battle for your life. You will read many stories on this site as to how everyone is different so far as how they come out of treatment. Radiation and chemo has different effects on people. I think according to my doctor that I may have got the worst possible results. Everyday is a struggle and the thing that keeps me going is that I am here to live another day to be with my loved ones and friends. I pray that God will give you partner the strength they need to fight and survive. Fight hard and don't give up. God Bless

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

I'm 10 months out of left tonsil cancer (stage four). A couple of things come to mind for you to get set up. Get an e-mail list of all who are interested in this journey and send out on a weekly....bi-weekly notification of the steps and progression of the treatment. You won't have time or the desire to answer the same questions and stories...blah...blah..over and over on the phone. Let em know this will be the only means of communication, so you can concentrate on medicating...feeding...keeping appointments...hugging...etc, etc. Next, I'm not sure how it was done and who did it for me, but I truly get teary-eyed when I think about it,....but.....somebody got my entire neighborhood involved with us during treatment. One neighbor would leave the daily paper by the back door, one would take the garbage can to the street....one would cut grass, and somebody would water the plants. All kinds of stuff like that. Good luck and my thoughts will be with you.

Larry

Tanager75
Posts: 87
Joined: Aug 2009

You are starting a journey my spouse had to take. I second everthing others have already stated. I had Left Tonsil, 2 Lymph Nodes involved, undifferentiated Stage 4 SCC. Dx June 09 and coming up on nine months post treatment. They didn’t do surgery. My cancer team, whom the chief is a surgeon, at Virginia Mason in Seattle didn’t even suggest surgery. I didn’t know enough to ask why. He laid out the plan of the team and it included cisplaten and IMRT (very important). I went for the feeding tube and hated it but would not have done well without one. My wife kept an appointment book which is amazing to look at today. She kept everyone informed via EMAIL about progress, I got sick in a hurry with Chemo and radiation (not everyone does) and she needed to line up drivers. My neighbors, people at church all offered and we took many up on the offer. I felt and still feel very humbled by the amount of help offered by those we know. As someone said take care of yourself. I wish you both the best and keep reading this site for good information, hope and new questions.

Peace to you,

mark

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I got my bearings yesterday after signing up on this message board. I was able to talk to my partner, Mark, with strength and determination. We have done hard before...emotional hard...this will be physically hard AND emotionally hard. I appreciate all of your all too real stories and the honesty that allows me to prepare myself for this battle that lies ahead. I am already thinking in terms of life BEFORE diagnosis and life AFTER diagnosis; which I am sure will elvove into life before treatment and life after treatment. Quality of life is huge for Mark, and that is already helping us make decisions about where to be treated, even though the commute will be farther. We are outside of Philly so we are headed to the the University of Pennsylvania with thier top head and neck guy.
I will be on these boards all the time and am so grateful for the hope you all convey. I am scard and I am anxious...here we go.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Glad you found your way here....

Like Delnative, I also had pretty much the same diagnosis as he. Right tonsil (primary), a lymphnode on the same side (secondary), STG III, and HPV derived. I have never smoked or used tobacco and only drink a few beers now and then.

Basically I had nine weeks of Chemo (Cisplaten, Taxotere and 5FU (wearing a pump), then seven weeks of Carboplaten concurrent with 35 radiation exposures and Amifostine Injections).

I started January 2, 2009 and completed that treatment June 18, 2009. Everything (blood, organ functions, eyes, hearing, blood pressure and cholestral) are all back in range as of about a month ago. All my scans have been clean and if all stays that way I have my next PET in August. Then if I'm good to go, the port comes out February 2011.

Like DelNative said, it can be beat and there are plenty here that have and are continuing to beat it and survive. HPV or not, we are all in this together and as long as you are still kickin then you are surviving....

My MD professionals are all within the same organization with my ENT as the main point of contact. He is the one that set everything in motion. He removed the tonsils, did the biopsy, ordered the radiology and chemo doctors, and they all agreed on what they felt was the most aggressive treatment for the best positive outcome.

Good Luck and God Bless to you and yours, looking forward to seeing you here more often now that you found us.

