Hello everyone, glad I happened upon this site. I'm
newly diagnosed with squamous cell ca right side of neck, primary appears to be base of tongue. Have begun chemo treatments, Taxol and Carboplatin weekly x 6 weeks then radiation daily x 6 weeks then surgery. I am having my 3rd chemo tx tomorrow
Welcome, Joe.
That is the chemo mix I had after a bad reaction to Cisplatin, and I tolerated it very well, the only downside being loss of head hair, but not eyebrows or eyelashes. That is the Taxol at work. Do not worry, it will grow back.
Perhaps I am misunderstanding your post, but aren't you having the chemo and the rad concurrently?
Stick around and any questions you have about treatment or recovery will be answered by those who have been there before you.
And always remember that as intense as things are right now, this is just a small part of your life and it will soon be history.
Thanks Joanna, Currently my tx regimen is chemo only x 4 more weeks, but my oncologist said that next week if the mass is not showing significant reduction then he may consider combo therapy w chemo and radiation. I am a hospital pharmacist so I am very familiar with the meds but it is sure strange to be on the receiving side versus the compounding and dispensing side. Currently I am only experiencing the aching and fatigue for a couple of days after tx. I must admit I am dreading the rad.
Hi there Joe,
Best wishes to a fellow Arkansan - I also had SCC right side of neck with primary at base of tongue. My chemo regimen was basically the same as yours with the addition of 5-FU. I also had my neck dissection after radiation/chemo. I am doing very well 2 years post treatment with the exception of a few swallowing and dry mouth issues - but they are manageable. One day at a time during treatment and like Joanna says it will soon be history.
Where are you at in Arkansas if you don't mind me asking? I'm in Hot Springs Village and received treatment in Little Rock. There are several other Arkies on the forum as well - I'm sure you'll be hearing from them. Stay on the forum and ask questions as you need to - there is a wealth of good information here.
Pam
Welcometo the forum Joe.... look on the bright side.. in a very few months all this will be over and you will be invaluable to others coming after you.
Marica
Hi Pam,
I live in Forrest City, which is about 50 miles west of Memphis. I am getting my chemo tx at The West Clinic in Memphis, not sure yet where I will be getting my radiation tx. It sure is comforting to be able to converse with others about this, I have been handling all of this relatively well since my diagnosis of this on 07/27/06, but obviously the unknown expectations are rampant thoughts in my mind.
Joe,
I grew up in Jonesboro and that's not too far from Forrest City. Even now when we go to Memphis, we always stop in Forrest City for gas and/or bathroom breaks! My mom was a patient several years ago where you are being treated. Anytime those rampant thoughts get pesky just log on here for reassurance. There are lots of people ready to help. You can e-mail me at
[email protected] if you need to. I would love to help you if I can.
Pam
Pam,
Yes Jonesboro is just up the road about 60 miles or so. That is where I had my initial CT scan a few weeks ago, since then I have had biopsies and a PET scan in Memphis. Im curious why your 40 rads were 1/2 conv and 1/2 IMRT?
Also I am curious since your diagnosis sounds so much like mine, are you experiencing any speaking, swallowing or right side shoulder weakness as a result of your course of therapy?
Joe
Joe,
The tumor in my neck was very large so the radiation oncologist began with conventional XRT treatments. With the concurrent chemo my tumor responded quickly so after 4 weeks he moved me to the IMRT machine to try and spare some salivary glands and surrounding tissues. I have a partial dry mouth - I do produce some saliva but I also carry a water bottle everywhere I go. As far as swallowing goes, I do have some issues. My ENT insisted on a feeding tube and I am glad he did because I couldn't swallow anything from about 3 weeks into treatment until about 5-6 months post treatment. The tube was pulled out after 9 months. I have progressed with my eating the past year and a half starting with really soft foods and going from there. I still have to eat small bites and it takes me a long time to eat. This is due to scar tissue building up in my esophagus from the radiation. Try to swallow during radiation - I couldn't/didn't and I think that caused some of my difficulties. But even though I have eating issues it's manageable and I have gained 13 pounds in a year. I lost over 50 pounds even with the feeding tube.
As far as the right shoulder weakness goes - if you have a neck dissection I imagine the shoulder weakness is inevitable. I can lift my right arm over my head but it is noticeably weaker. I make myself use the right arm and I lift weights and exercise it to keep it moving -it's not that big a deal for me.
I don't have any speech difficulties other than my mouth dries out faster when I talk a lot. One thing to remember, even though our diagnosis sounds so much alike, the treatment plans and side effects are very individualized.
Hope I have helped you some - any other concerns, don't hesitate to ask.
Pam
Joe,
Everyone reacts differently, but I had six weeks of radiation and had NO problem. I have heard from other people who had treatments of radiation the same time I did and they said radiation was much easier than chemo. Take a positive attitude that radiation is going to be easy and it won't effect me. Joanne is so correct is stating that this is a small portion of your life and it will be over soon. I recently purchased a second home near Eureka Springs AK. All the people I have met from your state are very friendly and kind. o I'm sure you have a good support system, which is vital in your positive success.
Hacklene
Thank ya'll for the information and kind words. I am fixing to leave this morning for my 3rd chemo treatment in Memphis. Have a good day everyone!
