falling apart, stage 4/ aggressive treatment radiation and chemo for 6 weeks
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Hi Betty
OK it’s bad but most of us here are use to getting bad news, I had NPC and my C came back 3 times and I gave it a fight all three time. I have been in remission on and off for the last 7 years so the good news is you can get through it. You as his caregiver will need to be right there for him giving him hope and courage to keep focus on getting through this. Get as many people to keep him in prayer as possible, you might not believe this but there is power in pray. For now I too will also pray for the both of you.
God Bless
Hondo
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Welcome Betty...
I had similar....
Dx in January 2009 as STGIII SCC Right Tonsil and a lymphnode (same side)...
This was after about 2-3 months of going through my GP and several rounds of antibiotics, which of course did nothing as for the cancer.
Once (actually the first visit) I saw my ENT, he scoped me, sent me for a CT, had me come back that same day, then told me that he was 90% sure that I had SCC Throat Cancer. And more than likely as I wasn't a snoker/tobacco user, it was HPV derived...
He set me up to have the tonsils out the following Monday, initial visit was Friday.
He took the tonsils out, confirmed it was SCC, and sent the tissue out to confirm HPV. The results came back in a few weeks poisitve for HPV.
He left the tumor as it was close to the caratoid to see first the effect of Tx, a possible dissection might be needed.
I then had the power port installed, no PEG though... (I'm generously nourished, LOL)...
The regime for me was similar to P51 and several others that came after me, or around the same time.
Nine weeks starting Monday, (three week cycles)... Cisplatin, Taxotere and then hooked up for four days of 5FU though the port via a pump in a fanny pack.
Friday in to have the 5FU pump off, and the port flushed after hydration...
Back in on Monday for an injection of Neulasta to help with blood counts, and if needed more hydration... Then done for two weeks...
After that nine week, the tumor actually dissolved away, never to be seen again.
But I wasn't finished, ENT advised (upfront), that I do an additional seven weeks of concurrent. Carboplatin every Monday, followed with radiation that day, and everyday the remainder of the week.
Each day just before radiation, I had an injection in my stomach of Amifositne, to help keep any think ropey phlegm away, and maybe help with the salivary glands. I never had any of the thick choking phlegm many have problems with.
Now at nearly five years from the original Dx, I have all taste, 95% of my saliva back. All clean scans, not on any meds, and very basically no side effects....
It's a rougn treatment, but very doable.... A few keys that have been mentioned, a positive attiude, stay very well hydrated and take in a lot of calories.... Food will taste like crap, if at all, water tastes like dirty sweat socks, or sweat at best...
I switched over to Ensure Plus and ditched food half way through treatment, and for several weeks after while the throat was still cooking...
Bottom line, you don't eat and drink becasue it tastes good or is enjoyable..., you do it to stay alive... It's hydration and calories...
You can do it, we all have..., and survivor rates are very good.., for both us that were HPV+ and for those that weren't...
Best,
John
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Multiple Docs
Hi Betty, So sorry your both going through this. My cancer was completely different, but I had the same issues with Doctors. I kept going back and saying my symptoms over and over for 3 years. I now have a 40% chance of survival for 5 years. I sued and I won. Contact an attorney, your doctors were clearly negligent.
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SCC Tonsil
So glad you found us. I had SCC in my left tonsil and two left lymph nodes. It was stage 3 and I was HPV positive. It has been 18 months since I finished the radiation. I had 6 weeks of chemo and then 6 weeks of radiation. The radiation is very painful, but is doable. It will not be fun, but you can survive. My life is good now and I am glad I made it through without lots of bad side effects. Stay close to this site as you go through the chemo and rads. You can get a lot of useful information.
Ann
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Thats a lot of knods....geez.bettyannew said:question
What is neck dissection? 29 knods removed, all in the neck. Tonsil removed on both sides. Was the surgery before radiation or after.
Thats a lot of knods....geez.
