News - Good and Bad?

nkimber
nkimber Member Posts: 46
edited March 2014 in Head and Neck Cancer #1
Hi Everybody,

First of all, let me tell you how amazing you have all been, and how wonderful it is to hear all of the recent good news on your scans, and also for those of you who just finished with treatment. I have never "met" such an amazing group of people!

So, A quick update on me. I have Mucoepidermoid Carcinoma of the Minor Salivary Glands (in my throat), with lymphatic spread and mets to bone in a couple places. I'm at Johns Hopkins and the course of action was to start off with chemo (a combo of cisplatin, cyclophosphamide, and doxirubicin/adriamiacin). I have had two rounds of chemo and then a CT this past Monday to review progress. I met with my onco yesterday to review the results... she told me it was much better than she expected and that the tumor had not progressed, that it was stable. (Also, I can feel some of the smaller tumors under my skin are shrinking) Then she proceded to tell me that I could not be cured. She obviously does not have the best bedside manner. I gathered from her that chemo and/or clinical trials would be my path... no surgery or radiation.

First of all, let me say that I do not believe her. I am doing so many things aside from chemo... eating really well (drinking a glass of green joice as I type this!), exercise, meditation, yoga, PRAYER, and anything else I can possibly think of. I'm just confused I guess, and looking for some input/ advice/ words of wisdom from all of you experts out there. The issue is that the cancer is very rare, and it is so difficult to find a doctor who has even taken a case like this before. So, of course they are unsure about a "cure", but I'm ready to have everything possible thrown at me... I have taken the chemo really well so far (first week is a little rough but weeks two and three I have been feeling perfect). I think after yesterday I am just a little (ok, maybe a lot) more scared than I was before, and want to make sure both myself and my doctor are doing everything possible to kick this things butt!!! I did find somebody on another board with exactly the same cancer, who went through chemo earlier this year and posted about success in shrinking the tumor and not even needing surgery! Problem is she is no longer on those boards so I can't find out what her treatment regimine was exactly.

Thanks in advance for everything... Lots of hugs and prayers to all of you!!!

Nicole

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Love you Attitude
    I also do not believe your doctor. When I was diagnosed almost 15 years ago my SCC was not rare but they certainly did not have much to fight the cancer. My doctor shared with me that whipping cancer was 60-70 % positive mental attitude. Every time he has checked me out he continues to say the same thing "can not find, keep having fun". I now believe beating cancer is 70-80% positive mental attitude and Nicole you are full of it, I love your thoughts and plan and what you continue to do. Hugs and prayers being sent your way along with prayers for continued support from your family and friends and wisdom for your doctor's.

    Keep that "never, never, never give up" swagger going!

    John
  • Glenna M
    Glenna M Member Posts: 1,576
    Cured???
    You are wise to not believe your doctor when she says you can't be cured. In May of '09 I was diagnosed with SCC larynx and NSCLC Adenocarcinoma in my left lung. I was told that both were inoperable so they were incurable. I'm now 13 months post treatment and still in remission. A very good friend of mine was diagnosed with cancer in his tonsils, he had them removed and had radiation and was told he was cured. Since his "cure" he has had to have his appendix removed because of a cancerous tumor and last week they removed part of his colon because of cancer. I will take my remission over his cure anyday.

    Maybe your doctors are just being cautious about misleading you into a false sense of security by telling you they can cure you. Or maybe it's just because your cancer is so rare that they really don't know whether or not you can be cured.

    No matter what the reason is, just keep your positive attitude and your healthy lifestyle going strong. Many of us have shocked our doctors with our recovery and I feel you will do the same.

    Bottom line is...don't spend your time worrying about a cure, spend your time enjoying your life. Surgery doesn't always guarantee a cure!!!

    Stay strong,
    Glenna
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Lifting you up, Nicole
    You have a terrific attitude and it will serve you well in this fight.

    Hold on to your great thoughts, proceed as you planned and you will do well.

    Hugs!
  • stevenl
    stevenl Member Posts: 587

    Lifting you up, Nicole
    You have a terrific attitude and it will serve you well in this fight.

