Diagnosed last Monday (Squamous Cell -throat cancer)
I'm very new at this. I had a lymph node removed a week ago and when the results of the biopsy came back the ENT surgeon said it really surprised him and his colleague, as they were sure it was Hodgkin's lymphoma, but it turned out to be Squamous Cell and throat cancer with an unknown primary.
I'm to undergo a Pet scan and a CT scan this coming Monday and then surgery to remove one tonsil Wednesday. I survived pancreatic cancer and radical re-constructive surgery (Whipple procedure)in 2001, but I did not undergo any radiation or chemotherapy. I'm a 57 year old single dad with a healthy 17 year old daughter and a 14 year old son that has been fighting leukemia three years this week. His daily regimen of chemotherapy ends this coming April if all goes well. From reading everyones input on here I quickly realized that I was not at all informed or prepared as to what I'm really in for. There was absolutely nothing mentioned to me regarding any of the several issues brought up here. My greatest concern are my children, I was awarded sole custody this year, removing them from a very dangerous and abusive environment where both children were physically and mentally abused on a near daily occurrence. If something happens to me there is no one left for them to go to and I had assumed I would only be down for a fairly short time. The surgeon did tell me that I was going to receive a large amount of both radiation and chemotherapy but I had stupidly assumed that he meant a one time session.
Please, if anyone has any advise I'm all ears!
Thank you,
Scared dad
Comments
-
Just my experience
Hi JD,
I am 12 weeks out from treatment. I had Stage 1 Cancer of the Left tonsil with some uptake in two nodes nearby (uptake of the dye used in the PET/CT).
Mine all happened very quickly. Found the growth on my tonsil Sunday, ENT visit Monday and Biopsy taken, results Thursday, PET CT Friday. I consulted the 3 Doctors when the results were back Friday afternoon: ENT Surgeon, Oncoman 1 (Rad) and Oncoman 2 (Chemo).
We settled on Surgery to remove the tumor (via the mouth) and then I started Target Therapy (Chemo) with Erbitux and a week later started Radiotherapy (IMRT = Intensity Modulated RT) for 7 weeks so I had 70 hits of radiation (2 x a day) and the Erbitux 1 x a week. I went in for the surgery on the following Monday as I said .... no mucking about.
Everyone reacts differently as you will gather going back through these pages.
I didn't get a second opinion and wasn't prepared for the rough time ahead. I started losing weight once the treatment started so in week 3 had a PEG installed. Many people suggest to get the PEG before you start treatment assuming you go through a similar treatment regime. (I don't know what stage and as you mention the Primary is not confirmed).
I lost 20kgs (~44lb) from 93 to 73kgs. I have only regained 2 kg so far as I am eating fairly healthy whole foods now so it is hard to put on weight.
Some people continue work right through their treatment. I was hospitalized for nearly 4 weeks till a few days after treatment ended, then had to go back after being out for two weeks as I hit a bad patch with depression and pain.
You may have a completely different treatment regime and different Chemo to what I did but just so you know one of the possible options. I think the radiation knocked me around the most and the after effects are also a nuisance but you can live with them. Depending on where they direct the radiation, you may lose some or all of your salivary gland function which does mean eating habits change and you will need to accompany meals with water or a soup. Extra dental care is also imperative.
Recovery times vary as I said earlier. I am feeling pretty good now and have started a mild exercise program of swimming and bit of bike riding. I also take a bunch of supplements prescribed by Naturopaths to assist in healing and recovery.
You sound like a tough character having been through one cancer battle so I am sure you will also manage this one and you have good reasons to fight on.
I trust this feedback is of some use and I'm sure you will get more posts. You may want to follow up with results of your scans so the others here can contribute with more specific information.
All the best next week.
Regds
Scambuster0 -
Squamous Cell Carcinoma - Base of Tongue - T1N0M0 - 57 y.o. male
I am new to this forum and would like to tell my story too so that others may benefit from my personal experience. I am a 57 y.o. white male. Light smoker, stopped over 20 years ago and very little alcohol use.
This time last year I had a persistent sore throat and went to the VAMC for an evaluation. My PCM referred me to the ENT clinic where I saw a series of ENT Residents (read student ENT's) who misdiagnosed me with GERD and put me on Nexium and then thought I had something going on in the Lingual Tonsil area, but wanted to take a "watchful waiting" approach to see what develops, then they diagnosed my problem as being nerve related and said it was Glosso-Pharyngeal Nueralgis and put me on Carbamazapine.
A total of 4 months passed before they decided that it was something else and did a CT Scan, but didn't see anything, but wanted to do a Panendoscopy w/ biopsy. I lost faith in the VA and requested an outside consult. The outside ENT sent me for a total of 2 MRI/MRA's before they finally saw the tumor in the base of my tongue measuring 2.5cm x 2.4cm x 3.8cm. He then did a surgical biopsy, but it was inconclusive and he did an in office puncture biopsy on the underside of my tongue, but it too was inconclusive. He finally did a PET Scan, but the surgical biopsy caused the cancer site to light up because of the healing biopsy site. He wanted to do another surgical biopsy to go deeper, but I decided to go back to the VA for another opinion from the head of the ENT department (no more students!).
