Got firm diagnosis, has anyone had similar diagnosis?

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Comments

  • illoozions
    illoozions Member Posts: 32
    Skiffin16 said:

    Center for Cancer Care & Research ~ Lakeland Florida
    Lynette....we need to get together.

    I live in Lakeland and that is where I had/have all of my treatments. I have Dr. Jean as my ENT, Dr. Mulaparthi for the Chemo, and Dr. Barrett was for the Radiology Plan.... The nurses and doctors are awesome at the Center. I have a few very special nurses that are totally excellent in my opinion.

    John

    Love Dr Jean :-)
    Hi John,

    Roger also had Dr Jean and we adore him. He has Dr Fred Schreiber as his chemo onc and Dr Sandra Sha as his rad onc. They have all been wonderful so far, Dr Schreiber reminds me of a big teddy bear :-). My e-mail is illoozions@aol.com write me and I will give you our address, We live on the southside off 540A.

    Lynette
  • illoozions
    illoozions Member Posts: 32
    Skiffin16 said:

    PEG
    Hi Lynette,

    I was generously nourished also and the feeding tube was mentioned in my initial treatment plan. But only as a resort to not being able to take in any calories. That option was always out there and on the table.

    But unlike many here, I didn't have a PEG inserted as the medical professionals on my team didn't feel it was necessary. I lost maybe a total of 40 or 45# during the entire process.

    I'm 6' and started at 275# so I went down to about 235#. At the worse there was a period of about 4 weeks into the concurrent chemo/radiation and lasting until 3 - 4 weeks posts rads that I didn't take much in. I mainly survived off of Ensure Plus, water and a few soft foods like the DelMonte jarred peaches, cream of wheat, mac-n-cheese.

    My doctors were continually monitoring me and my weight and at no time did they feel that I was in jeaporady of losing too much weight, LOL....so for once it was a good thing to be a little heavy.

    The Ensure Plus has a bout 350 calories per can if I remember correctly. So I mainly used those several times a day as my main source of calorie intake. I liked the Strawberry (they come in several flavors), but I could barely taste anything at the time anyways. I mean during that time even water tasted like sweat, kinda salty saline taste.

    Anyways, I'm almost a year out, everything is looking good, and I have back around 80% or so of my taste and have regained nearly the same for saliva, other than night which is a bit dry still....

    John

    One heck of a weight loss plan
    Well this is certainly not the weight loss diet that Roger wanted, but thankfully he also has a fair amount he can spare. He is also 6.1 and about 245 lbs, so he is truly hoping to avoid the PEG. I read him your's as well as all the other responses here and it has given him much needed encouragement after todays fiasco. I will be hitting the phones again tomorrow, trying to locate an Oral surgeon with a heart and not just pockets to fill with cash.

    Lyn
  • illoozions
    illoozions Member Posts: 32
    Kimba1505 said:

    Anxiety Normal
    Hi Lynette,
    I am relatively new here, in that my partner, Mark, was diagnosed with SCC of the left tonsil on April 13th. On May 3rd he had the first of 3 surgeries. On Wednesday he will be 2 weeks post radical neck dissection where they took all his lymph nodes on the left side of his neck. His surgery to remove the tonsil was robotic. We are in the Philadelphia area and there is a Head and Neck surgeon here who does these surgeries with a robot so angles and cuts can be achieved that the human hands cannot do.
    Today he is being fitted with his mask for radiation, sees the dentist tomorrow and medical oncolgist on Thursday all in prep for chemo/rad. (also at the same time - pretty standard)
    I find things can't happen soon enough and then things happen quickly and then there is where time is standing still. Anxiety is such a normal state, that the things that I think best combats it are a positive outlook, which you can get from folks on these boards, being actively involved with appointments, care, and information gathering, and loving support around both of you. Stay healthy. I have been a little under the weather the past days and it affects everything. Take care of yourself!!!
    Best of luck to both of you...you are not alone,
    Kim

    Anxiety Normal
    Hello Kim,

    I see that a lot of the people on here have had surgery, Our Drs didn't consider surgery for him. I am not sure why not. I do know that the tumor on the tongue was too large at 3.4 cm to remove, without loosing the tongue! I am not sure why they didn't consider surgery for the several lymph nodes that it has invaded, but maybe they are hoping that the chemo and rad will eliminate the danger of leaving them in.

    You are certainly right about this web site, It has made me feel sane and given me a strength that I don't think I would have had without all my new found friends :-)
    I wish you and Mark a speedy road to recovery.
    Lynette
  • illoozions
    illoozions Member Posts: 32
    ratface said:

    Totally deplorable and unacceaptable
    Lynette right now isn't the time to get litigious but you should certainly contemplate it after you get to a stable point in the treatment. What happened 3 1/2 years ago shouldn't happen. They were clearly wrong and you have documentation. I am not an advocate of sueing doctors but my God they were wrong and risked his life without hesitation. This cancer although survivable results in fewer than 30% of us returning to work because there are complications and issues years after treatment. Right now you have your priorities but it's burning me up that they did that. Don't let them get away with it less they do it to another unsuspecting poor **** among us. I get copies of everything and almost always get little resistance.