John

Fire34
Posts: 353
Joined: Feb 2010

Kimba
One other thing that I did not see mentioned. If your partner doesnt like needles. I would look into a port-a cath. I had a double, meaning there were two access points. As my treatment was concurrent chemo/rad for 120 hrs with twice daily radiation. One side was for the chemo and the other for hydration blood draws. My veins pretty much disappeared after my first rounds of chemo. Again Best Wishes
Dave

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Heard about the port and also getting the feeding tube early on. Met with the general ENT today. I did not hear anything I wasn't expecting...Stage 4, 2 nodes involved, primary site suspected to be the tonsil. Told him we are heading to the big hospital in the city. He was okay with that. The aggressiveness that I think will be required will be best determined at University of Penn with the Head and Neck oncologist. I am anxious about the treatment and its brutality; Mark is anxious about the outcome. PET scares me. Hoping there is no more. Anyone out there get a 1 or higher rating on the M part of the TNM staging??

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I understand what you mean about the PET being scary. My dad was recently diagnosed with tongue cancer stage 3 or 4. I was so scared waiting to hear about the PET scan. His came back with only the tongue and 1 node. he said everything else looked great. I was so happy after I heard that I relaxed for a couple of days. It did not last now I am freaking out over the treatment and how rough it will be on him. He did not have surgery, because of the location. He will have 35 rounds of rads with Chemo once a week for 2 hours. I have faith that the treatment will work and that the rough side effects will be all worth it in the end. I am keeping you and Mark in my prayers and understand how you feel. Keep us updated.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I did mention the port above, but didn't get into detail. My port was put in a few weeks before I started chemo. It does save your veins and is something you get used to. When I had my initial nine weeks of chemo the 5FU was administered though the port. I wore a fanny pack for four days each three week cycle, the 5FU was injected 24/7.

I never really used the port for anything else other than chemo, hydration and flushing. If I were just giving blood for lab work, I had them do it from the vein. The port will sting for a few minutes each time the go in, then that goes away. I guess there is also some kind of numbing cream that they can use topically, but never had that.

I still have the port, and it should come out next February. My chemo doctor like to leave it in place for two years.

So every 6 - 8 weeks I go in to have it flushed and cleaned....

John

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

John,
Thanks for the details on the port. Did you have a feeding tube too? Both of these things seem to be very useful and set up early on. They also seem to be a little science finctiony to me too. Our eyes will be open to a new world of medical technology. At University of Penn, they have new robotic surgery. Not everyone is a candidate...but if you are it eliminates some surgical incisions...not to mention the precision. Next week involves 3 days of medical testing. Next week we will know a lot more. I hope it is best possible news from this point on.
Thanks for your knowledge and support. It helps me talk to the doctors, which helps Mark not have to.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I opted to NOT get the feeding tube but finally relented with two weeks to go because i couldn't eat anything substantial. That was 4 weeks ago and if i did not get the tube I probably would be in hospital or worse. My advice is get the feeding tube.

I did not have a cath port not pic line for chemo because i was only having 3 rounds and it did not make sense.

It's going to be hard, don't let anyone tell you different. Some have it worse, but recovery from this treatment is very slow and it will be painful. Hang in there will be about all you can offer at times.

I have a weblog on this journey and my wife Claire has been a contributor to it from the caregiver perspective. It's at http://www.justwrite.us but for the first entry (navigation can be tricky) go here http://www.justwrite.us/cgi-bin/archives/2010/02/day_0_prologue.html and then you can move through the days easier.

Best,

Mick

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Kimba- the Port will likely be dependent on what your Onco has planned, and where said Onco thinks this might take Mark in the worst times. I am both Port and PEG- carried two pumps hooked-into the Port for 96-hours, twice. That seems to be the reason for the Port- having one, or two, pumps going 24/7 for 96-hours. The only other time my Port was used was when I was hospitalized for 4 days, during which the antibiotic drips, etc., were delivered via IV into the Port.

As for the PEG, or feeding tube- to me, it just makes sense for H&N, where the eating ability is impacted by treatment that puts a hit on the mouth and throat. I've had my PEG since 1/09. Though PEGs are a nuissance, long term, for some of us there is a time in treatment when they can be a critical necessity. And even if such an extreme need doesn't develop, they can be used to make the getting of nutrition so much easier- having a PEG will help a lot with the all-important nutrition.