    Hold on to your great thoughts, proceed as you planned and you will do well.

    Hugs!

    Chances
    Hi Nicole,

    When my ENT told me I had stage 4 cancer he said it was very serious. I also noticed that he kept looking straight into my eyes. All of the distractions of my wife and daughter crying and he never stopped looking. After about a minute, I asked him what next? The first thing he said was YOU WILL BE FINE. He said he knew by the look in my eyes. Never never give up. Stay strong and meet this head on. And certainly never let anyone tell you there is no cure. Go kick it and keep kicking it till it's dead.

    Beat,
    Steve
  • mixleader
    mixleader Member Posts: 267 Member
    Go, Nicole
    Everything I have seen and read also tells me that a positive attitude is so essential and it sounds like you have that. I can not speak specifically for your type of cancer as mine was in the parotid salivary gland, but I do not believe in any phrases that start with "It can't be done" or something similar. Fight this beast with all of your strength and know that there are a lot of people hoping and praying with you for a cure.

    Roger
  • nkimber
    nkimber Member Posts: 46
    mixleader said:

    Go, Nicole
    Everything I have seen and read also tells me that a positive attitude is so essential and it sounds like you have that. I can not speak specifically for your type of cancer as mine was in the parotid salivary gland, but I do not believe in any phrases that start with "It can't be done" or something similar. Fight this beast with all of your strength and know that there are a lot of people hoping and praying with you for a cure.

    Roger

    Thank you all so much for
    Thank you all so much for your kind words and wisdom! I will be as strong as it takes... and will not give up until the stupid cancer is gone. I am blessed to be able to move on to round three tomorrow and will be praying and thinking positive thoughts the entire seven hours it takes to get "infused" :)

    Prayers coming your way as well,
    Nicole
  • rozaroo
    rozaroo Member Posts: 665
    nkimber said:

    Thank you all so much for
    Thank you all so much for your kind words and wisdom! I will be as strong as it takes... and will not give up until the stupid cancer is gone. I am blessed to be able to move on to round three tomorrow and will be praying and thinking positive thoughts the entire seven hours it takes to get "infused" :)

    Prayers coming your way as well,
    Nicole

    Nicole
    Stick with your wonderfull positive attitude. I find praying get's me back on track when I start to slip up & as we know all Dr's think differently. Just hang in there & remember our thought's & prayer's are with you.
  • adventurebob
    adventurebob Member Posts: 691
    Dr. God huh?
    I've always thought God made those big decisions like cureable or not cureable. Maybe your doc's in the wrong line of work. Clearly she doesn't see how incredibly strong and powerful you are. It will be fun watching her realize that as you are healed and cured. Might be just what she needs. Keep showing her what you got Nicole. Change the world. Thinking of you in chemo today. All my best,

    Bob
  • nkimber
    nkimber Member Posts: 46

    Dr. God huh?
    I've always thought God made those big decisions like cureable or not cureable. Maybe your doc's in the wrong line of work. Clearly she doesn't see how incredibly strong and powerful you are. It will be fun watching her realize that as you are healed and cured. Might be just what she needs. Keep showing her what you got Nicole. Change the world. Thinking of you in chemo today. All my best,

    Bob

    THANK YOU
    You guys are the best. Reading your words of encouragement is so inspiring, and it mkes me want to do even better!!!! I'm sitting in chemo as I type this... very happy because I know it is doing its job, and I'm doing mine by praying, attempting to meditate, smiling at the other patients, and bringing healthy snacks. I'm also thinking of all of you, and how strong and inspiring you all are... wishing you all the best prognosis in the world!

    Lots of love and hugs,
    Nicole
  • nkimber
    nkimber Member Posts: 46

    Dr. God huh?
    I've always thought God made those big decisions like cureable or not cureable. Maybe your doc's in the wrong line of work. Clearly she doesn't see how incredibly strong and powerful you are. It will be fun watching her realize that as you are healed and cured. Might be just what she needs. Keep showing her what you got Nicole. Change the world. Thinking of you in chemo today. All my best,

    Bob

    THANK YOU
    You guys are the best. Reading your words of encouragement is so inspiring, and it mkes me want to do even better!!!! I'm sitting in chemo as I type this... very happy because I know it is doing its job, and I'm doing mine by praying, attempting to meditate, smiling at the other patients, and bringing healthy snacks. I'm also thinking of all of you, and how strong and inspiring you all are... wishing you all the best prognosis in the world!

