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Diagnosed last Monday (Squamous Cell -throat cancer)

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi,

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

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

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
Scambuster

ctfitztx
Posts: 1
Joined: Dec 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

Chefdaddy

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

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.

smfitztx2010
Posts: 4
Joined: Jan 2010

I am so sorry to hear that you had to have your teeth pulled, especially after 6 years. I consulted two dental specialist, one oncology dentist and one periodontal specialist before making my decision to fight to keep my teeth. Both told me that I had a great set of teeth and better than they normally see in my fellow veterans and that they would recommend that I do everything I could to keep my teeth. They did talk about the possibility on jaw bone necrosis should my teeth become decayed.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Hi and welcome to CSN, I too made the decision to keep my teeth but now I wonder if that was the right decision. My mouth can’t open more then ½ inch so no dentist will or can work on me. I have to do my best to keep the teeth clean; I don’t use fluoride as I have read so many bad things about it. I have one tooth that is falling apart in my mouth, I told my doctor about it and he said they will need to do 20 hyperbaric treatments before letting anyone do any thing like trying to pull a tooth. All the rest of the teeth are ok for now. But I wonder if I pull one now should I not just pull them all and get it over with.

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

If you are a suitable candidate - try to get the Erbitux included in your treatment. The clinical trials results were amazing and it has been touted as one of the new Cancer Drugs of 2009. It is used as an additional drug to chemo and radiation - it attacks the cancer at the site by attaching to receptors - pretty cool space age stuff.

I have to admit I am envious - my dad has esophageal cancer --- and it is still in clinical trials for that cancer although it has been approved for use for throat cancer - you are lucky. I don't know the statistics but for esophageal cancer it took 1 year survival rates from 30 to 75%, I'll take those odds all day long:) Check it out and Good luck.

Best,
Cindy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

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:)

Cindy

picadilly217
Posts: 3
Joined: Jan 2010

I was diagnosed with stage 4 cancer in the throat and it had already spread to lymph nodes on both sides of my neck..Have had the big surgery and was able to keep my voice and now waiting for the end of Jan to start the radiation process. I have already survived lung cancer (1985) and now at 59 I am in the fight again. I noticed you had some questions about radiation and other details.....Talk to your ENT!!!!! he should map it all out for you, so there are no surprises. Even though everyone feels things differently we all have the same fears and I know I need the input of others going through this so if I can help you in any way....feel free to call upon me.

debbiejeanne's picture
debbiejeanne
Posts: 2223
Joined: Jan 2010

Pic, I'm sorry to hear your new but please know you have friends here. We are either going thru it or have completed our treatments and are now in the recovery stage. You will be in our prayers. Hang it there and never give up!
God bless you,
Debbie

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

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.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

My Prayers are with you

God bless

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you Hondo for your great support.

Chefdaddy

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

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

Chefdaddy
Posts: 164
Joined: Dec 2009

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!

Chefdaddy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

You have these from me, Chef. Big day. Believe He is with you, truly believe, and He will be. Trust me on this.

Believe.

kcass

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you Kent.

Three years ago this last week, my son, who was 11 at that time, was diagnosed with leukemia, a year ago my son was given two months to live after one of the chemo treatments gave him cirrhosis of the liver, a few months later I learned my kids were being severely abused by my ex's boyfriend. My son is now in remission, his daily chemo regimen ends April, his liver has turned itself around, astonishing his doctors and I successfully confronted 5 of my ex's past attorneys and 4 judges and I now have sole custody of both kids and I am horrible in the court room arena ....Yup! we are definitely believers!

My difficulty is remembering the light when it gets very dark, but I'm working on that.

Thank you for your prayers Kent, please keep them coming.

Chefdaddy

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Big Brother Kent and Little Brother Hondo keeping you in Prayer all the way around, I love Hebrew 11.1 Now faith is the substance of things hoped for, the evidence of things not seen. Your front and back Doors are covered.

God protect and keep you and your Children in Faith.

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you both my brothers.