The best to you and Mark

kcass

Fire34
Posts: 353
Joined: Feb 2010

Sorry about that didn't see the reference to the port. Wish I could have had mine that long
Dave

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kimba,

Sorry you guys ended up hear but now you're here, you will get lots' of support. I had SCC of the left tonsil diagnosed last August 2009 and I finished treatments Oct 7th 2009. I had surgery to remove the tumor only through the mouth as the 2 lymphs did not appear as mets but more as being inflamed. (The reading was 1.8 from the PET /CT and they usually say mets read 2+).

After surgery, I started Erbitux (Target Chemo - 8 rounds 1 x per week) and I had 7 weeks of IMRT (Intensity modulated Radiation Therapy). Using IMRT meant 2 Rad sessions per day as it a different approach and said to be more accurate and reduces collateral damage as opposed to the older machines. Ask about this if not already done.

I had the PEG in 3 weeks into treatment from too much weight loss. Recommend you do it before. I didn't get a port but was given a PICC which went bad and was removed. I had a rough run and was hospitalized and had an IV for fluids to hydrate and to get some of the pain meds in. Needles were a pain but I got through.

Doing well now. Focused a lot on nutrition and supplements. See my 'expressions' if you are interested in what I took/take and for more of the story (click on my name/photo to get there).

Important thing to know is this can be beaten and a good life can return. It can be a bumpy road but worth the effort.

All the best to you and your boyfriend.
Scambuster

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Scambuster,
I welcome your knowledge and your story. The fact that your overall treatment was only 2 months is hopeful, and that your diagnosis is similiar to Mark's. As far at the PET, I do not yet know what the numbers you shared mean. I know in the TNM stages you want your M=0. Do the numbers 1.8 or 2+ mean M=1?
Friday is Mark's PET. It would be very helpful to know whether people on these boards were 0s or 1s. We, of course, and praying for a 0.

I will consult your nutritional information...and Mick gave the address to his Blog where his wife also shared her experience, when I am ready for that I will eagerly seek that informaiton.

Mark cannot understand yet the need to eat more. He asks that I be the information gatherer and share it with him. He has not been here on ACS yet, but General ENT said, EAT. I will start him on nutritional milkshakes tonight with his favorite icecream, Bryer's vanilla.

Thank you for your encouragement and your perspective that there is the other side of this battle. I am very happy to hear you are doing so well.
Kim

Fire34
Posts: 353
Joined: Feb 2010

Kim
Sure wish I had known ealier about eating more. When I started my chemo I was fatigued and never had much of an appetite. Like Scam I was also on Erbitux, but also Taxol & Carboplatin.
Then 5FU & Hydroxyurea during concurrent chem/rad.
I did not have any pre treatment PET scans just numerous CT scans, so I cant be of much help with the numbering system either.
Maybe in his milkshakes add some protein powder or carnation instant breakfast to increase the calories. Again Best Wishes & Prayers
Dave

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

You must impress upon Mark how critical the getting of good nutrition with substantial calories is, Kim. The way he can best deal with the treatment, and recover- NUTRITION. Hondo and Scam are the authorities on good eats, but Joe and others certainly do know more than I- the chef-style salad w/orange French dressing freak. The PEG= excellent having it in place before the treatment starts. Ensure is good stuff, and PEG-friendly.

I got no clue about Pet numbers. I just got my 1-year, which is my 3rd Pet, and nobody ever gave me any numbers. It was either possibly shows, or doesn't- that's the only info given me by my Drs. As for the Pet, there is a thread with that as it's Title. The purpose of the Pet is to see what areas the C possibly are in, possibly find the Primary, and that will help the Drs. formulate his treatment. The fact you are going to a major med center= very good. My team is tied to the U of Iowa, which is supposed to be a top H&N center.