We are now at month 8 since I first complained of a sore throat. The VA did the second surgical biopsy and found that I have Squamous Cell Carcinoma of the Base of Tongue with HPV (Human Pappillo Virus)involvement. Not the diagnosis I have hopped for, but at long last we know something and could start to deal with it. The pain for the past several months from the tumor pushing against the nerves was excruciating and required MSContin and Hydrocodone around the clock. I lost 60 pounds before I got my diagnosis and had two hospital stays for dehydration, UTI and uncontrolled tremors.
I then went through a series of consults to decide the best course of treatment for me. The VA dentist wanted to pull all my teeth in my lower jaw because they said that the VA did not have the new radiation technology (IMRT)like you see on the outside. I again had second thoughts about using the VA for my care and choose a civilian Oncology center. They said that the IMRT would allow we to save my teeth, but I would have to take extra care in flossing and brushing with a special flouride toothpaste for the rest of my life, along with for frequent dental visits. I can handle that if I can keep my teeth.
I also elected to have a PEG tube placed before I started any treatments since healing can be an issue if you do it later during treatment.
I started chemo treatment with Erbitux on 1 Dec 2009 and have had 4 of 8 treatments so far. I started IMRT radiation on 9 Dec 2009 and have had 12 of 35 treatments so far.
I broke out in a purple rash on my chest and an acne like rash all over my scalp, face and neck. The doctor presribed a antibiotic lotion and pads and it is clearing up nicely. They also had free samples of Aquaphor that I use to keep the skin moisterized.
I was able to eat soft foods up until I had about 10 radiation treatments and had to use the PEG exclusively. My my tongue and throat are pretty sore, but the pain meds help a lot. My lips are blistered so I keep them covered up with a salve.
I saw a nutritionist/dietician early on so my weight has been stable. She put me on Jevity 2.0 which is concentrated so I don't need as many cans.
One of the most uncomfortable things has been the dry mouth, particularly at night. I use a variety of Biotene products and find the gel the best for night use because it last the longest. I wake up throughout the night for pain meds and use some more Biotene before going back to sleep. I use Benadryl to make me sleepy and don't need any other sleep meds.
The lessons I learned from all this is not to ignore the symptoms and don't take the first diagnosis as the correct one and that I have more will to live than I ever would have imagined.
Life is worth living so persevere and fight on. Good luck to all0 -
Sorry to hear
Chefdaddy- I think you need to get things spelled-out for you from your Onco, and what to expect down the road. And, to possibly make inquiries about Social Services, or someone to help. As Scambuster said- everyone is different in regards to the specific C: when it was caught and how far it has advanced, and there are different treatments. Perhaps your Onco can customize your treatment regime to help you cope with your responsibilities. AND, MOST AREAS HAVE C SUPPORT GROUPS, such as Gilda's Club, who may be able to help. You describe a history w/C, so you may already be aware of what is out there to help you.
For me, NPC, there were a good two months that I would not have been capable of caring for others. Your daughter is 17, and if she can drive, that will be necessary. It will be one heckuva lot for her to deal with, Chef. A very lot. I also had an unknown Primary- which meant full head and neck rads (31 full, and 3 partials) for me, along with two 4-day Cisplatin and Flourouracil pump times. There's no quick-fix to head and neck, Chef. Again- I would advise speaking with your Onco about the road ahead.
kcass0 -
Thank you Scambuster andKent Cass said:Sorry to hear
Chefdaddy- I think you need to get things spelled-out for you from your Onco, and what to expect down the road. And, to possibly make inquiries about Social Services, or someone to help. As Scambuster said- everyone is different in regards to the specific C: when it was caught and how far it has advanced, and there are different treatments. Perhaps your Onco can customize your treatment regime to help you cope with your responsibilities. AND, MOST AREAS HAVE C SUPPORT GROUPS, such as Gilda's Club, who may be able to help. You describe a history w/C, so you may already be aware of what is out there to help you.
For me, NPC, there were a good two months that I would not have been capable of caring for others. Your daughter is 17, and if she can drive, that will be necessary. It will be one heckuva lot for her to deal with, Chef. A very lot. I also had an unknown Primary- which meant full head and neck rads (31 full, and 3 partials) for me, along with two 4-day Cisplatin and Flourouracil pump times. There's no quick-fix to head and neck, Chef. Again- I would advise speaking with your Onco about the road ahead.
kcass
Thank you Scambuster and Kent for responding. Your input is extremely helpful.
When I went through the pancreatic cancer in 2001, It happened very fast, I knew nothing about the radical surgery procedure or about the surgeon, but soon found out that both were very bad! The process happened so fast once they finally found the tumor on my pancreas and in my small intestine that it all became like a blur. To make things even more complicated I also have a blood disorder called Coproporphyria, which comes with a long list of drugs that are considered unsafe to the point of life threatening. The small hospital where the procedure was done had pharmacists stationed on each floor and even though I supplied them with both lists of safe and unsafe drugs they repeatedly gave me drugs and medications that were on the unsafe list. One pain medication put me in a comma for three days. I now live in a semi large city and being treated at a teaching university hospital. The recovery took almost four years as the surgeon forgot to put a hole in what was left of my stomach when he re-connected it to the intestine. It was a mess. I lost 125lbs. after the surgery. I look back now and that was nothing compared to what you people are going through. I am very scared, I have a very difficult time with pain medications, a tiny amount makes me very ill and stops my breathing. In 1981 I was working for an equipment manufacturer as an electrician and I was sprayed with a highly toxic chemical that burned the tops of both lungs. I cough all the time and if I'm on any pain medications my O2 stats drop quickly. I don't know if they can do anything to help me not cough after the surgery, I'm dreading this based on everything I've been reading here about the pain involved after having tonsils removed and the effects of radiation. Unfortunately my daughter doesn't drive but she is very smart when it comes to anything medical, as she helps her brother everyday with his leukemia and his chemo medications. I am definitely going to look into what assistance might be available through Social Services, I know they have people at the hospital.
