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My brother Paul has cancer

Paulssister
Posts: 30
Joined: Jun 2010

Yesterday, my brother Paul told me he has been diagnosed with tongue and neck cancer. The cancer is on the back of his tongue and he has one large lump plus 3 smaller lumps on his neck which is also malignant. He has, over the past 3 months, lost 30 pounds so when he told me that, I knew that the possibilities of it being cancer was real but still to receive the information is quite upsetting. Last night, I cried myself to sleep and today, I want that behind me so I can be strong and supportive for him.

I live in Florida and he in Missouri. I will be leaving Sunday to stay with him as long as it takes for him to beat this horrible disease. I must say this network has already helped me to understand more of what he will be going through. Actually, this web site is like a wealth of knowledge and a gift to those who face this tough road. However, I do still have some questions and would appreciate it if someone would share their information.

The doctor stated he must see a dentist prior to having any radiation treatment as the radiation will kill any teeth that are not perfect. I have read else where that the treatments really kill the jawbone and that is the real reason most or all the teeth must be extracted. Perhaps I have not read the right discussions but is this the first step? Also he is just having radiation not chemo. I would think he would need both. He was informed that the radiation will anger the cancer...what does that mean? The doctor also told him before treatments to try and gain back as much weight as possible. I certainly understand that but the doctor urged him to eat lots of beef and fish. Is there anything else he should be eating which will help his weight gain? He will be having a feeding tube and after reading the discussions, he should be doing this before his treatments begin. Will the doctor advise what nutrition he should have on a daily basis? If not, where should I go to find out? Paul said, he could lose part of his tongue. Are the operations performed before, during or after the radiation? And, last but I am sure I will think of more later, he was told he has a 50/50 chance. Please tell me that is good enough to beat this.

Thanks so much for your help.

Susan

MarineE5
Posts: 755
Joined: Dec 2005

Paulssister,

First, let me say that I am sorry to hear that your brother has to travel this road, but as you can see, there are allot of us that have gone down the path before him and we are doing pretty good. As you mentioned, there is a wealth of information here, so do as you have already started, ask questions to find answers. I will attempt to answer some of them now.

I too am a Base of Tongue Cancer patient/ survivor. I had part of my tongue removed and then it was reattached. I had 30 Radiation treatments without any Chemo as your brother will receive.

I had a operation to have the Peg Tube installed at the same time as my radical neck disection and removal of the tumor on my tongue. It would be better to have the Peg tube inserted prior to radiation treatments. Paul has lumps on his neck, they are lymphnodes filtering the cancer cells. They may be removed by a neck disection as mine were. After the operation(s), there will be a 6-7 week healing period for the tissue to heal before the radiation treatments start.

After the radiation starts, the first few weeks are not too bad, but the radiation is accumlative and the effects increase. The road gets bumpy here and after the treatments are done, it might be another 4-5 weeks before he slowly, and I mean slowly starts to recover. Each person reacts differently, I am giving you the worse case input. He might actually handle everything very well compared to some of the other patients he will see at the treatments.

The nutrition that he will put in his Peg Tube will be as the Doctor instructs or what his insurance will pay for. The Peg is a back-up for him when his mouth gets to sore to eat orally. He will need to swallow water daily no matter what so he doesn't loose the swallow motion, this is very important, to continue to swallow daily. He needs to take in 12 times his body weight with calories. If he weighs 200 pounds, he needs 2400 calories each day to maintain his weight. The Doctors advise to gain weight before treatment, because nearly everyone loses weight during the treatments.

50/50 chance. Don't read allot into numbers, many numbers are outdated, you can worry yourself sick looking at the odds of survival. I know, I did it at first also. Most of the numbers are based on a 5 year survival rate. I can tell you I have passed that mark. Am I able to do the same things before cancer, no, but I am able to do allot of things, we find a " New Normal ". He will get through this. I know people that were told they had 2 years to live, that was 8 years ago and they are here and going strong, so the Doctors don't know everything. They are good, but they are looking at numbers.

Remember this, it isn't the size of the dog in the fight, it is the size of the Fight in the dog that matters.