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His doctor said, rad andphrannie51 said:Betty...different GP's seem to
be better at different things. The first primary care Doc I saw, was very concerned about a spot on my calf...it turned out to be SCC, also and he removed that....when I pointed out the lump in my neck, he gave me antibiotics....I wasn't nevous about my leg at all...glad that they removed the skin cancer, but my head was scearming..."YEAH...but what about this thing on my NECK!!!" This was at Urgent Care. When I went back to get the stitches out of my leg, I pointed out my neck again....what did he do? He refered me to another GP in their regular office (which took 2 weeks)....and what did that Dr. do? Felt my neck for 3 seconds an referred me to an ENT (that took a month to get in).....He did a needle biopsy, and I found out I had SCC of the throat within two days....Ah..but the run around wasn't over....it took another month to get into an Oncologist and the Radiologist....and I had to refer myself (both specialists thought I was crazy at first when I did my own calling). It wasn't till I got here, that I found out that this is so so normal for our disease.
The neck dissection is where they go in and take out lymph nodes....some have many taken out, some have only a few. Some Drs. (as in my case) wait till after rads and chemo, and the first PET scan after treatment to decide if they will go in and take them out. Some do the surgeries before. I'm sure your husband will get his tonsils out before treatment, but I can't guess what the plans are for his lymph nodes. My nodes were completely cancer free after treatment, and have remained that way for over a year. Your husband will have a PET scan before they do any of this so the surgeon can see what areas are affected.
I know you feel like you have been dumped in a foreign country....you don't know the language or the customs....but if you hang out here, we'll translate for you.....Again....let me tell you that your hubby will be ok.....This is very tough treatment (my Onc told me that the only other cancer treatment that is worse than what we go through is Bone marrow)....
For the time being feed him all his favorite meals.....tell him to eat seconds.....this is a time to put on some weight, as most of us lost weight during chemo and rads.....eating does get difficult, and many of us ended up with PEG tubes (a tube that goes directly into the stomach....we just poured our water and our Ensures down that). But it's all temporary....Matt said that 6 months from the start of treatment, and you'll be arm wrestling over the remote again....he's right on the money.....this is but a bump in the road....you'll be sailing on pavement once again.
p
His doctor said, rad and chemo first. He said and that is when I didnt understand, regards to surgery, said it would leave him disfigured? Disabilied, and a it was a major surgery... I dont understand, dr. Did say the knod isnt a problem. I think ge said, take out his tongue, and parts of his throat? Really? ?? How can someone live like this...im sorry, but my husband wont have this done if it came to this. Why did the dr tell us this....started in his tonsil, than sprend to his tongue, and throat, and a knod. Im very worried...
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What is the survival for thisj4mie said:Hang in there...
Hi Betty,
I (as caregiver) am one of the people P refers to above as in the middle of treatment. My husbands diagnosis was very similar to your husbands. Pat, my husband, also went to the Dr. complaining for a while until the Dr. ran out of any other ideas but to do a FNA. By the time we finally understood that it was tonsil cancer, my husband had had a swollen lymph node for several months. Anyway, we are here now, he is receiving treatment (complete tonsillectomy, neck dissection with removal of 29 nodes and 16 more rads to go until we get to ring the finish bell), and so far all is well.
As people have mentioned above, it is pretty common for this type of cancer to be more advanced by the time it is finally diagnosed, and it is very treatable most times even though it is advanced. In our exoerience so far, the time spent waiting from the diagnosis to the actual start of treatment is one of the worst times. So, my best advice to anyone who is just starting the journey is to hang in there, try to take one day at a time and don't fret if you do have a set back (most of the people on here have had a set back or two before being able to start the 'plan of attack') Lastly, prepare for what is coming the best you can (Super Thread - first post on the page). We're all here if you have any other questions!
Jamie
ps- one more thing...there is a thread on here about how long everyone has survived. I find it very inspirational, and when I am having a 'down day' thinking about everything we are going through I go back and look at it. It might help ease your mind a bit to read through it, it's proof that life really does go on
What is the survival for this type of cancer...this type isnt a curable one is it? I had hodgken lymphomia, and went through 6 months of chemo only. 4 chem. Through my port, took around 5 hours, this was done every 3 weeks, this was 12 years ago... I was told it was a cureable type of cancer. Im thinking to much here.