I do thank you so very much as the information that everyone shares on this site is so very valuable.
Chefdaddy0 -
I'm terribly sorry Ctfitztx,ctfitztx said:Squamous Cell Carcinoma - Base of Tongue - T1N0M0 - 57 y.o. male
I am new to this forum and would like to tell my story too so that others may benefit from my personal experience. I am a 57 y.o. white male. Light smoker, stopped over 20 years ago and very little alcohol use.
This time last year I had a persistent sore throat and went to the VAMC for an evaluation. My PCM referred me to the ENT clinic where I saw a series of ENT Residents (read student ENT's) who misdiagnosed me with GERD and put me on Nexium and then thought I had something going on in the Lingual Tonsil area, but wanted to take a "watchful waiting" approach to see what develops, then they diagnosed my problem as being nerve related and said it was Glosso-Pharyngeal Nueralgis and put me on Carbamazapine.
A total of 4 months passed before they decided that it was something else and did a CT Scan, but didn't see anything, but wanted to do a Panendoscopy w/ biopsy. I lost faith in the VA and requested an outside consult. The outside ENT sent me for a total of 2 MRI/MRA's before they finally saw the tumor in the base of my tongue measuring 2.5cm x 2.4cm x 3.8cm. He then did a surgical biopsy, but it was inconclusive and he did an in office puncture biopsy on the underside of my tongue, but it too was inconclusive. He finally did a PET Scan, but the surgical biopsy caused the cancer site to light up because of the healing biopsy site. He wanted to do another surgical biopsy to go deeper, but I decided to go back to the VA for another opinion from the head of the ENT department (no more students!).
We are now at month 8 since I first complained of a sore throat. The VA did the second surgical biopsy and found that I have Squamous Cell Carcinoma of the Base of Tongue with HPV (Human Pappillo Virus)involvement. Not the diagnosis I have hopped for, but at long last we know something and could start to deal with it. The pain for the past several months from the tumor pushing against the nerves was excruciating and required MSContin and Hydrocodone around the clock. I lost 60 pounds before I got my diagnosis and had two hospital stays for dehydration, UTI and uncontrolled tremors.
I then went through a series of consults to decide the best course of treatment for me. The VA dentist wanted to pull all my teeth in my lower jaw because they said that the VA did not have the new radiation technology (IMRT)like you see on the outside. I again had second thoughts about using the VA for my care and choose a civilian Oncology center. They said that the IMRT would allow we to save my teeth, but I would have to take extra care in flossing and brushing with a special flouride toothpaste for the rest of my life, along with for frequent dental visits. I can handle that if I can keep my teeth.
I also elected to have a PEG tube placed before I started any treatments since healing can be an issue if you do it later during treatment.
I started chemo treatment with Erbitux on 1 Dec 2009 and have had 4 of 8 treatments so far. I started IMRT radiation on 9 Dec 2009 and have had 12 of 35 treatments so far.
I broke out in a purple rash on my chest and an acne like rash all over my scalp, face and neck. The doctor presribed a antibiotic lotion and pads and it is clearing up nicely. They also had free samples of Aquaphor that I use to keep the skin moisterized.
I was able to eat soft foods up until I had about 10 radiation treatments and had to use the PEG exclusively. My my tongue and throat are pretty sore, but the pain meds help a lot. My lips are blistered so I keep them covered up with a salve.
I saw a nutritionist/dietician early on so my weight has been stable. She put me on Jevity 2.0 which is concentrated so I don't need as many cans.
One of the most uncomfortable things has been the dry mouth, particularly at night. I use a variety of Biotene products and find the gel the best for night use because it last the longest. I wake up throughout the night for pain meds and use some more Biotene before going back to sleep. I use Benadryl to make me sleepy and don't need any other sleep meds.
The lessons I learned from all this is not to ignore the symptoms and don't take the first diagnosis as the correct one and that I have more will to live than I ever would have imagined.
Life is worth living so persevere and fight on. Good luck to all
I'm terribly sorry Ctfitztx, I didn't realize until after I hit the Post Comment button that I had not listed you for responding as well. thank you! Your detailed account of your experience and the medications you use is very helpful to me. I have very bad teeth due to massive doses of corticosteroids that were inappropriately administered to me in 1990 by a physician for my lung issues. I was scheduled to have that done a year ago but that's when the custody battle started and I kept having to cancel the procedure due to ever changing court dates. The surgeon told me last Monday when I learned I had cancer, that he wanted to have my teeth removed but no more was said so I don't know if he meant before the surgery this coming Wednesday or afterwards before the radiation. As was mentioned, I need a lot of clarification by my physicians on what to expect.