My Best to Both of You and Everyone Here

Paulssister
Posts: 30
Joined: Jun 2010

From the bottom of my heart, I thank you. At this point I am so stressed and your response has given me hope. When you first hear about the disease, the first thing that comes to mind is the worst. We just lost our mother to lung cancer two years ago so it feels like that we have just re-entered the "twilight zone." I know it is most important for me to stand strong and help Paul get through this and I will keep your email with me and read it every time I need more strength.

God bless you.

Kind regards,

Susan

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

You came to the right place, you'll get alot of info from people who are going threw the same thing or close to it, it is not walk in the park, stick with your brother, do what you can to get him threw this, it is a rough road, Dennis

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Hi Susan

Your brother has an excellent chance of beating this cancer. I'll answer the questions I know. Removing all the teeth is not normally done nowadays. That is an antiquated approach to treatment which concerns me. Thats not just me talking but a direct quote from one of the countries leading experts and oncologist who addressed my cancer group last month. It is possible your brother has very bad teeth to begin with and the doctor is right????Radiation weakens the jaw bone and really limits blood flow to the jaw bone. Extractions become very difficult when the jaw bone is brittle and cannot heal because of limited blood flow. For the record he should see a dentist experienced with head and neck cancer patients and have a full evaluation of his teeth conducted. Any questionable teeth should be extracted. Healthy teeth can remain. I had zero teeth extracted.

He should really be eating anything he likes to put on weight. Now is the time to eat with reckless abandon and eat anything he likes, especially his favorites as taste buds may never be the same.

Since he is starting out 30lbs already gone, a feeding tube is a great idea and it almost always makes sense. Yes it's normally done prior to treatment. The doctor is doing the preliminary steps now. Other preliminary steps include baseline swallowing tests and hearing tests for later comparison as both of these functions can be impaired.

Yes he could lose part of his tongue. Hard to tell without more information, does he have base of the tongue cancer or is it literally on the back of his tongue? Surgery can be performed before or after radiation. Surgeons prefer before because the tissue has not yet been damaged by radiation but it is done both ways. This is common with neck disections. Tongue surgery is more common prior to radiation.

It is unusual that chemo is not being recommended and I certainly would question that? 50/50 is the old standard that you find all over the internet based on 20 year old information. I would guess his odds are much better. Please don't be afraid to seek a second opinin at a hospital that specializes in head and neck cancer. Go to a comprehensive treatment facility utilizing a team and tumor board concept accredited by ACS. All that information is available right on this sight.

Find out what your brother's cancer is staged at and post it here and we can help you further. There is an international staging coding system that uses numbers and letters.

I'm sorry you have to undertake this journey but what a great caregiver you will be and what an asset to your brother. All my best to both of you.

Paulssister
Posts: 30
Joined: Jun 2010

I cannot tell you how much your response helps me. I have also sent it to my brother, Paul as I am sure it will help him as well.

The doctor is sending him to a dentist to have his teeth checked for any problems and if there are none, then yes, he will be able to keep them...I think I became overwhelmed after reading a segment from a lady whose husband had to have all his teeth removed and I just figured this is what Paul would have to do.

When I go to the doctor with him, I will ask about the chemo and see what his response is.

According to what I can understand, the cancer is at the back of the tongue but I will find out more from Paul and the doctor and also what stage.

Thank you so much for taking the time to write. I truly, truly appreciate it.

Kind regards,

Susan

Paulssister
Posts: 30
Joined: Jun 2010

Paul's cancer is at stage 3. He told me he will have, during his radiation treatments, 3 chemo treatments. He is going to the dentist next week. He will also, next week, have a biopsy of his tongue done and the feeding tube inserted. He will spend the night at the hospital. After that his radiation treatments will begin and will last approximately 6-8 weeks.

Thanks for any information you can provide regarding the staging coding system.

Susan

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

You have the two champions Marine & Rat helping when it comes to tongue cancer, so I will only say Hi and welcome you to our family.

Take care and keep posting on how Paul is doing

Paulssister
Posts: 30
Joined: Jun 2010

Hondo...