Kim and Mark- a lot will depend on the specifics of the C&R delivery, and the state of the C w/Mark, as far as how rough this gets. I am going to be very interested in those specifics, because of my chemo delivery. If he does get my delivery, there are a couple of critical issues I will advise you about- but you must let me/us know what the C&R delivery schedule will be ASAP. Will be able to help- to avoid what I had to learn the hard way. And please let us know of the Pet results w/specifics ASAP. Know we will all be thinking of you two come Friday, and beyond.

This is an historic time for you two, Kim- not just for Mark. Your role in this will be a major one. Stay positive, girl- Mark will survive, and you two will share many more grand years together.

Believe

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kim,

Sorry for any confusion. Assuming your doctors use the same technique as mine (I had mine done in Hong Kong) the number is a measure of the uptake of the FDG (the radio-active glucose or Fluoro-D-Glucose) which is injected into your body immediately before the scan is done.

Because of the nature of Cancer cells, they suck up the sugar faster than normal cells so any collection of Cancer cells is differentiated from 'normal cells' by the 'uptake' of the FDG. Hence they 'light up' on the PET/CT. From this, they derive the number. From my understanding, if the number is over 2.0 this would indicate the cells/mass is live cancer. Under 2.0 can indicate inflammation as often occurs in the lymph nodes nearest to a cancerous tumor. This is because cancer cells die off (like any cells) and are eliminated by the body via the Lymphatic System.

If the dead cancer cells collect in the lymph node, they can light up to some degree. I am unsure exactly how this works with the dead cells being able to take up the glucose but that is what I recall hearing from my doctors. So, if they're dead, no worries, if they are alive, it can and usually does mean that the live cells have collected in the lymph node. This is not good and that is how cancer can spread through the body, as it can then start to take hold and grow at any lymph node to where it has spread. That process is call Metastasis. Many of the people here have had 'mets' show up in some nodes leading away from the primary tumor, and usually need to get those points irradiated or removed by surgery.

If you can visualize - your Lymphatic System like a long string of loosely strung pearls but the network goes all over your body. The pearls are the lymph nodes.

While this explanation may be slightly flawed, it should give you a bit better idea of the numbers and how the scan works to find the 'C'. I hope you get low scores on this test.

Cheers
SB

PS Definitely get Mark to get some big time protein shakes going and high calories (pref not sugars...) into him to build up some reserves. While not guaranteed, most of us suffered from not being able to eat for a long while or at least had difficulty. You may want to also start some reading on 'Cancer free diet' information as you may wish to make some lifestyle changes now and in the future. Plenty of info online.

bfisher5560's picture
bfisher5560
Posts: 7
Joined: Mar 2010

Hi Kim,
My sister, Sandy is being treated at University of Penn. She was hopeing for the robotic but did not qualify. Please keep us posted on what is happening. The feeding tube has been a good thing for her. She has lost about 35 lbs. since this has all begun. She is in week 2 of chemo/radiation and has gotten to the point she can not take anything by mouth other than pure liquid. This will pass. She is looking forward to milkshakes and applesause as her throat heals a bit more "again".

Let us know how the PET went and whether he is a candidate for the robotic. Sandy's surgeon there is O'Malley, his partner is Weinstein. I hear they are both fantastic. The entire team is fantastic. She really cares for her radio/oncology team, her speech therapist..... Penn seems to have a very caring group of specialists ready to help you all the way through this.
Take care!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I am truely blessed by these boards and all of your experience and advice. I feel like I soak it up like and sponge and use it when meeting with the doctors or talking with Mark. I will follow this treatment team's advice. bfisher, Mark's doctor is Weinstein and I immediately felt very good about him. Mark is not a shoe in for the robotics, we go to plan B with more radiation/chemo and less surgery.

I have posted a new topic, in that we are entering into a new phase: out of diagnostic and into treatment.

All trouble shooting input and greatly welcome, from magic mouthwash to high protien liquids; from ports to PEGs, the more I know the better I help my man.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Kimba,

I didn't have the feeding tube, my doctors felt that I wasn't so thin as to lose that much weight. I am 6' and weight was 275#, so I was generously nourished going in, LOL.

I lost around 35# total during my treatment. Seven weeks of the treatment (last few of radiation weeks, then a few post radiation weeks) were mainly survived on Ensure Plus, water and a few sliced peaches (DelMonte Jarred) with pain meds before drinking.