Joe
Hi Joe,
I had the same diagnosis. You are lucky to be a pharmacist. You have good information. My wife works at the VA and had good imput form the Duke and VA doctors on my care. The radiation is tough, but we manage to get through it. Are you going to get a PEG tube? UIt will make things much easier. I also had chemo and radiation at the same time. They kicked the crap out of me for 8 weeks, but the cancer is gone. I'm now close to two years from diagnosis and doing well.
Good luck and keep us posted.
Steve
Steve,
Your news is great, congrats, makes me feel much better looking foward of things to come. I had my 3rd dose of chemo today, Taxol and Carboplatin. I do not know about the PEG tube yet, heck I could stand to drop 30-40 lbs. One of my best friends and golfing buddy is a general surgeon and I would imagine I could quickly get him to place a PEG when and if that time comes.
Hi Joe! Welcome to the forum. Your Dx and Tx sound much like mine. I am three years out and doing great. I had tons of chemo and then chemo with IMRT - lots of both. No surgery. Between the tumor and the radiation, I lost my ability to swallow much, so I live by my peg tube.
Many here believe pegs to be a cruch and unneeded. I disagree. I believe that your general nutrition DURING treatment - particularly the calories you get and the water you consume - have a HUGE impact on how well you heal, how quickly you heal and whether or not you heal. Give that peg tube some serious consideration - not just to save you from swallowing, but to assure that you can consume sufficient calories and water to promote your recovery.
And don't wait till you NEED a peg (throat in ruins), because pegs can be hard to place through such throats. Allow me to state the obvious: our cancer is NOT a weight loss opportunity. You will need 2500 to 3500 calories per day to survive the treatment and recover.
Not eating does NOT force your body to burn fat - it usually causes the slow destruction of muscle. Too few calories means you experience more pain, more tx symptoms, more depression, more infections, more stiffness, more lethargy, etc. Push calories way UP during tx. Triple the amount of water you drink - it cuts the symptoms in half - all of them. Lose weight later. Be strong, Tom
Could someone give me some kind of idea of what I am looking at realistically as far as recovery after my chemo, radiation, surgery, till I can anticipate some kind of normal activity. I was up til 4 AM this morning reading all the FAQ's and my mind is just buzzing with questions to ask my oncologist next week when I meet with him after my 4th chemo treatment.
Joe
Hi Joe, sorry that you've joined us but there is great information and support here.
Tom is absolutely correct that you don't want to wait until you need a PEG tube because others have found they were not able to get that done due to the condition of their throat. They waited too long.
Jack had his PEG tube removed yesterday after 7 months and I really believe it was a life saver during the treatments. Think of it as another weapon in fighting cancer. Many of us have found that maintaining adequate hydration/nutrition actually speeded up recovery time and decreased the amount and severity of side effects.
As a fellow health care professional I can tell you that the view from this side is entirely different and you will have unexpected experiences.
When Jack was diagnosed I went into organization mode. I figured if I just created enough procedures his course of treatment would be better. Guess what - I couldn't control everything. Cancer doesn't care what we do for a living or think we know. It has a mind of its own. Not all side effects are preventable but the ones related to keep up your nutrition/hydration are the exception.
I hope that your treatments continue to go well and that your side effects are minimal. In the meantime, take out some insurance and get a PEG tube.
Regards JoAnne
Joerx - I noticed you haven't posted in a while -how are you doing with your treatments? Just wanted you to know a fellow Arkie is thinking about you. Let us know how you're doing when you can.
Pam
Pam,
My response my appear jumbled up, but it is early in the morning and my vision is pretty messed up right now.
Sorry I have not been on in awhile. I have currently received 5 doses of taxol and carbo. I have been handling that very well with the exception of peripheral neuropathy from the taxol. I am having blurry vision, numb toes and fingers, etc and am taking Lyrica for that. I have had the radiation therapy simulation and the go date on that is probably going to be the 28th of this month. The delay is due to the removal of a wisdom tooth yesterday. With that being the case my medical oncologist is wanting me to come back in this coming Monday for another full dose of chemo.
My wife was sorta getting on to me for visiting OCF page so much as early on I was getting pretty upset from all I was reading, but I told her that I have learned so much from everyone and everything on this site. As a matter of fact I have a link to this site from my caring bridge site.
My boss turned me onto a website one of her friends was using during his bone marrow transplant and I have been keeping in touch with family and friends through it. It is called Caring Bridge and my link to it is the following
http://www.caringbridge.org/visit/joemasters I appreciate you checking in on me, as I still have quite a road ahead of me, I am just fortunate things have gone well so far.
My wife and I hope to get down to Hot Springs soon, as I have a timeshare in Maui that I have deposited my week and can now trade it for a week anywhere else.
Joe
Joe,
Thanks for replying to my inquiry - good to hear from you. It sounds like you have a good attitude going into treatment and that will help a lot. I didn't find this site during my treatment, in fact it was about a year after. I wish I had known this site was here - it would have been nice to exchange info with people who were going through what I was at the time. I visited your site at Caring Bridge and enjoyed getting to know you through it. Hope you and your wife get to visit Hot Springs soon - you're gonna need more water! There are lots of timeshares here in Hot Springs Village along with 8 golf courses and 7 lakes (not to mention our close proximity to Lake Ouachita) Definitely a nice place to live and visit.
Good luck with your treatments - eat your favorite foods between now and then. Those 6 weeks of daily radiation treatments will go by faster than you think.
Take care,
Pam