Thank you for the warm welcome. I will definitely keep in touch. This web site and all of you have given me the strength I need to go forward and help my brother win this battle!

Kind regards,

Susan

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Susan,

My husband was also diagnosed with Stage 3 base of tongue cancer which was confirmed to be HPV+ after a tongue biopsy. He is at the end of his 7 weeks of chemo and rads this week. He had a feeding tube put in 2 weeks prior to treatment which has truly been a lifesaver. We were told the success rate was 90/95% so we are very hopeful. It is so hard to wrap your head around everything in the beginning. My heart goes out to you and your brother.

Paulssister
Posts: 30
Joined: Jun 2010

Lena Rose...

Thank you for your kind words and telling me about your husband's road to recovery. All of you folks on this web site are truly an inspiration to me and, although just a few short hours from learning about Paul's condition, I truly feel hope today where yesterday I felt none.

Please give your husband a hug for me...and you another.

Kind regards,

Susan

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I agree with Hondo, very knowledgeable advice and experience from the members above.

I agree with Ratface as for the thinking on dental and teeth removal. I had tonsil cancer with a lymphnode involved as well, making mine Tonsil Cancer SCC - STG III HPV+. I also had my dental work checked out before radiation started, and also had no teethe extracted. I am one year out from all of my treatment (nine weeks of heavy chemo, then seven weeks of weekly chemo with daily radiation). The latter being similar to your brothers treatment plan. The only surgery I had was for the tonsils being removed.

I started out with plenty of weight and didn't need a PEG inserted.

Also, to get back to dental, I just went this last week and had a few fillings and a crown. These were from older fillings that have wear and damage. I don't really think it's been accelerated by the radiation as this isn't uncommon from my history.

Also, like Ratface says, don't pay attention to statistics, most are old, and everyone is different. Recent history suggests that HPV related H&N cancer tends to respond well to chemo and chemo/radiation. Not sure if they checked the biopsy for HPV or not...

Good Luck and God Bless,
John

PS where in Florida, I'm in Lakeland between Orlando and Tampa....

Paulssister
Posts: 30
Joined: Jun 2010

John..

Paul was a little confused when I told him I had joined this web site. He couldn't understand why I would need "help." However, after forwarding him the responses I have received and explaining to him that I want to know as much as possible about this disease so we can beat this beast together, he too is now appreciative of all the support we have received.

I did read a little about HPV on the National Cancer Institute web site. It stated it was better to have it than no to have it. I will make sure when we find out the results of the biopsy whether or not he has it.

We live in Jacksonville. Moved here from Virginia about 5 years ago. My husband has become a huge Jaguar fan but I am not so taken with them. However, it is fun to go to the games.

Paul is telling our father about his condition as I write. I am concerned about my father as he cared for our mother for a couple of years while she battled (and lost) to lung cancer two years ago. He is old and frail and I am sure he is not going to look forward to jumping in with both feet...but whatever it takes, I am sure he will do it.

John again, thank you. This web site and the folks who are here for others are certainly an inspiration.

Kind regards,

Susan

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

My dad was told in March that he had base of the tongue cancer, stage 3 also. He is getting close to the end of his treatment. I had 35 weeks of rad and weekly chemo. He has been one of the lucky ones and has done great so far. Like you brother he also lost a lot of weight before diagnosis from not being able to eat. So far suring treatment he has only lost about 8-10 pounds. He did not have a feeding tube put in. He is a large guy with plenty of extra weight. I was very nervous and confused but have found out so much from this board that has helped us through this process. My dad went through a really rough period at the beinging but found out that is blood pressure meds were the problem, since then he has been getting better.

He has alot of problems with mucus, normally more so on the days after chemo. His throat is very sore but not horrible.

I know that your brother will beat this and you will be there to help him. At times it has been really hard on my mom and I when we had to fuss at him to drink and move around more but, when they told us how well he is doing and makes everything.

Best of luck and please keep in touch.

Paulssister
Posts: 30
Joined: Jun 2010

Pumakitty...