I
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The Dr. may bebettyannew said:His doctor said, rad and
His doctor said, rad and chemo first. He said and that is when I didnt understand, regards to surgery, said it would leave him disfigured? Disabilied, and a it was a major surgery... I dont understand, dr. Did say the knod isnt a problem. I think ge said, take out his tongue, and parts of his throat? Really? ?? How can someone live like this...im sorry, but my husband wont have this done if it came to this. Why did the dr tell us this....started in his tonsil, than sprend to his tongue, and throat, and a knod. Im very worried...
thinking that they will do the rads and chemo first to shrink the tumors...maybe even eliminate them....removing a small tumor being easier on the patient for sure. Where is your hubby being treated....if you don"t mind me asking?
p
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In 4 days, this coming upphrannie51 said:Betty...different GP's seem to
be better at different things. The first primary care Doc I saw, was very concerned about a spot on my calf...it turned out to be SCC, also and he removed that....when I pointed out the lump in my neck, he gave me antibiotics....I wasn't nevous about my leg at all...glad that they removed the skin cancer, but my head was scearming..."YEAH...but what about this thing on my NECK!!!" This was at Urgent Care. When I went back to get the stitches out of my leg, I pointed out my neck again....what did he do? He refered me to another GP in their regular office (which took 2 weeks)....and what did that Dr. do? Felt my neck for 3 seconds an referred me to an ENT (that took a month to get in).....He did a needle biopsy, and I found out I had SCC of the throat within two days....Ah..but the run around wasn't over....it took another month to get into an Oncologist and the Radiologist....and I had to refer myself (both specialists thought I was crazy at first when I did my own calling). It wasn't till I got here, that I found out that this is so so normal for our disease.
The neck dissection is where they go in and take out lymph nodes....some have many taken out, some have only a few. Some Drs. (as in my case) wait till after rads and chemo, and the first PET scan after treatment to decide if they will go in and take them out. Some do the surgeries before. I'm sure your husband will get his tonsils out before treatment, but I can't guess what the plans are for his lymph nodes. My nodes were completely cancer free after treatment, and have remained that way for over a year. Your husband will have a PET scan before they do any of this so the surgeon can see what areas are affected.
I know you feel like you have been dumped in a foreign country....you don't know the language or the customs....but if you hang out here, we'll translate for you.....Again....let me tell you that your hubby will be ok.....This is very tough treatment (my Onc told me that the only other cancer treatment that is worse than what we go through is Bone marrow)....
For the time being feed him all his favorite meals.....tell him to eat seconds.....this is a time to put on some weight, as most of us lost weight during chemo and rads.....eating does get difficult, and many of us ended up with PEG tubes (a tube that goes directly into the stomach....we just poured our water and our Ensures down that). But it's all temporary....Matt said that 6 months from the start of treatment, and you'll be arm wrestling over the remote again....he's right on the money.....this is but a bump in the road....you'll be sailing on pavement once again.
p
In 4 days, this coming up Monday, my hubby has his mapping etc ( I think it called that) at 930am, than he will have his PET Scan at 1130am. Special diet, and they said it will take 2 hours? Why 2 hours? Do we get the results that day? So this PET scan gives us the whole picture here, where the cancer is right? Again, im thinking to much, and my anxiety is high right now, my husband is asleep, where I should be, I dont work outside the home, I do enough work here, im doing laudry... night time is the only time I dont have phone ringing, med time, not just for my husband, but I care for my 88 yr old mom....my mom is difficult, my husband is a piece of apple pie!!!! Dec 2009 is when we started caring for her..been an adjustment for sure..
You know im thinking way ahead here, and im getting scared, etc all over again..... I just want my husband to be ok, id better, do something else here.
Betty Anne
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Hes being treated at Sutterphrannie51 said:The Dr. may be
thinking that they will do the rads and chemo first to shrink the tumors...maybe even eliminate them....removing a small tumor being easier on the patient for sure. Where is your hubby being treated....if you don"t mind me asking?
p
Hes being treated at Sutter Cancer Center in Sacramento, ca.