    Lots of love and hugs,
    Nicole
  • JUDYV5
    JUDYV5 Member Posts: 392
    nkimber said:

    THANK YOU
    You guys are the best. Reading your words of encouragement is so inspiring, and it mkes me want to do even better!!!! I'm sitting in chemo as I type this... very happy because I know it is doing its job, and I'm doing mine by praying, attempting to meditate, smiling at the other patients, and bringing healthy snacks. I'm also thinking of all of you, and how strong and inspiring you all are... wishing you all the best prognosis in the world!

    Lots of love and hugs,
    Nicole

    You are so strong
    I am amazed how strong you are. When I recieved chemo there is no way I was as positive as you. It is obvious that doctor didn't know you when she said there was no cure. Like you said the chemo works. I know you are such a positive influence on that ward right now.
  • kingcole42005
    kingcole42005 Member Posts: 178
    nkimber said:

    THANK YOU
    You guys are the best. Reading your words of encouragement is so inspiring, and it mkes me want to do even better!!!! I'm sitting in chemo as I type this... very happy because I know it is doing its job, and I'm doing mine by praying, attempting to meditate, smiling at the other patients, and bringing healthy snacks. I'm also thinking of all of you, and how strong and inspiring you all are... wishing you all the best prognosis in the world!

    Lots of love and hugs,
    Nicole

    I am so sorry you were scared by your doctors lack of grace.
    I am so sorry you were scared by your doctors lack of grace. You are doing exactly what you need to do, but there are other doctors out there that are more knowledgable than others. Maybe you need to check around a bit. I don't know where you live, but I went to a Dr. at UCSF for my surgery, Dr. Eisele. He was wonderful and VERY knowledgable. He only deals with Head and Neck cancer. He is not just an ENT he is an otolarynologist. He is one of the top doctors in his field I beleive. There are other doctors of his caliber out there, keep looking and never give up!!!
  • Pam M
    Pam M Member Posts: 2,196
    Thanks, Doc
    Nicole,

    I agree with Glenna. One person's "remission" can be better than another's "cure".

    Did doc leave it at "cannot be ccured"? Does she have a game plan for keeping it controlled? I know the timing sucks, but are you looking into other oncologists?

    The way I see it, you've already done better than she thought you'd do. Keep right on surprising her.
  • nkimber
    nkimber Member Posts: 46
    Pam M said:

    Thanks, Doc
    Nicole,

    I agree with Glenna. One person's "remission" can be better than another's "cure".

    Did doc leave it at "cannot be ccured"? Does she have a game plan for keeping it controlled? I know the timing sucks, but are you looking into other oncologists?

    The way I see it, you've already done better than she thought you'd do. Keep right on surprising her.

    I am not taking this lying down!
    The doc's game plan is more of the same chemo, then a potential clinical trial. Yes, I am looking into another oncologist at Johns Hopkins (I met her before and she has a much better attitude!). I do not want to delay my treatment but I am also looking into getting an appointment at University of Maryland Medical Center just across the street. I will hopefully confirm something early next week. I'm also going in next week to see the surgeon who was originally supposed to do surgery (whom I love). I figured that talking through things with him might give me a better perspective on everything. I just want to be sure that they are beign as aggressive as possible, and it is difficult to get that feeling when my current doctor believes what she believes.

    Thank you so much for the encouragement... You're right, I will keep on surprising her! I take this as a challenge. Here's to lots of prayers that round three kicks some major butt, and that the next scan is amazingly beautiful, and shows that the chemo is doing an even better job than it needs to be to send me onto a very long, happy, remission-filled life!!!