Om my, what a road you, your mother and father have had to travel. I appreciate your kind words and admire your strengh through this trying time. I will keep you posted about Paul and also keep you, your family and everyone on this web site in my prayers.

Kind regards,

Susan

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Susan,

I am sorry to hear about your brother, but he can beat this. I was stage 4 scc Right tonsil. I am 2 months past treatment and doing good. Yes there are some rough times ahead, but he can do this. My prayers are with you both as you go into battle this monster.

Remember to keep posting here and people will help you. They are all great.

Best,
Steve

Paulssister
Posts: 30
Joined: Jun 2010

Thank you Steve! I am thrilled to hear you are doing well. I know this will be an uphill battle but with all of you behind Paul and me, I am confident we will beat this wretched disease!

Kind regards,

Susan

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

Susan........on down the road, Paul is gonna need a few months of excercise physiology to get his stamina and balance back in shape. My only daughter and her husband are both Doctors of Physical Therapy at Brook's Rehabilitation there in Jacksonville, so I'm sure they could get him into the best of schedules to get back on track. It could be 5 to 6 months from now, but post up when he's ready. I'm one year finished from treatment for stage 4 left tonsular cancer, and am doing quite well with the best physical shape I've been in since my early 30's. Like John, my tumor has been gone since the mid-point of my treatment, and my physicians can't believe how well I've recovered. They evidently laid the chemo (6 sessions) and rads (36 straight days) on me. My beautiful ENT gave me a stick this past Monday. She said to use it to fight off the women...LOL !

Larry

Paulssister
Posts: 30
Joined: Jun 2010

Well, Larry...you handsome devil :) I am also totally impressed with your recovery. Life certainly threw you a curve but it sounds as if the old saying, "You can't keep a good man down" applys here.

Actually, Paul live in Missouri but now that I know he should have a therapy program ready when he is, I will look for one in that State.

Thank you...I really appreciate all the help and support I have received from folks like you...this web site has been a God send!

God bless.

Susan

rozaroo
Posts: 667
Joined: Apr 2010

I am sorry that your brother has to go through this. However, he is very lucky to have you by his side. I just wanted to let you know that I had stage 4 b cancer of the left toncil & am three month's post treatment. Thing's are much better for me & I just had my checkup last week & my Oncologist could not see anything left of the tumor. I have a CT scan scheduled for
mid July. I am concentrating on living my life to the fullest. That is the best I can do. Cannot change what is in the card's for me but for now I don't think about what I can do nohing about. I am fairly new to this forum also, but I have gained so much from all of the
the wonderfull people sharing their experience's & it has been most helpfull to me. I wish both you & your brother the best & will keep you both in my prayer's!
Roz

Paulssister
Posts: 30
Joined: Jun 2010

Roz...

Thank you for your kind words and prayers. Both are appreciated. I am so humbled by what you and others on this web site have been through and have survived. It proves to me that man is not only a fighter who can beat this ugly beast but also a kind person with a heart of gold.

I wish you the best and also hope you keep in touch.

God bless you.

Kind regards,

Susan

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

Susan, Some of the hardest words I have ever heard were "it's cancer". The blood ran out of my head, I was as white as a sheet, and had to put my head down for 10 minutes so I would not have to be picked up off the floor when the pathologist shared with me and my partner that he had cancer. Hearing the news of your brothers cancer I am sure is frightening. We all have our preconcieved ideas of what cancer is. You have just tapped into the most valuable resource there is for surviving the psychological effects of cancer. As you have read from all who have responded so far, there are people here who have had what your brother has. They know every detail of the fight to survive this cancer. What you will also learn is it is survivable. My partner was diagnosed in April and the first ENT threw out all of these bleak statistics about survival that were very general in nature and not specific to Mark, or the nuances of his cancer. We were alarmed until we met with a doctor who treats Head and Neck cancer ALL the time. Those percentages shot up to the 85-90% range.
Mark just started the chemo/radiation part of treatment after super surgery phase and his started in his tonsil. We all travel this road and learn a lot; as a result we can offer information and support. Those here who have had base of the tongue primary and/or have gone from A to T (I don't say Z because you will learn this is something that is always a part of life and there is no Z) with treatment will give you the most information relevent to your brother's journey. Stay with us, regardless which state you are in (geographically or menatlly). There is always someone here.
I am impressed with the relationship that exists between you and your brother that you would pick up your life in Florida and go to him as he faces this phase of his life. To not be alone is HUGE, for all of us.
My best to both you and Paul,
Kim

Paulssister
Posts: 30
Joined: Jun 2010

Kim...

