Lung mets. Here goes...

KareGiver
KareGiver Member Posts: 301 Member
Hi Friends,
Back in April 2012, I posted about my 60 year-old husband's possible lungs mets from stage 2, HPV+ tonsil cancer. Back and forth in my mind I have thought whether I should post on this board about our follow up, even PMing friends on this board whether to do this or not. Well, here it is: after biopsy, it was found to be malignant, the same cancer from the tonsil (which was determined to be "pristine"). Initial treatment for this "highly curable cancer" started April 2011.
My husband is now in a clinical trial for incurable head and neck cancer, as the papers state, which we, of course, signed. Chemo every three weeks until whenever - my husband asked "how long," and he was told 7 months without treatment, a year with treatment (and the, "some people do better".} Oh my, is the way I am typing my reaction but many of you will add the words I really said...want to keep this a family friendly cancer blog;)
So here I go...and I DO hope this is still the "highly curable cancer" they hope it was OR Are they finding out that, hmmm, we need to look into this further. Our daughter had the Gardisil vaccination in her early teens and our son, 22 years old (assuming normal college behavior) will get it soon. DO NOT DELAY. Have your kids vaccinated. Our family is devastated by this, but know that "one little cancer cell" can get away.
I have reread this message and know that it is long, but appreciate your letting me share my (our) feelings. Please know I hope we are in the minority, don't be scared and fight this BEAST with all you have...
Many thanks :(...
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Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    Prayers are with you and your husband
    Hello,
    I'm new to the board, and no your meesage was NOT long. We are here to support and lift each other up. I also am dealing with a daughter who has HPV cancer of the cervix that has invaded the uterus. I don't understand any of this....she will have a total hysterectomy at age 30 soon. Then I don't know what else. I am so terribly sorry for the news on your husband. but remember with faith anything is possible. All my thoughts and prayers are sent to your husband, yourself and your children. warmest regards, Katie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Sorry for Your News...
    Unfortunately there are no guarantees, just like the old "everyone is different".

    I'm sure that everyone here has it back in their mind with every ache and pain that doesn't go away in a few days..."Is it back"...

    Just don't give up hope, thought or prayer that he could be one of the "some people do better"...

    Thoughts and Prayers,
    John
  • ToBeGolden
    ToBeGolden Member Posts: 695
    So Sorry
    Please post as often as you need. The first round of radiation did not cure my cancer. Neither did the surgery. I just finished a second round of chemo and radiation. The cancer is beaten back, but is it gone? I hope your husband can hang on. Rick.
  • nick770
    nick770 Member Posts: 195
    So sorry to. Hear about your
    So sorry to. Hear about your husbands battle. I had stage iv tonsil hpv+. You post make me want to fifght harder.
    So just to clarify if he doesn't get any treatment he has 7 months to live and with treatment he will have a year?
  • Ingrid K
    Ingrid K Member Posts: 813
    nick770 said:

    So sorry to. Hear about your
    So sorry to. Hear about your husbands battle. I had stage iv tonsil hpv+. You post make me want to fifght harder.
    So just to clarify if he doesn't get any treatment he has 7 months to live and with treatment he will have a year?

    cancer sucks......
    Lynda, praying for you both. Stay strong and don't give up. Keep on fighting.
    PM me if I can help you in any way....to chat, etc. just let me know.
  • NoDuck
    NoDuck Member Posts: 134
    Ingrid K said:

    cancer sucks......
    Lynda, praying for you both. Stay strong and don't give up. Keep on fighting.
    PM me if I can help you in any way....to chat, etc. just let me know.

    Special Prayers
    For strength, for love, for peace.

    Deb -- caregiver to Dale, Stage III tonsil cancer
  • Jan Trinks
    Jan Trinks Member Posts: 477
    Can definitely relate
    Hi Karegiver:

    First of all, please don't worry about how long your message may be. I did that and was told by all the wonderful people here (that I call my "CSN buds") that's what this is here for and they are here for. My husband was diagnosed in Nov. 2008 and did real well thru chemo and radiation all things considered and for the next year after that and then it came back with avengence! He passed away in Aug. 2010. Treasure every moment you have and will be praying the clinical trial is successful. And you are so right, we are in the minority here and one cell sometimes breaks away. But I still consider Charlie was a survivor and he fought it with all he had and had a wonderful attitude. And as the NC State basketball coach, Jim Valvano, who passed away from this beast, said, "Never give up"! God Bless!

    Jan (Basketcase)
  • joannaw81
    joannaw81 Member Posts: 185 Member

    Can definitely relate
    Hi Karegiver:

    First of all, please don't worry about how long your message may be. I did that and was told by all the wonderful people here (that I call my "CSN buds") that's what this is here for and they are here for. My husband was diagnosed in Nov. 2008 and did real well thru chemo and radiation all things considered and for the next year after that and then it came back with avengence! He passed away in Aug. 2010. Treasure every moment you have and will be praying the clinical trial is successful. And you are so right, we are in the minority here and one cell sometimes breaks away. But I still consider Charlie was a survivor and he fought it with all he had and had a wonderful attitude. And as the NC State basketball coach, Jim Valvano, who passed away from this beast, said, "Never give up"! God Bless!