Again, thank you Ctfitztx
Chefdaddy0 -
Help on hereChefdaddy said:Thank you Scambuster and
Thank you Scambuster and Kent for responding. Your input is extremely helpful.
When I went through the pancreatic cancer in 2001, It happened very fast, I knew nothing about the radical surgery procedure or about the surgeon, but soon found out that both were very bad! The process happened so fast once they finally found the tumor on my pancreas and in my small intestine that it all became like a blur. To make things even more complicated I also have a blood disorder called Coproporphyria, which comes with a long list of drugs that are considered unsafe to the point of life threatening. The small hospital where the procedure was done had pharmacists stationed on each floor and even though I supplied them with both lists of safe and unsafe drugs they repeatedly gave me drugs and medications that were on the unsafe list. One pain medication put me in a comma for three days. I now live in a semi large city and being treated at a teaching university hospital. The recovery took almost four years as the surgeon forgot to put a hole in what was left of my stomach when he re-connected it to the intestine. It was a mess. I lost 125lbs. after the surgery. I look back now and that was nothing compared to what you people are going through. I am very scared, I have a very difficult time with pain medications, a tiny amount makes me very ill and stops my breathing. In 1981 I was working for an equipment manufacturer as an electrician and I was sprayed with a highly toxic chemical that burned the tops of both lungs. I cough all the time and if I'm on any pain medications my O2 stats drop quickly. I don't know if they can do anything to help me not cough after the surgery, I'm dreading this based on everything I've been reading here about the pain involved after having tonsils removed and the effects of radiation. Unfortunately my daughter doesn't drive but she is very smart when it comes to anything medical, as she helps her brother everyday with his leukemia and his chemo medications. I am definitely going to look into what assistance might be available through Social Services, I know they have people at the hospital.
I do thank you so very much as the information that everyone shares on this site is so very valuable.
Chefdaddy
Chefdaddy, sorry to hear of your diagnosis. Now that you found this place, you are not alone. Post your questions and a lot of good people will help all they can. My ENT was equally surprised when my lymph node biopsy came back positive for cancer. They nailed the primary pretty quick when a ENT/cancer surgeon got involved. (SCC base of tongue, one lymph involved) Was scheduled for exploratory surgery and tonsilectomy but ended up keeping my tonsils as Doc thought cancer was very localized after doing his exploratory thing. Did the 6 weeks of chemo and radiation, PEG and a port too, and am now 10 weeks out. I am doing really well. Sounds like you had a really bad time with the last go around. Find a Doc you can trust. This will ease your mind about everything that is going on. I know you are scared. My wife and I were as well. We decided to beat this we needed to take it head on and get started. Once I got going with the treatment, there was no time to be scared. It was all about getting the treatment completed. Wish I could help more. We'll all be here for whatever we can do. Good luck.
Mike0 -
Thank you Mike!Landranger25 said:Help on here
Chefdaddy, sorry to hear of your diagnosis. Now that you found this place, you are not alone. Post your questions and a lot of good people will help all they can. My ENT was equally surprised when my lymph node biopsy came back positive for cancer. They nailed the primary pretty quick when a ENT/cancer surgeon got involved. (SCC base of tongue, one lymph involved) Was scheduled for exploratory surgery and tonsilectomy but ended up keeping my tonsils as Doc thought cancer was very localized after doing his exploratory thing. Did the 6 weeks of chemo and radiation, PEG and a port too, and am now 10 weeks out. I am doing really well. Sounds like you had a really bad time with the last go around. Find a Doc you can trust. This will ease your mind about everything that is going on. I know you are scared. My wife and I were as well. We decided to beat this we needed to take it head on and get started. Once I got going with the treatment, there was no time to be scared. It was all about getting the treatment completed. Wish I could help more. We'll all be here for whatever we can do. Good luck.
Mike
I am so very
Thank you Mike!
I am so very thankful that I accidentally stumbled onto this site, I'm sure the Lord was quietly directing me. When I got custody early this year, I moved to get my son closer to the children's cancer hospital here in Portland Or., so I'm not familiar with anything outside of his hospital. On Monday, while getting the PET and CT, I hope to make contact with a Social Worker and see if there is anything that can be done to assist my daughter in caring for me during the rough times I've been reading about. If I were healthy, other than the cancer issue, I wouldn't be so scared, but having a chronic cough due to lung damage as well as having a rare blood disorder along with being a diabetic (they took most of my pancreas before)I'm very worried about these issues causing unnecessary problems and messing up the recovery process.
I want to thank you and everyone else that contributes to this site, for me it's priceless!
Thank you again
Chefdaddy0 -
Chefdaddy, I totaly feelChefdaddy said:Thank you Mike!
I am so very
Thank you Mike!
I am so very thankful that I accidentally stumbled onto this site, I'm sure the Lord was quietly directing me. When I got custody early this year, I moved to get my son closer to the children's cancer hospital here in Portland Or., so I'm not familiar with anything outside of his hospital. On Monday, while getting the PET and CT, I hope to make contact with a Social Worker and see if there is anything that can be done to assist my daughter in caring for me during the rough times I've been reading about. If I were healthy, other than the cancer issue, I wouldn't be so scared, but having a chronic cough due to lung damage as well as having a rare blood disorder along with being a diabetic (they took most of my pancreas before)I'm very worried about these issues causing unnecessary problems and messing up the recovery process.