I want you both to realize how important the fellowship and support is that you have so freely offered to a total stranger. When I had my lymph node removed it was 8 1/2 months after the ENT doctors first told me that there was something wrong with the solid mass that it had become and that it needed to be removed asap. Due to the timing of the onset of court hearings to prove "immediate danger" to the court and several delays and reschedules that followed, I ended up having to cancel the surgery four times. Then three weeks ago I ended up in the ER in debilitating pain in the lymph node area and was told it had to come out and that I had possibly waited too long. On Dec. 16th they removed it and then a week later I was told that I had Squamous Cell cancer with an unknown primary. I was overrun with fear, fear for my children's future and their safety, for if something happened to me they could possibly be forced to go back. That's when I accidentally found this site and met you. You, with your kind words and never ending support while at the same time reflecting the love of our Lord. That is what pulled me out of deep depression and the fear that was numbing me. I don't know what the outcome is going to be after the surgery in the next few hours, but before I leave I just wanted you all to know that you were successful in reminding me "Who's" in charge and that it's not me, nor the fear that was consuming me, but you made me remember that it's the God who carried me through pancreatic cancer in 2001, that has turned a boy's prognosis of only two months to live to now having a miraculously healing liver and who's leukemia is now in remission. That it was God that gave me the words and strength to fight against several highly trained attorney's for my children and to win custody. I just wanted you to know what you actually did for me before I leave for surgery, that what you do here and the manner in which you do what you do here is a wonderful blessing my friends.

May the Lord richly bless you all

Chefdaddy Mike

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

I am sitting here in tears. Tears of joy for Chefdaddy. Please may the Lord help him. And for him to always remember that light....at the end of the tunnel. It will be difficult. I KNOW you will pull this through Chefdaddy! With all of the wonderful miracles you've had so far....things will turn out for you and your family. And it will take time. Time is OK. I too have and will pray for you Chefdaddy:)

Cindy

Chefdaddy
Posts: 164
Joined: Dec 2009

To all my friends,

I was released tonight from the hospital. The surgeon removed both tonsils and didn't take any of my tongue.... Yippee! The first two days there was very little pain from the tonsils being removed or the feeding tube they implanted, but yesterday I was transported to the radiation department in a wheelchair and while waiting for the consult with the doctor the pain raised it's ugly head. An incredible amount of pain from the tonsil area and the PEG caused me to pass out. The nurses were called from my floor (10th) and they arrived and administered morphine. I was able to complete the consult but I was still in a lot of pain, especially in the PET. The muscle wall that had been penetrated for the PEG started spasming and eventually turned into an full blown abdominal Charlie Horse. Once I was returned to my floor they started doping me up to get control on the pain. Valium finally stopped the cramping. They decided to keep me another night to be safe.

The good news! My PET scan did not show any hot spots, the final report will be in tomorrow, but so far it appears the cancer was contained to my throat area. I was told that I will have 7 weeks of radiation, 5 times per week and they are still deciding whether or not to give me chemo therapy. I told them I would rather that they would give me chemo and not take any chances. Do you think that was inappropriate telling them that?
They did inform me that they are going to have my teeth removed before they begin the radiation. Unfortunately, I will not have any dentures for at least 6 months. I'm afraid I will look like Roy Rogers sidekick. I did put a request in early on (as suggested by you) for Magic Gargle, I came home with a bottle.

Thank you everybody for your compassion and the priceless information you give.

Your friend

Chefdaddy Mike

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

ChefDaddy,

I've been reading your thread, and am hoping for the best for you and your children.

Have to ask - was your cramping at the PEG site only? Since my 12-24 PEG placement, I've been having some (sometimes hard} cramping (not as bad as yours) several inches away from the incision site, and haven't been able to get a possible explanation.

Good to read about the PET results. Keep up the good news.

Pam

Chefdaddy
Posts: 164
Joined: Dec 2009

Dear Pam,

The on slot of pain that hit me hard was in the stomach accompanied with lots of transitory pain all around it. The pain above the PEG site was bad enough that they ran an EKG in case it was my heart. It's hard to describe but just now while getting up from my recliner to come to the computer and as my daughter was helping me out of the chair it felt like the interior part of the PEG got out of place or caught on something. If I remain still it's okay until the spasms kick in, but I think the Valium will help stop that.

Thank you for your kind words for me and my children.

God bless you all

Chefdaddy Mike

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

HI Mike,

I recall now when my PEG was freshly in I had severe pain around the PEG on a couple of occasions which felt like it had pulled out or been dislodged. It turns out it was trapped gas so I had to aspirate the PEG. that was just getting the large empty Syringe they should have given you, and plugging it in to your PEG and opening the valve. Alternatively, you can stand next to your bathroom basin and just open the open the valve over the basin and see if there is any gas or pressurized liquid causing the pain. If gas and some liquid comes out, that may be the cause of your pain.

This may or may not be the cause of the pain but worth a try as it won't do you any harm to aspirate.

I also used the PEG to take most of my meds. I had to crush up the Vicodin and other pills and mix with warm water and inject through the PEG with the same big syringe. That reduces the need to take big pills orally which may be an issue if you do start Radiotherapy.

I also used Panadol (Paracetamol) for the post surgery pain with some success but be SURE NOT to exceed the recommended dose as it can shut down your Liver and cause grave consequences.