    Deplorable and unacceptable, YES
    Hi Ratface, (How did you come up with a name like that ) :-)

    You are right that something needs to be done and yes, I have the documentation to produce and pursue when we get on a more even keel here. What is even worse, is that he mentions it in an October 2006 report and then in a November 2006 follow up report, he states that he did an oral cavity inspection and everything "including the tonge was normal! I think he must have been taking drugs he was supposed to prescribe for someone else !!!

    We went back to our previous County and spent the day collecting Roger's records from the ENT, Primary care, Heart, hospital and lab, so there is no way that he had time to misplace or otherwise alter any documents. I am sure that he is unaware that we have all the pieces to the puzzle.

    I am not one to sue either, but him and the primary Dr put my husbands life in danger and that warrants the wrath of an angry wife!!!
  • illoozions
    illoozions Member Posts: 32
    Hondo said:

    Hi Lynette
    I have a diffrent type cancer NPC but I do want to say Hi and welcome you here to CSN.

    All the best to you.

    Hi Hondo
    Thank you for the kind words and the welcome. This website and all of you will likely be my lifeline at times, so I am very happy that I found it.

    Here's to the dream of a cancer free world in our lifetime :-)
    Lynette
  • illoozions
    illoozions Member Posts: 32
    Pumakitty said:

    Hi
    Hi,

    This sounds like the diagnosis my dad got in March. He is almost half way through is treatment and doing great He is eating better now then he did before because of the pain in his tongue (that pain is gone and he now has side effects from rads). He is also drinking the ensure and the boost for extra nutrtion. It tool about 2 months for him to get started. I wish you both all the best and please read all you can on this site it has been a blessing for our family.

    Hi Pumakitty
    I am going to stock up on "Boost and "ensure" when I see it on sale. It is unbelievable that they cost so much. I will say a prayer for your dad, as well as all the others that frequent this website. Thank you for writng and for your kind thoughts,
    Lynette
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Love Dr Jean :-)
    Hi John,

    Roger also had Dr Jean and we adore him. He has Dr Fred Schreiber as his chemo onc and Dr Sandra Sha as his rad onc. They have all been wonderful so far, Dr Schreiber reminds me of a big teddy bear :-). My e-mail is illoozions@aol.com write me and I will give you our address, We live on the southside off 540A.

    Lynette

    Dr. Jean
    I actually go in for my routine 6 - 8 week exam with Dr. Jean Wednesday. Not sure if you have started any treatments as of yet, but the nurses are awesome, Lane and Jerry are great.

    I live on the Southside as well, DeerBrook to be more precise..

    Publix has their brand of Ensure & Ensure Plus that has all of the same calorie, mineral and vitamin values as the brand name and it's a few dollars less expensive.

    I know it seems somewhat pricey, but the way I looked at it, was I wasn't spending any additional money on real food, so in those terms it wasn't really that bad.

    I mean even if you drank a six pack a day, that's only 6 - 8 dollars.

    I'll shoot you an email tomorrow.

    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Anxiety Normal
    Hello Kim,

    I see that a lot of the people on here have had surgery, Our Drs didn't consider surgery for him. I am not sure why not. I do know that the tumor on the tongue was too large at 3.4 cm to remove, without loosing the tongue! I am not sure why they didn't consider surgery for the several lymph nodes that it has invaded, but maybe they are hoping that the chemo and rad will eliminate the danger of leaving them in.

    You are certainly right about this web site, It has made me feel sane and given me a strength that I don't think I would have had without all my new found friends :-)
    I wish you and Mark a speedy road to recovery.
    Lynette

    Surgery
    Lynette,

    On mine Dr. Jean removed my tonsils, but they decided to wait and see the effects of the chemo and concurrent chemo/radiation on the tumor that I had in addition to the tonsils.

    In my case it was a good call, by the third full round of chemo, the tumor had dissolved. All of the scans have been clean to date, so at this point I'm in a maintenance mode and no additional surgery is planned.

    John
  • illoozions
    illoozions Member Posts: 32
    Skiffin16 said:

    Dr. Jean
    I actually go in for my routine 6 - 8 week exam with Dr. Jean Wednesday. Not sure if you have started any treatments as of yet, but the nurses are awesome, Lane and Jerry are great.

    I live on the Southside as well, DeerBrook to be more precise..

    Publix has their brand of Ensure & Ensure Plus that has all of the same calorie, mineral and vitamin values as the brand name and it's a few dollars less expensive.