You read my mind. I most definately had visions in my head...and they were not sugar plums. The first night, I cried my heart out because, like you said, I could only imagine the worst. However, after joining this web site, I have actually gained the knowledge that this thing can be conquered. All of you with your kind words and support have made me relax and focus on what needs to be done rather than bemoaning what could happen.

My brother and I have always been close but the person I am most impressed with is my husband who said, go...take care of your brother. There are so many things he will have to take care of here. Luckily, nothing as urgent as Paul. I am truly blessed to have both in my life and now a wonderful support group, who feels very much like family.

I know Mark is starting his treatments today. My thoughts and prayers are with him and you today...and everyday.

Please keep us all posted.

Kind regards,

Susan

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

Hi Susan,

Plenty of good advice here from your new friends. Your brother may not feel the need for these friends yet but when the going gets rough, he may change. It would be good for him to join too as passing 2nd hand information can be difficult sometimes. You will find many answers here your doctors don't have, post away as you are going through.

On the weight gain and more importantly diet, there are several trains of thought. Most Doctors don't believe diet has much to do with our disease nor our recovery. Nearly 'all' alternative therapists do. Doctors don't study nutrition apart from 1 day in their entire training.

In brief, i have taken to the diet and nutrition bandwagon. The basic and total thought is that we should only be eating a plant based diet and preferably raw foods. This means fruits, vegetables, salads, nuts etc. No Animal proteins at all - including dairy. It also means eliminating all junk foods, fried foods and processed foods. You will need to do your own research on this (or your brother will) as it is a big shift in behavior. I figure we were doing something wrong to have got this disease, so by eliminating all the things that may have caused or contributed is a good idea: junk food, animal proteins, sweets and pastries, alcohol, smoking etc. It is also thought an acidic body promotes cancer while keeping your body alkaline, help prevent it. The above diet will do this by itself. You get the small litmus strips fm your drugstore and test his pee for the pH.

I also believe that using supplements and vitamins to help us recover and rebuild our immune systems is critical. If the immune system is working properly, it should kill off all cancer cells before they can form 'foci' and get a hold. You can go to my 'Expressions' page for more information and couple of very god book references.

We understand you must be processing a lot right now, but you will soon get a good grip on what is going on. Carry a notepad and write down questions and other bits of information and that will make the data collection and general management of this a little easier for you. I was knocked down for about 6 months total. I, like Steve, has it in the tonsil, so not as involved as your brother. As the guys above said, the last 3-4 weeks of treatment can get rough and also post treatment is very hard going and it may take a few months for him to get back into the game. Depression can be a devil at any time during treatment but most common as soon as treatment is over so just note that.

Keep in touch and the gang will be here. Don't get yourself too stressed, just take each moment as it comes and deal with things as they crop up.

Regds to you and your Bro.
Scambuster

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hi Susan,

Where is your brother at in Missouri? I'm in St. Louis. If he's in this area and needs any assistance, he can email me directly or on here.

I've read numerous books now and I'm in total agreement with Scam on the nutrition thing. Overall there are tons of great people on this site with lots of good info. I would suggest your brother sign up; it's well worth the time. I wish I had joined earlier.

The only things I'd like to add is not to be afraid to get a second opinion. There are lots of qualified teams of physicians around. Also you can learn a lot here. Ask the doctors lots of questions and be well informed. Last, one of the biggest common denominators we all face after radiation is issues related to the destruction of salivary glands. There is a drug that has been discussed here (Amifostine??) that some have use that may limit the damage. I would ask about that? I did not know about it til too late.

Good luck!
Greg

Paulssister
Posts: 30
Joined: Jun 2010

Greg...