My doctors were fairly aggressive as I didn't have any other health issues. I had SCC STG III tonsils with one lymphnode involved as a secondary.

Nine weeks of Chemo in three week cycles (Cisplaten, Taxotere and 5FU), then seven weeks concurrent (Carboplaten every Monday and radiation 35 days (M-F)) with Amifostine before each radiation dose.

I was more frightened of my second PET scan more so than the first. I felt at least I'll know where everything is and they can figure out how to fight it. It only lit up at the tonsil site and the lymphnode.

My next PET was a few months post treatment, nothing lit up (great relief). The tumor (lymphnode) actually dissolved and was gone. That was a huge releif as well since that saved me having a neck dissection.

Next PET is in August, if all is well, the port will come out February 2011.

There is a huge information base here for you, glad that we can offer each of our experiences for you and yours to draw upon.

Fire34,

No worries....my port is actually called a power port I think. Anyways it works both ways and for everything. They administered the Chemo and everything else through it. They can also draw blood samples from it if needed. I usually just have blood drawn through the vein though as it only takes a second and my veins are good.

John

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Yes- mine is called a Power Port. Best not to look at the needle used w/flushing, though the pain of it all is no big deal. Got because of the Chemo pumps, and was used during all of my hospital stay w/antibiotic drips, etc. Was told, initially, that the standard for a Port is to be kept for 3-years, which leaves mine in until early-Feb/2012. Last Oto visit, he said it might be good just to keep it very long-term. It isn't a hassle, physically, other than the monthly trips to the hospital for a $135 flushing, which I mentioned to my Oto. But, you know, I'm thinking about it, now, and being of 55 1/2-years, and a C survivor, as long as it's in there and functional: could be that down the road the danged thing might come-in handy as having in case of even a surgery, or other med problem, non-C related. Just might not be a bad thing to keep for as long as I can.

Thus, a question: anybody have a Port for at least 5-years? Or longer?

My next PET is in October, John. Will be my 4th. My experience that each PET gets tougher to emotionally deal with, as the farther away from treatment it seems the greater likelihood of another fight. Still, my last PET, a full year after the last rad, was cleaner than the second PET, only 3-months after that last rad, so I reckon it just is as it is. As always, John

Believe

kcass

Flakey_Flake's picture
Flakey_Flake
Posts: 130
Joined: Jan 2010

I have a friend who is a 3X breast cancer survivor. She has a permanent port on the side of her arm, near the torso. I totally agree - it took me a while to get used to my port, put in on the right side of my collar bone, but now think it is the greatest thing ever. The nurses at my clinic also prefer a port over a PICC line. I never looked at the needle that goes into the port, but my boyfriend got one and I watched his being accessed. The needle looked something like a finishing nail. It is also interesting how you get de-ported after treatment. They just kind of snap off. Amazing what they can do now days!
Sharon

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hi Sharon,

Not sure of the specifics on the port you speak of, but mine is surgically implanted under the skin. I'd presume they'd need to perform a similar operation to remove it. It has a tube on the back of it that runs directly into an artery I believe.

Unless you are speaking of removing the pin that the use for injecting meds/etcs into you via the port.

JG

j3rey
Posts: 56
Joined: Apr 2010

Hi Sportsman,
THis post caught my eye. We are new this. Hubby just had neck dissection and Radiation yet to come. Our doc did mention that Radiation can kill your thyroid gland. He will have to have thyroid checks every three months after radiation. Have you had your thyroid levels checked? (I have thyroid issues, and cold and tired are very familiar to me! :)
With the right thyroid supplement, I feel fine.
Jen

davidowe53
Posts: 4
Joined: Feb 2010

Hello, My name is David and am almost 6 months post treatment please be patient and follow all your doctors advise. 23 rad and 23 chemo and they litterally burnt my tonsils out and all i do is worry not a good thing as i was told to give it aat least a year for some things to heal not all. Please listen tp ypur body and not your head as it is truly a whole new way of life.. good luck and god bless you both and e-mail me any time at davidowe53@yahoo.com