I want to thank you and everyone else that contributes to this site, for me it's priceless!
Thank you again
Chefdaddy
Chefdaddy, I totaly feel complete compassion for you at this point in your life. You are in a very sticky situation. It is hard enough being ill, without all the other problems to deal with too. I would get some legal advice for your children. Children can be strong too, when they have to be. You have been through a lot, and I am sure you can handle a wee bit more. Everyone on this site will be praying for you, I am sure. I wish you great strength. There is a lot of information here on this site that will be very helpful and inspiring for you:) Keep us informed:)
Cindy0 -
Chefdaddy
Yes it is a hard rood ahead of you but don’t give up a lot of us here all been there and have made it through. I suggest that you sit down with your children and let them know what you will be going through, your Son will more then likely understand being he has been doing Chemo himself. I am like Kent my Cancer is NPC and I am doing very well because I have a lot of support from friends and family. How are you with religion, believe it or not, but prayer works miracles, doctors can understand why someone who is being prayed for can heal faster then someone who is not being prayed for, Maybe because there really is a God who hears.
We here at CSN are here for one reason to help each other and to give support when one of us are down, so you are very much welcome here with us my friend. Take care and let us know how you are doing0 -
ctfitztxctfitztx said:Squamous Cell Carcinoma - Base of Tongue - T1N0M0 - 57 y.o. male
I am new to this forum and would like to tell my story too so that others may benefit from my personal experience. I am a 57 y.o. white male. Light smoker, stopped over 20 years ago and very little alcohol use.
This time last year I had a persistent sore throat and went to the VAMC for an evaluation. My PCM referred me to the ENT clinic where I saw a series of ENT Residents (read student ENT's) who misdiagnosed me with GERD and put me on Nexium and then thought I had something going on in the Lingual Tonsil area, but wanted to take a "watchful waiting" approach to see what develops, then they diagnosed my problem as being nerve related and said it was Glosso-Pharyngeal Nueralgis and put me on Carbamazapine.
A total of 4 months passed before they decided that it was something else and did a CT Scan, but didn't see anything, but wanted to do a Panendoscopy w/ biopsy. I lost faith in the VA and requested an outside consult. The outside ENT sent me for a total of 2 MRI/MRA's before they finally saw the tumor in the base of my tongue measuring 2.5cm x 2.4cm x 3.8cm. He then did a surgical biopsy, but it was inconclusive and he did an in office puncture biopsy on the underside of my tongue, but it too was inconclusive. He finally did a PET Scan, but the surgical biopsy caused the cancer site to light up because of the healing biopsy site. He wanted to do another surgical biopsy to go deeper, but I decided to go back to the VA for another opinion from the head of the ENT department (no more students!).
We are now at month 8 since I first complained of a sore throat. The VA did the second surgical biopsy and found that I have Squamous Cell Carcinoma of the Base of Tongue with HPV (Human Pappillo Virus)involvement. Not the diagnosis I have hopped for, but at long last we know something and could start to deal with it. The pain for the past several months from the tumor pushing against the nerves was excruciating and required MSContin and Hydrocodone around the clock. I lost 60 pounds before I got my diagnosis and had two hospital stays for dehydration, UTI and uncontrolled tremors.
I then went through a series of consults to decide the best course of treatment for me. The VA dentist wanted to pull all my teeth in my lower jaw because they said that the VA did not have the new radiation technology (IMRT)like you see on the outside. I again had second thoughts about using the VA for my care and choose a civilian Oncology center. They said that the IMRT would allow we to save my teeth, but I would have to take extra care in flossing and brushing with a special flouride toothpaste for the rest of my life, along with for frequent dental visits. I can handle that if I can keep my teeth.
I also elected to have a PEG tube placed before I started any treatments since healing can be an issue if you do it later during treatment.
I started chemo treatment with Erbitux on 1 Dec 2009 and have had 4 of 8 treatments so far. I started IMRT radiation on 9 Dec 2009 and have had 12 of 35 treatments so far.
I broke out in a purple rash on my chest and an acne like rash all over my scalp, face and neck. The doctor presribed a antibiotic lotion and pads and it is clearing up nicely. They also had free samples of Aquaphor that I use to keep the skin moisterized.
I was able to eat soft foods up until I had about 10 radiation treatments and had to use the PEG exclusively. My my tongue and throat are pretty sore, but the pain meds help a lot. My lips are blistered so I keep them covered up with a salve.
I saw a nutritionist/dietician early on so my weight has been stable. She put me on Jevity 2.0 which is concentrated so I don't need as many cans.
One of the most uncomfortable things has been the dry mouth, particularly at night. I use a variety of Biotene products and find the gel the best for night use because it last the longest. I wake up throughout the night for pain meds and use some more Biotene before going back to sleep. I use Benadryl to make me sleepy and don't need any other sleep meds.
The lessons I learned from all this is not to ignore the symptoms and don't take the first diagnosis as the correct one and that I have more will to live than I ever would have imagined.