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How do you find out if youCivilMatt said:I have walked in your shoes
Betty,
Welcome to the H&N forum, so sorry to hear why it took s bit of time to figure out. Now that you are developing your team, things will begin to move towards treatments and recovery and believe you me you both will recover and move forward.
I was stage IVa, scc, bot, hpv+ & 1 lymph node (surgery radiation & Erbitux). The virus they referred to was probably the hpv. There is mounting evidence to support (good) cure rates if the cancer patient is hpv+. Regardless, of being + or - , the treatment regimen is similar with very good cure rates for either.
Thinking about your fears made me relive the first few months and how I was once a “cancer rookie”. I don’t know how my name came up in the cancer pool, it just did and the advice I got from my H&N friends made it VERY manageable.
In 6 months you will be arm wrestling for the remote and most of this will be behind you.
You will be fine,
Matt
How do you find out if you have the virus or not. My husbands dr did tell us about it, said having the virus doesnt change thevtreatment, I cant remember how the dr told us, I think its better to treat with the virus.the treatment works better with the virus.
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He has it right with God, heHondo said:Hi Betty
OK it’s bad but most of us here are use to getting bad news, I had NPC and my C came back 3 times and I gave it a fight all three time. I have been in remission on and off for the last 7 years so the good news is you can get through it. You as his caregiver will need to be right there for him giving him hope and courage to keep focus on getting through this. Get as many people to keep him in prayer as possible, you might not believe this but there is power in pray. For now I too will also pray for the both of you.
God Bless
Hondo
He has it right with God, he reads his bible everyday, faithfully attends church, Sunday school, A lot of people are praying for him.... you areone tough person. I wish you the best..
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We're going for a cure...bettyannew said:What is the survival for this
What is the survival for this type of cancer...this type isnt a curable one is it? I had hodgken lymphomia, and went through 6 months of chemo only. 4 chem. Through my port, took around 5 hours, this was done every 3 weeks, this was 12 years ago... I was told it was a cureable type of cancer. Im thinking to much here.
I
Hi again Betty. Acutally, 29 nodes isn't all that many. Each persons body contains hundreds of lymph nodes throughout.
The survival rate for my husbands cancer is good. When we met with our Oncologist the first few times I had asked her what the pronosis was and she said, "I'm going for a complete cure!" So, we have a lot of hope (and confidence in our Dr.) that she can make it happen
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sounds a lot like my
sounds a lot like my story....with my primany doc....he missed it too...but when I finally asked for someone to scope out my throat and find out why sometimes I was hoare...they found stage 4 in my laranyx....it was the virus kind which is hpv ....if your husbands is this is good news it is a far maore sensitive cancer to radiation....meaning radiation seems to be much more effective...at least this is what they told us...I just finished my treatment five weeks ago and am in the waiting stage after to get a pet scan to see how effective the treatment was....so I can relate to the anxious feelings and have recieved many encouraging words from people on this site.....that with the attitude that worring and stress though hard not to do....does not change my outcome...try to remain focused on the positive....I really think that attitude has a big impact....our thoughts and prayers are with you and if I can be any help with anything dont hesitate to ask...
Benjamin
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Luckily for usbettyannew said:hi
Yes its 6 to 7 weeks, oops, I said it wrong. Im very tired, not sleeping well, havent in months, worried on his throat and ear issue.. I dont understand, I looked down his throat, it looked like cancer, does a leg or arm has to fall off before your primary doctor listens to the patient. To get his attention....all the test came back negative for strep...still prescribed him a z pack....the cancer dr asked, did the z pack work. No, didnt make it look better, and he didnt feel better....
we have the best primary doctor in the world.
She had a feeling something was not right in Sept. 2012 but hubby did not worry about it. I took him in March 2013 as he had the flu and his cough would not go away.
She asked him if he had gotten teh CT scan back in Sept (knowing he had not). She showed me his tonsil and she knew. CT was that night.
She called 2 days later and had him to an ENT in 2 days. The first ENT said we need to get you to U of M now. I knew some people that worked there and made the call myself. Had him at the CCC in less than a week.
