Newly diagnosed...need advice.

Kimba1505

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

Hello and Welcome!Your
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

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

naturenaw said:

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!

Awesome post
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.

soccerfreaks

questions
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

questions
double posted

train-nut

Kimba1505 said:

Awesome post
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.

Two Cents Worth
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

Kimba1505

soccerfreaks said:

questions
double posted

Thank you Thank you Thank you!
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!

sportsman

Newly Diagnosed
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

delnative

Kimba1505 said:

Thank you Thank you Thank you!
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!

Hey, Kimba
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

CajunEagle

sportsman said:

Newly Diagnosed
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

Kimba
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

CajunEagle said:

Kimba
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

Welcome
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

Tanager75 said:

Welcome
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

Strengthened already
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

Kimba1505 said:

Strengthened already
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.

Stay Strong
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

Skiffin16 said:

Stay Strong
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

Best Wishes
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

Fire34 said:

Best Wishes
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

Good advice
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

Kimba1505 said:

Good advice
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??

Hi
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

Fire34 said:

Best Wishes
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

Port
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

Skiffin16 said:

Port
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

Port
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

Kimba1505 said:

Port
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.

Kimba
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

micktissue said:

Kimba
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

Kimba
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