Life is worth living so persevere and fight on. Good luck to all
Glad to have you here on CSN sounds like you too have been through a lot, I would like to make one suggestion get the teeth pulled now before the radiation treatment it will make it easy on you later. I did not have mine pulled and now 6 years later there are falling a part in my mouth. I can’t open the Jaw very far so it is hard for the dentist to do anything in my mouth. I will be doing some hypobaric treatment sometime next year to get more oxygen in the jaw bone, and then have them all pulled in hope the jaw will heal. If the hypobaric treatment doesn’t work I will loose the lower jaw bone. Make sure the doctor explains all this to you very clearly.
Take care and let us know who you are doing.0 -
MondayHondo said:Chefdaddy
Yes it is a hard rood ahead of you but don’t give up a lot of us here all been there and have made it through. I suggest that you sit down with your children and let them know what you will be going through, your Son will more then likely understand being he has been doing Chemo himself. I am like Kent my Cancer is NPC and I am doing very well because I have a lot of support from friends and family. How are you with religion, believe it or not, but prayer works miracles, doctors can understand why someone who is being prayed for can heal faster then someone who is not being prayed for, Maybe because there really is a God who hears.
We here at CSN are here for one reason to help each other and to give support when one of us are down, so you are very much welcome here with us my friend. Take care and let us know how you are doing
Ditto what Cindy and Hondo said, Chef. You have numerous issues, and history, so it is a lot. The treatment, itself, is not easy to get thru. Please let us know how the PS and CS go on Monday, and how you make-out with the other matters. Portland's big, so there should be the network in place to help you get thru this. I don't know where you are at in regards to faith, but I do hope you have that base covered, so to speak. If not, perhaps this is opportunity.
Believe you can successfully make it over this hurdle, and you will.
kcass0 -
Pain MedsChefdaddy said:Thank you Scambuster and
Thank you Scambuster and Kent for responding. Your input is extremely helpful.
When I went through the pancreatic cancer in 2001, It happened very fast, I knew nothing about the radical surgery procedure or about the surgeon, but soon found out that both were very bad! The process happened so fast once they finally found the tumor on my pancreas and in my small intestine that it all became like a blur. To make things even more complicated I also have a blood disorder called Coproporphyria, which comes with a long list of drugs that are considered unsafe to the point of life threatening. The small hospital where the procedure was done had pharmacists stationed on each floor and even though I supplied them with both lists of safe and unsafe drugs they repeatedly gave me drugs and medications that were on the unsafe list. One pain medication put me in a comma for three days. I now live in a semi large city and being treated at a teaching university hospital. The recovery took almost four years as the surgeon forgot to put a hole in what was left of my stomach when he re-connected it to the intestine. It was a mess. I lost 125lbs. after the surgery. I look back now and that was nothing compared to what you people are going through. I am very scared, I have a very difficult time with pain medications, a tiny amount makes me very ill and stops my breathing. In 1981 I was working for an equipment manufacturer as an electrician and I was sprayed with a highly toxic chemical that burned the tops of both lungs. I cough all the time and if I'm on any pain medications my O2 stats drop quickly. I don't know if they can do anything to help me not cough after the surgery, I'm dreading this based on everything I've been reading here about the pain involved after having tonsils removed and the effects of radiation. Unfortunately my daughter doesn't drive but she is very smart when it comes to anything medical, as she helps her brother everyday with his leukemia and his chemo medications. I am definitely going to look into what assistance might be available through Social Services, I know they have people at the hospital.
I do thank you so very much as the information that everyone shares on this site is so very valuable.
Chefdaddy
HI again Chef Daddy,
After the above post I thought I would list the Pain medications I was given as it may be of some use.
Post Surgery I was in a lot of pain as they took a fair chunk of meat about the size of a half a Lime from my left Tonsil and a tiny bit of the adjoining tongue. In technical terms, my ENT guy said the surgery was not 'Oncologically Sound' because that would require a minimum of a 10mm margin around the tumor i.e Radicalization. To radicalize they would have had to cut into nerve and muscle tissue or done the full head neck resection which is a much heavier procedure.
Fortunately - with the IMRT and Chemo (Erbitux) the success rates were deemed the same so they cut less and then rely on the RT and Chemo to finish off any possible remnants. I also had the slight uptake (1.8) in the PET/CT in the 2 lymphs nodes closest to the tumor.
So I had a nice 'hole' inside my throat and was given shots of Pethadene for about 4 days. I was discharges with a prescription of Paracetamol (Tylenol) and Tramadol. I was only out of hospital 18 hours when I had a melt down with intense pain and had to be rushed back in almost in convulsions and they started Pethadene shots for a while then I started on Lyrica and Morphine syrup as well as paracetamol at times. They said I appeared quite sensitive to pain, maybe I am. I was in another 4 days and then released and was by then using the morphine syrup but more Vicodin (sp).
That was all just the surgery part.
A week or so later I started the IMRT and Erbitux and my throat got progressively worse esp from about week 3 and I was on Vicodin and paracetamol and then I was admitted in week 3-4 to get the feeding tube in as I was losing too much weight. Got a free dose of Pneumonia during that procedure which called the need for antibiotics and Fluimicil to clear the mucus build up that started from both the pneumonia and the RT.
For the remainder of the 7 week IMRT I was on IV Morphine and then 2 weeks after completion, I was on Vicodin and paracetamol. I had Morphine syrup on hand but rarely used it as the side effect of it causing severe constipation made me reluctant to use it plus I think I became mildly addicted as I suffered what I think were 'withdrawal' symptoms when I they took me off it when i went home.