Sending light your way.
Scambuster

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Pam,

Today when I was talking to my oncology doctor for the first time and I mentioned that I was on Valium to help control the muscle spasms around the PEG. He took a hold of the tube and in a couple seconds the pain was gone. Apparently the outside part of the PEG that is against the skin also has a similar piece on the inside of the muscle wall and the surgeon that puts the PEG in determines how tight it clamps the muscle wall. A lot of surgeons think that it needs to be clamped tight. My oncology doctor said he had one patient that couldn't stand upright because it was so tightly clamped. My oncology doctor squeezed the tube mechanism and it immediately gave more slack between the two clamps. The pain stopped immediately.

I hope this helps!

May God richly bless you and yours

Chefdaddy

smfitztx2010
Posts: 4
Joined: Jan 2010

I started getting cramps about a week after my PEG was installed that would reoccur every few days. Never did figure out what was causing the cramping that almost felt like my stomach was turning over. Maybe it was just an adjustment period because the cramps when away on their own. I have had my PEG tube now for about 2 months.

Dazey
Posts: 86
Joined: Sep 2009

Good news about the PET scan - hope your peg site stops being a problem for you quickly. I also had no uptake on the PET scan prior to treatment. Between that, the CAT scan and multiple biopsies in the mouth, the treatment recommended by Sloan Kettering was IMRT radiation only. I was not able to commute to NYC or WEstchester every day so they found a radiation center closer to my home that did (does) IMRT and arranged treatment there. I completed 6 weeks of treatment and the CAT scan the following month shows normal. I was told the radiation would get anything in my neck, so no surgery (aside from the removal of the one lymph node) and no chemo would be necessary. I did not have a PEG tube .....I managed to get nutrition....lost 30 pounds...but was able to eat foods with nutritional drinks (Boost)...still have some side effects, but know they should lessen with time.

I know how difficult it is to try to wrap your brain around what is happening and what the choices are.....and not to forget the other parts of your life .....your children....You can and will get through this. You have so many supporters on this site and we are all your cheerleaders and all have great information to share. May the angels surround you with their wings and help you through this difficult time. Dazey

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you Dazey for your support and compassion.

The biggest problem that I am experiencing at this time is the pain medications. I'm allergic to most of them and if I do take them I can only take a fractional amount of the normal dosage. After both surgeries, removing the lymph node and the tonsils, they had a very difficult time stableizing me in recovery. The pain meds bring on the same symptoms as Vertigo and also messes with the beat rate of my heart. I took a 1/4 dose of liquid Vicodin a little while ago and my clothes are now saturated with sweat. I'm very concerned what I can do after the radiation begins to control the pain.

You are absolutely right about trying to take in all of this and try to be dad at the same time. It's sometimes overwhelming but that's what prayer is all about!

My prayers are with you and your recovery as well.

Chefdaddy Mike

Chefdaddy
Posts: 164
Joined: Dec 2009

Dearest Cindy,

Thank you so very much for your prayers.

I was going to write to you earlier but I had to lie down due to all the discomfort.

I left the hospital without any pain meds and the pharmacies closed for the holiday.

I'm looking forward to Saturday when they reopen.

I'm afraid I have to end this quickly as I'm having spasms around the PET and need to lie

down again.

I thank God for your being here.

Chefdaddy Mike

klittle
Posts: 4
Joined: Jan 2010

Chefdaddy I've experienced the same cramping in the muscles around my PEG as well. I vented it, never was convinced it helped, but I tried it. I've also dropped 40lbs since I started treatment for stage 4 tonsil and throat, which may have affected the way it fits as well. Sorry to hear they're going to pull your teeth. I'm trying to save mine, but hope for that is fading as brushing and flossing cause the sores from radiation to bleed and the fluoride trays the dentist made for me make me gag, which as you know isn't pleasant either. All I can say is hang in there. It's been my strategy, and eventually light has to show up at the end of the tunnel.

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

An excellent and inspiring post, Chefdaddy Mike.
“I sought the LORD, and he heard me, and delivered me from all my fears” (Psalm 34:4).
You'll make it through this.

--Jim in Delaware

debbiejeanne's picture
debbiejeanne
Posts: 2223
Joined: Jan 2010

Chef, how are you and your family doing? Last I heard you were dealing with illness and court. I hope your plate has empited out some and you are freer to take care of the illness parts. I pray you and your family are doing well and that God is taking good care of each of you! Please give us an update.
God Bless You,
Debbie

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I have been waiting to hear how you were doing and I am glad to hear that the cancer was all in just one area. I agree to get the teeth pulled out before the treatment as all it does is gives you problems down the line or for me that is how it is. Keep strong my friend as many of us here are praying you through the part of your life. The call on taking Chemo is up to you; listen to what the doctors tell you then ask as many questions as possible till you are satisfied with the answers. Just remember we will all be here to help you through the radiation and chemo with our prayers and support.