    I know it seems somewhat pricey, but the way I looked at it, was I wasn't spending any additional money on real food, so in those terms it wasn't really that bad.

    I mean even if you drank a six pack a day, that's only 6 - 8 dollars.

    I'll shoot you an email tomorrow.

    John

    Ensure and Boost
    Aha, you got me on that one. We actually may be spending less, my mind hasn't quite wrapped around all of this yet and I hadn't thought it through. We live in Sunset Vista, 1/2 mile from US 98 s. I know where Deerbrooke is, so your not too far. My husband said we should meet you. WE moved from Spring Hill, fl where he had many friends his age and retired, to here where most are younger and working, so he has been very lonely here. It would be good for him to have someone to chatter with :-)

    Lynette
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Ensure and Boost
    Aha, you got me on that one. We actually may be spending less, my mind hasn't quite wrapped around all of this yet and I hadn't thought it through. We live in Sunset Vista, 1/2 mile from US 98 s. I know where Deerbrooke is, so your not too far. My husband said we should meet you. WE moved from Spring Hill, fl where he had many friends his age and retired, to here where most are younger and working, so he has been very lonely here. It would be good for him to have someone to chatter with :-)

    Lynette

    Sounds Like A Plan
    Lynette,

    I am 56 and still working (Lakeland Electric - City of Lakeland), I've been there 20+ years.

    Hondo (and his wife) and I met last year when he was here (Tampa) for work related business. Really nice visit and we had a great meal together over in Tampa (Shells Restaurant on Dale Mabry), I'm sure you have probably heard of Shells.

    Anyways, I better get to bed, 6AM comes pretty early. I seem to dose off about 9ish and wake up for a few hours around mid-night...part of the gift that keeps on giving I guess.

    Talk to you tomorrow.
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Hi Pumakitty
    I am going to stock up on "Boost and "ensure" when I see it on sale. It is unbelievable that they cost so much. I will say a prayer for your dad, as well as all the others that frequent this website. Thank you for writng and for your kind thoughts,
    Lynette

    Ensure
    Sometimes you can also find $2.00 OFF coupons, but usually the Publix brand was still always less expensive.

    I preferred the Strawberry, it had a hint of taste for me, but it was mainly just for calorie intake anyways. I liked the DelMonte Jarred Peaches at Publix also, not sure why but I ate a lot of those, and canned spinach, LOL....

    JG
  • illoozions
    illoozions Member Posts: 32
    Skiffin16 said:

    Ensure
    Sometimes you can also find $2.00 OFF coupons, but usually the Publix brand was still always less expensive.

    I preferred the Strawberry, it had a hint of taste for me, but it was mainly just for calorie intake anyways. I liked the DelMonte Jarred Peaches at Publix also, not sure why but I ate a lot of those, and canned spinach, LOL....

    JG

    Peaches n spinach in the same sentence, YUK :-)
    Good morning,

    Roger loves peaches and does eat spinach from time to time. He will be having all of his teeth out tomorrow, and is worried that he won't be able to eat anything. I told him that his tongue can pulverize a lot of those kind of foods, and he will be surprised at what he will be able to mangle into a liquid type food, when he wants to eat it bad enough. I can understand the strawberry being the strongest of the flavors as it has the tartness that vanilla and chocolate don't.

    Lyn
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Peaches n spinach in the same sentence, YUK :-)
    Good morning,

    Roger loves peaches and does eat spinach from time to time. He will be having all of his teeth out tomorrow, and is worried that he won't be able to eat anything. I told him that his tongue can pulverize a lot of those kind of foods, and he will be surprised at what he will be able to mangle into a liquid type food, when he wants to eat it bad enough. I can understand the strawberry being the strongest of the flavors as it has the tartness that vanilla and chocolate don't.

    Lyn

    Tastes
    The tastes aren't that strong during some periods, or actually pretty non-exsistant....

    But I could taste (a little) both of those pretty much completely through treatment when even water tasted like sweat....

    He's an "Old Salt", he's been around for a while and I'm sure can handle all of this upcoming therapy....

    JG
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    One heck of a weight loss plan
    Well this is certainly not the weight loss diet that Roger wanted, but thankfully he also has a fair amount he can spare. He is also 6.1 and about 245 lbs, so he is truly hoping to avoid the PEG. I read him your's as well as all the other responses here and it has given him much needed encouragement after todays fiasco. I will be hitting the phones again tomorrow, trying to locate an Oral surgeon with a heart and not just pockets to fill with cash.

    Lyn

    Lyn, good luck. It is
    Lyn, good luck. It is amazing that not only do we have to fight cancer but some have to fight getting medical care for one reason or another!! Unbelievable!! I'll keep you in my prayers.
    God Bless,
    Debbie