Every person that had seen him knew right away he had cancer. Yet it still takes time to set up with FNA, bipsies, radiation, chemo, scans, mask.
It feels like forever but once you start it really does go fast.
We had things like thrush and feeding tube at 2.5 weeks in. Our medical oncologist made sure he had anything and everything he needed, Nasuea meds, pain pills, magic mouthwash, Mugard, anti-anxiety. If they thought he needed it we had it.
The U of M has the best crew of docs and nurses that you could hope for in this fight. Everyone one of them was empathetic and caring.
Sandy
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Tomorrow is our big day.benjamin2121 said:sounds a lot like my
sounds a lot like my story....with my primany doc....he missed it too...but when I finally asked for someone to scope out my throat and find out why sometimes I was hoare...they found stage 4 in my laranyx....it was the virus kind which is hpv ....if your husbands is this is good news it is a far maore sensitive cancer to radiation....meaning radiation seems to be much more effective...at least this is what they told us...I just finished my treatment five weeks ago and am in the waiting stage after to get a pet scan to see how effective the treatment was....so I can relate to the anxious feelings and have recieved many encouraging words from people on this site.....that with the attitude that worring and stress though hard not to do....does not change my outcome...try to remain focused on the positive....I really think that attitude has a big impact....our thoughts and prayers are with you and if I can be any help with anything dont hesitate to ask...
Benjamin
Tomorrow is our big day. Mapping in the morning, than we go to get that PET scan done. They say 3 hours. Wed with the chemo dr.. than I dont know. Get all the results, and start the rad and chemo.
As for that virus, dont know how long it takes. Does it come back from the biospe they did? That was close to 2 weeks.
Once we got to the cancer rad dr. Everything seems to be getting done very fast. If I didnt demand a referral it would look worse than it is...
His primary dr. 8 or more months ago told my hubby, that is why you have pillow cases, ( his ear felt like it was draining, and he had pain) wish us luck. Been busy making copies, filling out paper work etc. A long process. We are telling our kids once we get all the information,
Thats going to be the hardest..
Will let you all know what happens tomorrow. Will they tell us anything?
Bettyanne
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So far, once I demanded anrobswife87 said:Luckily for us
we have the best primary doctor in the world.
She had a feeling something was not right in Sept. 2012 but hubby did not worry about it. I took him in March 2013 as he had the flu and his cough would not go away.
She asked him if he had gotten teh CT scan back in Sept (knowing he had not). She showed me his tonsil and she knew. CT was that night.
She called 2 days later and had him to an ENT in 2 days. The first ENT said we need to get you to U of M now. I knew some people that worked there and made the call myself. Had him at the CCC in less than a week.
Every person that had seen him knew right away he had cancer. Yet it still takes time to set up with FNA, bipsies, radiation, chemo, scans, mask.
It feels like forever but once you start it really does go fast.
We had things like thrush and feeding tube at 2.5 weeks in. Our medical oncologist made sure he had anything and everything he needed, Nasuea meds, pain pills, magic mouthwash, Mugard, anti-anxiety. If they thought he needed it we had it.
The U of M has the best crew of docs and nurses that you could hope for in this fight. Everyone one of them was empathetic and caring.
Sandy
So far, once I demanded an referral ENT Specialist, we was in his office less than 1 week, rad dr. In 3 days, mapping 4 days, 2 days after mapping the chemo dr. Boom, boom!! I put up sticky notes every where my husband goes during the day in our house. Reminders, encouragements, etc....I will change them as needed.
He cried this am, as he read them all and loved them. Reminds him how lucky he is to have me as his wife of 35 plus years. Thanks to you all
Bettyanne
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Crying...bettyannew said:So far, once I demanded an
So far, once I demanded an referral ENT Specialist, we was in his office less than 1 week, rad dr. In 3 days, mapping 4 days, 2 days after mapping the chemo dr. Boom, boom!! I put up sticky notes every where my husband goes during the day in our house. Reminders, encouragements, etc....I will change them as needed.
He cried this am, as he read them all and loved them. Reminds him how lucky he is to have me as his wife of 35 plus years. Thanks to you all
Bettyanne
I'd be crying too if my wife pasted sticky notes everywhere for me, LOL...