I had a pretty hard time the first 2 weeks after treatment as I have posted earlier. This is documented on these pages as being a fairly tough period for most both physically and emotionally as you generally don't see any improvement and the relief of completing your treatment is not rewarded with any noticeable improvement which is psychologically quite traumatic if you have expectations as I did. You now have prior warning of this common dilemma.
I am unsure of any sure alternative remedies for pain but you may find Homeopathics beneficial or possibly Acupuncture to relieve the pain as there will be pain involved unfortunately. How well you tolerate it is unknown to me. Perhaps I am very sensitive as mentioned earlier and so needed more medication so I hope you are stronger than I was.
I am sure some of the others who had the Tonsil Cancer will respond here with their experience regarding pain and medications used to further assist in your preparation. Most will also be from the US or Canada so the names I have used may be different as the 'brand' names change depending on where pharmaceuticals are distributed around the world.
All the best for this week.
Regds
Scambuster in Oz.0 -
Hi everyone,Kent Cass said:Monday
Ditto what Cindy and Hondo said, Chef. You have numerous issues, and history, so it is a lot. The treatment, itself, is not easy to get thru. Please let us know how the PS and CS go on Monday, and how you make-out with the other matters. Portland's big, so there should be the network in place to help you get thru this. I don't know where you are at in regards to faith, but I do hope you have that base covered, so to speak. If not, perhaps this is opportunity.
Believe you can successfully make it over this hurdle, and you will.
kcass
I'm sorry I
Hi everyone,
I'm sorry I didn't get back to you guys sooner to thank you for all of your wonderful support. It has been a rough couple days, for some reason I have started experiencing bolts of pain shooting throughout my body, especially where pressure points are located (several years in martial arts). The weirdest pain is coming from the left side of my head, the right side of my neck is where they removed my lymph node on the 16th of December.
I noticed yesterday that it's becoming hard to swallow and it's causing me cough more than I already do, which is a lot. I also noticed that I feel what appears to be a sore on the left side of my tongue. The paint in my joints and pressure points was almost unbearable last night. I tried writing to you guys but the pain was too intense to focus.
Since having my lymph node removed on the 16th, I feel like I have started going downhill and rapidly in the last 48 hours.
Did any of you experience this kind of discomfort before you had undergone surgery or started the radiation or chemo therapy?
Tonight I really wanted to respond back to all of you for sending me such great input and support, but I'm in too much pain and just trying to focus to write just this is too much.
I am very sorry. I will try to tell you what I learn tomorrow after the PET and CT scans if I am able. I truly appreciate all of you.
Thank you everyone
Chefdaddy0 -
ChefdaddyChefdaddy said:Hi everyone,
I'm sorry I
Hi everyone,
I'm sorry I didn't get back to you guys sooner to thank you for all of your wonderful support. It has been a rough couple days, for some reason I have started experiencing bolts of pain shooting throughout my body, especially where pressure points are located (several years in martial arts). The weirdest pain is coming from the left side of my head, the right side of my neck is where they removed my lymph node on the 16th of December.
I noticed yesterday that it's becoming hard to swallow and it's causing me cough more than I already do, which is a lot. I also noticed that I feel what appears to be a sore on the left side of my tongue. The paint in my joints and pressure points was almost unbearable last night. I tried writing to you guys but the pain was too intense to focus.
Since having my lymph node removed on the 16th, I feel like I have started going downhill and rapidly in the last 48 hours.
Did any of you experience this kind of discomfort before you had undergone surgery or started the radiation or chemo therapy?
Tonight I really wanted to respond back to all of you for sending me such great input and support, but I'm in too much pain and just trying to focus to write just this is too much.
I am very sorry. I will try to tell you what I learn tomorrow after the PET and CT scans if I am able. I truly appreciate all of you.
Thank you everyone
Chefdaddy
Yes I did have some pain in the neck before treatment but nothing I could not handle, now after treatment I still get pain in the neck and in the head, they call it side affects. If it gets too bad call your doctor right away don’t wait.
We will be waiting to hear for you my friend and praying for you at the same time. God bless and keep you through your trials0 -
Hi Hondo,Hondo said:Chefdaddy
Yes I did have some pain in the neck before treatment but nothing I could not handle, now after treatment I still get pain in the neck and in the head, they call it side affects. If it gets too bad call your doctor right away don’t wait.
We will be waiting to hear for you my friend and praying for you at the same time. God bless and keep you through your trials
Thank you for your
Hi Hondo,
Thank you for your kind words this morning.
Well today has been interesting. I went to have the PET and CT scan done and when I got there they did a blood sugar test because I'm diabetic and it was over 200 so they said they couldn't do the PET. I did have the CT scan done of my neck and chest. I told the doctor afterwards and he said they are going to proceed with the surgery as planned without the PET scan, that I would have to reschedule the PET later.
Do you think that there will be more surgeries since the doctor doesn't have a PET to determine the primary? I guess that's probably a stupid question.
I need to take care of my son so I will check in later.
Thank you
Chefdaddy0 -
No Stupid QuestionsChefdaddy said:Hi Hondo,
Thank you for your
Hi Hondo,
Thank you for your kind words this morning.