Paul lives in Independence, Missouri. I appreciate your kind offer and although not in visiting distance, you are very close because of this web site and for that I am grateful.

I also appreciate the suggestion for a second opinion and the information about the drug. I will ask the doctor about it when I see him.

Although he has not joined this web site yet, it is a goal of mine to have him do so. He needs to be here and see and get this information first-hand.

Again, many thanks Greg.

Kind regards,

Susan

Paulssister
Posts: 30
Joined: Jun 2010

Greg...

Paul lives in Independence, Missouri. I appreciate your kind offer and although not in visiting distance, you are very close because of this web site and for that I am grateful.

I also appreciate the suggestion for a second opinion and the information about the drug. I will ask the doctor about it when I see him.

Although he has not joined this web site yet, it is a goal of mine to have him do so. He needs to be here and see and get this information first-hand.

Again, many thanks Greg.

Kind regards,

Susan

Paulssister
Posts: 30
Joined: Jun 2010

Greg...

I have tried to post this reply two or three times so if you happen to received several copies, you will know why...please forgive if this does happen but for me it doesn't indicate it was posted.

Paul lives in Independence, Missouri. I appreciate your kind offer and although not in visiting distance, you are very close because of this web site and for that I am grateful.

I also appreciate the suggestion for a second opinion and the information about the drug. I will ask the doctor about it when I see him.

Although he has not joined this web site yet, it is a goal of mine to have him do so. He needs to be here and see and get this information first-hand.

Again, many thanks Greg.

Kind regards,

Susan

Paulssister
Posts: 30
Joined: Jun 2010

Scambuster...

Well, we have all have heard it a million times, "You are what you eat" and most of America is proving we are not eating healthy. I would think the hardest thing to eliminate from the diet would be the dairy...and, then of course, the sweets. I have pretty much eliminately meat and fish from my diet not because of health reasons but because of the treatment to animals...however, I don't think I could ever go the Vegan route but perhaps someday. I went to your "Expressions" page and copied down the books. I would like to read up on this interesting subject.

It's also interesting about the tonsils, when I was little, everyone had their tonsils out and then there was a shift not to do so. It seems that they have caused problems for some of the folks on this site. I wonder how many with tongue cancer still have their tonsils?

Thank you for the tip about carrying a notebook...I will get one.

Yes, I can imagine depression is a evil twin to this disease. I will do everything in my power to help Paul "keep his chin up" and concentrate on being cancer free.

I have said it before and will say it again, this web site and those on it have been a God send for me. I can't even imagine how hard this would have been without all of you here to support Paul and myself. I am truly grateful.

Again, Scambuster, thank you.

Kind regards,

Susan

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Sorry your family's going through this. Glad you found this site. I can't tell you what a blessing the folks here have been to me (and many others). I was diagnosed with Stage 4 Base of Tongue cancer with lymph nodes involved in October. I finished my treatment in March. I did chemo and radiation - no surgery. My 6 week CAT scan showed no tumors remaining (I started with three). I'll have more detailed tests at the end of the month.

The lack of or reduction of saliva most all of us experience is why there's concern for the teeth. Saliva helps remove the organisms from our teeth that promote decay. Since we have decreased protection, we're given other tools to help protect our teeth (special toothpastes, rinses, flouride treatments, etc.). I was also told to have my teeth cleaned every 4 months instead of 6. Most people do not go through loss of jaw bone, luckily.

It is wonderful that you're able and willing to go to Paul to help him through this ordeal. I'm sure that will really make a difference in his treatment journey. Bless you both.

- Pam

Paulssister
Posts: 30
Joined: Jun 2010

Pam...

Thank you so much for the information. It is far better to know what may happened during the treatments than to go through it learning along the way. As you know, it is pretty scary and like you said, the folks on this web site are a blessing and that includes you.

Please keep me posted on your test results. Your CAT scan is certainly exciting news!