    Lots of hugs and prayers to all of you,
    Nicole
  • ekdennie
    ekdennie Member Posts: 238 Member
    cure
    Nicole,
    I kept looking on here for any updates on you and I must have missed this post! I hope you are doing well after your chemo treatment...you are always in my thoughts and prayers...you can kick it!

    as for our type of tumor...I asked my ENT a week ago Friday, "now that I am done with surgery and radiation, where are we now?" all he could say is that we will have to wait and see how my scan goes in about 6 months. he had previously said that he could only give me a cure if it was low grade with clean margins and no spread...intermediate, like mine, and high grade like yours...they often don't give a possible outcome of cure, but rather NED (No Evidence of Disease)...so keep your focus on getting there! Find a doctor who makes you feel uplifted, who will fight with you...not tell you there is no cure....those are bad words...not words of hope. you are strong, you are smart, you are braver than you realize. You can beat this...you just need a dr who can help. If you need another opinion...I can help by giving you my dr's name and number. I am in Oklahoma City, but he is supposed to be the best in the region and he has a great bedside manner! his prayers are the best I have ever heard...I leave feeling uplifted, even in the face of bad news!

    I am so happy that it hasn't spread anymore and that the chemo seems to be working! You are in my prayers. Sending you a huge hug! write me anytime.
    best of luck and tons of love!
    elizabeth
  • nkimber
    nkimber Member Posts: 46
    ekdennie said:

    cure
    Nicole,
    I kept looking on here for any updates on you and I must have missed this post! I hope you are doing well after your chemo treatment...you are always in my thoughts and prayers...you can kick it!

    as for our type of tumor...I asked my ENT a week ago Friday, "now that I am done with surgery and radiation, where are we now?" all he could say is that we will have to wait and see how my scan goes in about 6 months. he had previously said that he could only give me a cure if it was low grade with clean margins and no spread...intermediate, like mine, and high grade like yours...they often don't give a possible outcome of cure, but rather NED (No Evidence of Disease)...so keep your focus on getting there! Find a doctor who makes you feel uplifted, who will fight with you...not tell you there is no cure....those are bad words...not words of hope. you are strong, you are smart, you are braver than you realize. You can beat this...you just need a dr who can help. If you need another opinion...I can help by giving you my dr's name and number. I am in Oklahoma City, but he is supposed to be the best in the region and he has a great bedside manner! his prayers are the best I have ever heard...I leave feeling uplifted, even in the face of bad news!

    I am so happy that it hasn't spread anymore and that the chemo seems to be working! You are in my prayers. Sending you a huge hug! write me anytime.
    best of luck and tons of love!
    elizabeth

    Thanks Elizabeth!
    Elizabeth, As always, I love getting your notes! I would honestly love getting the name and number of your doctor... I go in to see my ENT (I haven't been working with him since they put me on chemo) on Wednesday and hope to have a good conversation with him as well, but I'm really looking for somebody who sounds exactly like what you have. I will absolutely focus on NED... and I know I can get there and stay that way, I just want to be sure the doctors are fighting as much as I want them to!

    I am actually doing pretty good after the chemo last Thursday! I was a bit run-down yesterday, but not as nauseous as I was last round! It helps because I can eat a bit healthier... When I'm nauseous only a couple things sound good to me :)

    You are of course always in my thoughts and prayers... Lots of love and hugs,
    Nicole
  • ekdennie
    ekdennie Member Posts: 238 Member
    nkimber said:

    Thanks Elizabeth!
    Elizabeth, As always, I love getting your notes! I would honestly love getting the name and number of your doctor... I go in to see my ENT (I haven't been working with him since they put me on chemo) on Wednesday and hope to have a good conversation with him as well, but I'm really looking for somebody who sounds exactly like what you have. I will absolutely focus on NED... and I know I can get there and stay that way, I just want to be sure the doctors are fighting as much as I want them to!

    I am actually doing pretty good after the chemo last Thursday! I was a bit run-down yesterday, but not as nauseous as I was last round! It helps because I can eat a bit healthier... When I'm nauseous only a couple things sound good to me :)

    You are of course always in my thoughts and prayers... Lots of love and hugs,
    Nicole

    Keep fighting!
    Nicole!
    I am so happy to hear that you are feeling better and that you are not as nauseous! I will email you my dr's name and number!

    Thinking about you! Hugs!
    elizabeth