Well today has been interesting. I went to have the PET and CT scan done and when I got there they did a blood sugar test because I'm diabetic and it was over 200 so they said they couldn't do the PET. I did have the CT scan done of my neck and chest. I told the doctor afterwards and he said they are going to proceed with the surgery as planned without the PET scan, that I would have to reschedule the PET later.
Do you think that there will be more surgeries since the doctor doesn't have a PET to determine the primary? I guess that's probably a stupid question.
I need to take care of my son so I will check in later.
Thank you
Chefdaddy
When dealing with your Cancer there are no stupid questions, be up front with your doctors and if they give you an answer you don’t understand ask them again and tell them to explain in laymen terms. I am not sure how they can proceed with out the PET unless they are using the CT alone to determine the cancer size and location. The only problem with using just the CT it does not give them info on the rest of the body, only on a general location.
Also the problem with being diabetic is that when doing a PET the injection is 99.5% sugar water and only .05% radiation. The sugar water attaches its self to the Cancer and the radiation that is mixed with it shows up on the scan. That is one of the reasons why processed sugar is very bad for someone going through treatment.
Take care my friend and remember you may be new to CSN but you already have a lot of support here with us0 -
Hi Hondo,Hondo said:No Stupid Questions
When dealing with your Cancer there are no stupid questions, be up front with your doctors and if they give you an answer you don’t understand ask them again and tell them to explain in laymen terms. I am not sure how they can proceed with out the PET unless they are using the CT alone to determine the cancer size and location. The only problem with using just the CT it does not give them info on the rest of the body, only on a general location.
Also the problem with being diabetic is that when doing a PET the injection is 99.5% sugar water and only .05% radiation. The sugar water attaches its self to the Cancer and the radiation that is mixed with it shows up on the scan. That is one of the reasons why processed sugar is very bad for someone going through treatment.
Take care my friend and remember you may be new to CSN but you already have a lot of support here with us
I took a chance
Hi Hondo,
I took a chance yesterday afternoon after being turned away from having the PET due to having too high of blood sugar (237), I was able to rescheduled the PET scan for 7:00am today. I checked it 30 minutes ago and it had finally dropped to 167...yippie! It was really bothering me that they were going to proceed with the surgery without a clue as to where the primary might be.
I have to try to get a little sleep before I head over to the hospital. Thank you Hondo and everyone else for being here to help me through this and thank you for all your prayers.
Chefdaddy0 -
PrayersChefdaddy said:Hi Hondo,
I took a chance
Hi Hondo,
I took a chance yesterday afternoon after being turned away from having the PET due to having too high of blood sugar (237), I was able to rescheduled the PET scan for 7:00am today. I checked it 30 minutes ago and it had finally dropped to 167...yippie! It was really bothering me that they were going to proceed with the surgery without a clue as to where the primary might be.
I have to try to get a little sleep before I head over to the hospital. Thank you Hondo and everyone else for being here to help me through this and thank you for all your prayers.
Chefdaddy
My Prayers are with you
God bless0 -
same boatChefdaddy said:Hi Hondo,
I took a chance
Hi Hondo,
I took a chance yesterday afternoon after being turned away from having the PET due to having too high of blood sugar (237), I was able to rescheduled the PET scan for 7:00am today. I checked it 30 minutes ago and it had finally dropped to 167...yippie! It was really bothering me that they were going to proceed with the surgery without a clue as to where the primary might be.
I have to try to get a little sleep before I head over to the hospital. Thank you Hondo and everyone else for being here to help me through this and thank you for all your prayers.
Chefdaddy
Hi Chefdaddy. My PET was yesterday and I should hear soon what the results are. I am scheduled for a meeting with the head and neck surgeon on the 31st. My ENT Dr is pretty good at advocating for me. They "moved some patients around" so I could get in ASAP.
Hang in there and keep us apprised.
Warmly,
Mick0 -
Hi Mick,micktissue said:same boat
Hi Chefdaddy. My PET was yesterday and I should hear soon what the results are. I am scheduled for a meeting with the head and neck surgeon on the 31st. My ENT Dr is pretty good at advocating for me. They "moved some patients around" so I could get in ASAP.
Hang in there and keep us apprised.
Warmly,
Mick
My prayers are with
Hi Mick,
My prayers are with you!
I have a new dilemma in my boat!
I am supposed to arrive for surgery at 6:00am tomorrow morning but Portland was hit with a surprise snow storm this afternoon and the whole city is one big parking lot and I don't have a clue how to get up to the hospital. I'm beginning to feel that "Murphy" is a close relative lol.
The hospital is located on top of a very high hill (referred to as "Pill Hill") and they have a new cable tram that will take you from the newly constructed hospital buildings down at the waterfront at the city level up to the hill top hospital but it doesn't start running until 5:30am and I'm sure it will be packed with patients and medical staff. The roads up to the hospital are very windy and steep and pretty much impossible without 4WD.
The city buses were caught off guard and they have been colliding with guardrails and other cars. Two buses collided at the end of my street. I called the hospital and the switch board operator told me that the doctor's will most likely be there so I better be.
I had my PET this morning and I felt like a corn dog lol. An amazing machine, amazing technology.
I'll check in later, hopefully not as a snow cone!
Chefdaddy0
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