Kind regards,

Susan

Jan Trinks's picture
Jan Trinks
Posts: 467
Joined: Apr 2009

Hi Susan:

Welcome aboard. I'm so sorry to hear about your brother. But stay positive. My husband was diagnosed with h/n cancer in Nov. 2008. Probably was Stage 4 as one lymph node was involved; but it was just located on inside below his left ear. I too was devastated. We were truly blessed to be in the area where the best of the best are. He had 3 inductive chemo treatment and 35 radiation treatments. He finished treatments April of 2009. Has been back to work a year now. It wasn't easy, but through faith, prayer and the great medical team he has and all the people here we made it through. You and your brother are in our prayers and best of luck to you both.

Jan and Charlie Trinks

Paulssister
Posts: 30
Joined: Jun 2010

Jan...

Thank you for your welcome, prayers and kind words of encouragement. I do so appreciate all.

It is certainly good news for you and your husband and I am sure he is glad to be back at work with more to concentrate on than his past two years. It is folks like you, who have taken the time to write and let me know about your experience that has given me the courage to fight this disease head-on. I look forward to looking at it in the rear view mirror.

Again, thank you.

God bless both.

Kind regards,

Susan

Jan Trinks's picture
Jan Trinks
Posts: 467
Joined: Apr 2009

Hi Susan:

Welcome aboard. I'm so sorry to hear about your brother. But stay positive. My husband was diagnosed with h/n cancer in Nov. 2008. Probably was Stage 4 as one lymph node was involved; but it was just located on inside below his left ear. I too was devastated. We were truly blessed to be in the area where the best of the best are. He had 3 inductive chemo treatment and 35 radiation treatments. He finished treatments April of 2009. Has been back to work a year now. It wasn't easy, but through faith, prayer and the great medical team he has and all the people here we made it through. You and your brother are in our prayers and best of luck to you both.

Jan and Charlie Trinks

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

Susan, I'm very sorry to hear of your brother's diagnosis. I had cancer of the voicebox. I am now 8 months post trmnts. I just want to welcome you and Paul to the CSN and tell you that Paul, you and your dad will be in my prayers. Paul can and WILL beat this. There are a lot of us here who have faught the battle and won, just as Paul will do. I'm also very sorry to hear about your mom, I also lost my mom to cancer (breast) and so I know what a large pill to swallow that is as well. Now, you must concentrate on Paul and help him fight this battle. It will be hard and tiring but doable. Come here often for whatever reason you need to, info, questions, to vent, encouragement, support, we are all here for you. You are now a member of our family and we will be here for you. Please keep us posted on Paul as we will be thinking of him and his family. Let him know that we are here for him.
Good luck and hang in there Susan.
God Bless you friend,
debbie

Paulssister
Posts: 30
Joined: Jun 2010

Debbie...

Thank you for your kind words and words of encouragement and support. I am currently in Independence with my brother, Paul. To date, he has been told he will have to have 6 molars removed. I think this will happen next Friday but he is checking with his doctor on Monday to make sure. Also, on Friday (if this is the day), he will have a biopsy of his tongue and have his feeding tube inserted. Fourteen days after he should begin radiation with 3 chemo treatments interspearched.

I think it is interesting that Paul does not want to join or know what is going to happen as he feels everyone is different...which I agree however, I want to know what can happen so I will be able to face it and deal with it immediately rather than getting over the "shock" which I did have with the announcement from him that he has cancer.

Again, Debbie, thank you. God bless you and please keep in touch.

Kind regards,

Susan

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Susan,

I can understand Paul's reluctance to come here. I've been a big fan of the site ever since I stumbled upon it. My family members, and at least one of my docs are another story. A few expressed concern about me "chatting with people who might be just whiners and drama queens", and the notion that "a larger percentage of posters are people who've experienced the most difficulties with treatment". Some folks may think that reading about others' experiences may make them worry about things that might not even come to pass during their own treatment journal, so why fuel your imagination with horror stories? I read about (and worried about) some bad effects of treatment that others experienced and I (luckily) never had to go through. I am still very glad I found this site, and learned all I could from the helpful members here.

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

That may change as he gets farther along with his trmnts but if it doesn', that's ok. Like you said, you will know what's going on should something come up. I wish you the best and don't be discouraged b/c he doesn't want to come here.
God Bless you friend,
debbie

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