kkw62
Posts: 12
Joined: Jan 2010

My husband will soon be celebrating his 2 yr mark with SCC in the left tonsil. Just a few things I found very helpful as many days will be a blur with treatments/appts/labs etc. I got a daily planner that I kept with me at all times. All apts,treatment times were kept there. I also made sure to keep several business cards from each health professional we dealt with - it was nice to just be able to hand the next dr the previous drs card and not try to remember phone numbers etc. I also used my planner to record his lab results and his weight and also our mileage for tax purposes. I would also suggest you make note of each dr's nurse as they will be your initial contact if you have any questions or problems arise. We did get a port which he used for his chemo treatments and for labs-it made it much easier on his veins. We also had a feeding tube which I would highly recommend - it was used for nutrition as well as for meds; my husband lost nearly 50 pounds which he really didn't have to lose to begin with. Make sure you also have a strong relationship with your pharmacist - often meds were changed every few days due to increased pain - near the end of his treatments all of his meds had to be in liquid form as he could not swallow pills.

I can not agree more with others here who have told you this website will be one of great information! I did not discover this site until after treatments were finished. It is reassuring to know that some of the things you will experience as a caregiver and the patient are normal. I check this site regularly and still find information that is very helpful.It helps to hear from others who have walked this same path. This is a nasty disease but with the strength of family/friends and those you meet here you BOTH will be stronger!

Best of luck!

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Sharon: "Finishing nail," is a good description.

kkw62- 2-years! Yes!!! And, yes to the tube and Port, which I also got/still have. Everything in your post is right-on, and a real experience many of us have shared. Thank you. Would like to hear of any lasting side-effects your husband is still dealing with. Like John, my Port, which has been called a Power Port, is under the skin and spliced to a vein or artery in my upper-left chest in the heart area. As for removal- got no intentions on getting it out any time soon, but do know a surgery will be required for removal. Do not think Sharon's friend has a Power Port- a little too bulky for the arm to handle.

kcass

kkw62
Posts: 12
Joined: Jan 2010

You asked about continued side effects - there are several but considering what the other option could easily be, we'll take these. Continued salvia trouble - he does take an RX and that has helped but not where it was before the salvia glands were destroyed. Still has weight issues although he eats very well considering his throat doesn't always work the best. Swallowing certain things continues to be an issue - such as beef. We eat a lot of chicken and fish now - those items he can easily swallow. He uses gravy or baked beans with the sauce when he wants to try beef or pork. He has some vision issues but nothing that a set of prescription reading glasses at this time won't fix - he's never needed glasses before - but then it may be nothing more than age and not treatments. He has had some dental issues and recently completed 20 hyperbaric treatments, had 4 teeth removed followed by 10 addtional hyperbaric treatments. Recent checkup with dental surgeon felt healing was improved in the jawbone area and the mouth floor. The hardest issue for him and others around him is the hearing. He has had significant hearing loss due to cisplatin used for his chemo treatments. It is very difficult for him to hear in a crowded room or resturant, very hard for him to hear a conversation on the telephone or his cell, very hard for him to hear the tv or even to just carry on a conversation with him. It is easier if you face him when trying to talk to him but that is not always remembered. He did have a hearing test with his ENT but will not agree to get hearing aids - we have had two different apts scheduled and he will back out at the last minute.

We wish everyone dealing with this disease courage, faith and strength - always remember God never gives us more than we can handle although there may be days when you wonder what you did to piss the man upstairs off.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Reckon I've been lucky with the hearing-loss, as I have had none. The saliva and teeth thing seem to be typical with NPC, tonsil, and tongue, and I can include myself in that club. But TWO-YEARS= I do plan on getting there, but got a ways to go. As for the hearing aids- if one can afford it, and it does improve the quality of life at minimal discomfort, it does seem a logical path to take. Hope you can talk him into it.

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

you have gotten lots of great advice so far. I wish I found this site before I went thru treatment.

I am a stage 4 SCC with unknown primary survivor. I have a rare genetic blood disorder, Fanconis Anemia. Apparently those of us that live long enough and escape dying early can end up with HNC.

I wish your partner only the very best, and he is very lucky to have your support.

~~~~sweet

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