OK, just teasing..., my abi-normal humor was kicking in...
JG
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My husband was misdiagnosed
My husband was misdiagnosed for three years by 3 different ENTs. When fianlly diagnosed he was stage four with two lymph nodes involved. He had 35 rads and 2 chemo, was suppose to have 3 chemo but had to stop due to kidney damge. I agree with the person who said get the tube. You do not want him going through that during treatment. Praying for you both. Debbie
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FALLING APART
HI,
I CAN UNDERSTAND YOU DILEMMA. I AM 2 1/2 YEARS OUT OF TREATMENT FOR BASE OF TONGUE AND LYMPH NODE STAGE 4a. wHEN FIRST DIANOSED I HAD A BEEBEE SIZED NODE. WHEN TREATMENT BEGAN IT WAS THE SIDE OF A LARGE MARBLE AND WAS IMPACTING MY ABILITY TO USE MY TONGUE TO SPEAK. I THINK WE ALL HAVE THOSE MOMENTS OF FALLING APART AND PERHAPS SPEND A LITTLE TOO MUCH TIME DELVING INTO THE DARK SIDE. I AM HERE AND MANY OTHER MEMBERS ARE HERE BECAUSE THE SUCCESS RATE TOWARDS THIS TYPE OF CANCER IS VERY HIGH. I DID HAVE AN AGRESSIVE TREATMENT PLAN THAT WAS MY CHOICE. I HAD NO SURGERY BUT OPTED FOR 10 DAYS OF CHEMO AND FRACTIONAL RADIATION FOR 7 WEEKS. FRACTIONAL RADIATION IS TWICE A DAY. I CAN HONESTLY TELL YOU THAT I NEVER GOT SICK, NEVER MISSED A DAY OF TREA5TMENT. I DON'T WANT TO SUGAR COAT THIS. THE TREATMENT IS PAINFUL BUT MEDS ARE AVAILABLE FOR THAT. NAUSEA CAN HAPPEN BUT THERE ARE MEDS FOR THAT.
I STUDIED THE OPTIONAL TREATMENTS AND EVEN HAD THREE OPINIONS. I CHOSE THE MOST AGRESSIVE BECAUSE I LIKE A GOOD FIGHT AND ALWAYS PLAN ON WINNING. I DID AND STILL HAVE SIDE EFFECTS OF THE TREATMENT BUT THEY ARE NOTHING IN COMPARISON TO THE ALTERNATIVE. IT'S A ROCKY ROAD WE TRAVEL BUT IT IS WINABLE. WHOMEVER YOU CHOOSE FOR A MEDICAL TEAM LET THEM KNOW THAT YOU PLAN ON BEING AA ACTIVE MEMBER OF YOUR RECOVERY. THOUGH I DID NOT OPT FOR THE CANCER TREATMENT CENTERS OF AMERICA I LEARNED MUCH WHILE I WAS THERE. A PATIENTS ATTITUDE IS THE GREATEST TOOL FOR RECOVERY.
KNOWN FOR A WICKED SENSE OF HUMOR HELPED ME GREATLY. HOWEVER, KEEP IN CONTROL AND DON'T BE CRACKING JOKES WHILE USING A FEEDING TUBE! IF YOU DON'T HAVE ONE, GET A RECLINER. IT HELPS WHILE USING THE FEEDING TUBE AND IS AN ASSET WHEN TRYING TO SLEEP. YOU'RE GOING TO LOSE YOUR SENSE OF TASTE FOR AWHILE, YOU WON'T FEEL LIKE EATING BUT PLEASE KEEP THE FLUIDS UP AND THE TUIBE WILL HELP WITH THAT. THINK PROTEIN.....IT HELPS COMBAT THE ANEMIA WHICH YOU MAY GET DURING TREATMENT.
KEEP IN MIND WHEN YOU BEGIN TO THINK ABOUT THE ODDS. ALMOST EVERYONE YOU CHAT WITH ON THIS SITE....SURVIVED.
PRAYERS ARE WITH YOU,
BRUCE
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