May the God of our fathers continue to bless you and your children

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Hondo,

The final results of the PET scan are still not in as far as the possibility of cancer in some of the other parts of the throat and head. They said that if it turns out that there is they will not do more surgery but radiate the area more.
What do you think Hondo as far as whether or not to push for chemotherapy as well?

I get a bit confused when it seems like the doctors are getting ready to flip a coin as far as doing chemo.

Your friend
Chefdaddy Mike

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I truly wish I knew the correct answer, I sometimes wonder if I would have done the Radiation and Chemo the first time if I would have been spared have to do it the second time. But then I realize that it does not matter because my friend Jesus was there holding my hand all the way through.

I will tell you this, make it a matter of daily prayer asking God to lead you to the right discussion, and then sit all your doctors down in one place if possible and ask them, what the odds are if you take chemo and if you don’t take chemo. Believe that God will lead you in the right choice and clam the promise in Hebrews 11.1: Now faith is the substance of things hoped for, the evidence of things not seen.

I know that my friend Jesus will be there for you too just reach out to him in faith. What ever discussion you make will be the right one.

God bless and remember we are praying for you.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Very well spoken, Hondo. And so very true.

Chef- have they spoken to you of liquid morphine? I was on it in weeks 2 and 3, and 5 and 6. Never had the liquid vicodin- but was on the pill form when not using the morph. Had to cut the pills up to swallow, as they are large, but it went-down okay. Might be early for you to be on the morph, but if it is needed to get your thru it- so be it. I do urge caution on it's use: scary stuff, that'll likely render you incapable of driving, etc., and you will notice digestive changes. Still, it does help bigtime with the pain/bad times.

As for getting chemo and rad, together- that's what was done to/for me. My Oto told me that radiation, alone, was the old way, and fault is known with that. Told me testing was done with both c&r, and they stopped the testing in short order, because the results of getting both at the same time was so much better, that it was a medical no-brainer. U of Iowa swears by it. Know a man with head and neck that several years ago was only treated with rads, and a year and 1/2-ago had to go thru a 14-hour Op., with major consequences that are still with him- and the U of Iowa Drs. told his wife it probably could have been prevented if his initial treatment was with both c & r. Your C may be different than his, or mine.

In my prayers, Chef- you, and your kids. Believe.

kcass

Chefdaddy
Posts: 164
Joined: Dec 2009

Hello my friends,

The last time I was here was the 2nd after having my tonsils removed on the 30th. Around 5:00pm I started bleeding profusely from the surgery area and my brother called for an ambulance. I lost a lot of blood by the time I reached the hospital. The bleeding slowed down a little and the ENT doctors were called in and they tried using Silver Nitrate but 30 minutes later everything exploded and I was in serious trouble. They could not stop the bleeding. I lost almost two quarts. They ran me into the Operating Room but they couldn't get any of the "ON Call" anesthetist's to answer their phone calls or pages. They said they wanted to give me blood due to the significant amount that I had lost but I was told later that there was a high risk of my blood disorder having a problem with other blood and possibly causing an infection. So I have been extremely fatigued and exhausted for the last two days and very sore as they cauterized the entire area where they had removed the tonsils the first time. I swear I need to throw out all of my shirts that have the bullseye on the back! This is getting ridiculous. The other problem the hospital has been working on with little or no sucess is trying to control my blood sugar. They have controlled my small diet and still the sugar levels are very high. They have switched me over to Lantus with additional shots each meal and it's still in the high 200's. They keep telling me that I am going to have real problems if they don't get it under control by the time the radiation starts. Kent and Hondo, thank you for your input on the issue of having radiation and chemo together. I think there is too much of a risk to not have both. I'm still really weak and kind of mushy brained from the blood loss so please excuse any typo's and backwards sentences.

Your friend

Chefdaddy Mike

Dazey
Posts: 86
Joined: Sep 2009

you can't catch a break, can you....so sorry that you are going through all of this! You are definitely in my prayers. You can and will get through this; keep your head where your feet are and know that you are not alone. Dazey

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you Dazey,

It's becoming overwhelming. God says he won't give you more than you can handle but I'm so weak and in constant pain that I'm past that point and I have yet to have all my teeth pulled and begin radiation.

I don't think I should communicate here anymore as it may do harm to someone new.

Thank you for all of your prayers

I love you all

Mike

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