    Jan (Basketcase)

    Hello Karegiver
    2 days ago I read your post from April and I was wondering how your husband is doing. The reason why I read your post from April it's becasue I was trying to find info about lung mets. My mom went through 2 recurrances but they were all in the head and neck area. After last PET they found a nodule in the lung(it didn't light up)which is 0.5 cm. Doctors say not to worry that it doesn't look like cancer (right now I don't have the paper work and forgot how they decribed it) but I'm still worried. They say wait and watch. Her next PET is in September. It's hard to be positive when you have such a history as my mom. Anyway I just want to say that I am really sorry. Sometimes I wonder how would I handle news like that but I always remember that " God never gives you what you cannot handle". I will keep up in my prayers.
  • KareGiver
    KareGiver Member Posts: 301 Member
    joannaw81 said:

    Hello Karegiver
    2 days ago I read your post from April and I was wondering how your husband is doing. The reason why I read your post from April it's becasue I was trying to find info about lung mets. My mom went through 2 recurrances but they were all in the head and neck area. After last PET they found a nodule in the lung(it didn't light up)which is 0.5 cm. Doctors say not to worry that it doesn't look like cancer (right now I don't have the paper work and forgot how they decribed it) but I'm still worried. They say wait and watch. Her next PET is in September. It's hard to be positive when you have such a history as my mom. Anyway I just want to say that I am really sorry. Sometimes I wonder how would I handle news like that but I always remember that " God never gives you what you cannot handle". I will keep up in my prayers.

    Thanks everyone
    For your comments. Each one touched me and know that we appreciate your thoughts and prayers. Jan, I know from reading posts that you understand too well. Ingrid, I will be in touch. John, thanks for always being there. I want to say everyone's name that posted but I didn't write them all down and my memory stinks. HANG IN THERE! As I said, I do hope we are in the minority here so keep fighting.
    Lynda
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    joannaw81 said:

    Hello Karegiver
    2 days ago I read your post from April and I was wondering how your husband is doing. The reason why I read your post from April it's becasue I was trying to find info about lung mets. My mom went through 2 recurrances but they were all in the head and neck area. After last PET they found a nodule in the lung(it didn't light up)which is 0.5 cm. Doctors say not to worry that it doesn't look like cancer (right now I don't have the paper work and forgot how they decribed it) but I'm still worried. They say wait and watch. Her next PET is in September. It's hard to be positive when you have such a history as my mom. Anyway I just want to say that I am really sorry. Sometimes I wonder how would I handle news like that but I always remember that " God never gives you what you cannot handle". I will keep up in my prayers.

    Hey Joanna
    Hang in there. I've got two 0.4 cm nodules in my lung that have been hanging around for over two years now. My Stanford Doc says the same thing: "not to worry." It's likely they've always been there, as they are so small, they won't show up in every scan.

    Deb
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    D Lewis said:

    Hey Joanna
    Hang in there. I've got two 0.4 cm nodules in my lung that have been hanging around for over two years now. My Stanford Doc says the same thing: "not to worry." It's likely they've always been there, as they are so small, they won't show up in every scan.

    Deb

    Prayers for you Lynda
    Lynda ...will be praying for your husband and you....

    I do believe it helps in the area of strength and fortitude but also in getting well...no matter...prayers will be coming ..do keep us posted

    Tim
  • arndog64
    arndog64 Member Posts: 537
    Tim6003 said:

    Prayers for you Lynda
    Lynda ...will be praying for your husband and you....

    I do believe it helps in the area of strength and fortitude but also in getting well...no matter...prayers will be coming ..do keep us posted

    Tim

    I am so sorry to hear you
    I am so sorry to hear you guys are still battling the beast. I beleive in miracles and the power of prayer. I will be praying for your family. Fingers crossed for a good outcome. Take care my friend and stay positive..Message me if you need to vent.
  • KareGiver
    KareGiver Member Posts: 301 Member
    arndog64 said:

    I am so sorry to hear you
    I am so sorry to hear you guys are still battling the beast. I beleive in miracles and the power of prayer. I will be praying for your family. Fingers crossed for a good outcome. Take care my friend and stay positive..Message me if you need to vent.

    Arndog64...
    Thank you for your prayers...I guess the "highly curable" description for this cancer wasn't meant to be for my husband. He is fighting it, though. So much to live for.
    I hope your husband is doing better. He really has gone through struggles with the treatment but I have faith that they got it all. Take care and thanks again.
  • buzz99
    buzz99 Member Posts: 404
    Lung mets
    I am so sorry to hear of your husband's lung mets. We are dealing with a recurrence also but our Oncologist did not suggest clinical trials. Buzz is getting Erbutux and Carboplatin as palliative treatment. I hope your husband has a good response to the chemo.
    Take care of yourself too. Karen
  • robinleigh
    robinleigh Member Posts: 297
    clinical trials
    My husband had a metastasis, as well, and we have done one clinical trial. He responded very well for four months and then the cancer started to progress again. I'm curious...would you share the trial you are in? We are searching for another one.

    Robinleigh
  • KareGiver
    KareGiver Member Posts: 301 Member

    clinical trials
    My husband had a metastasis, as well, and we have done one clinical trial. He responded very well for four months and then the cancer started to progress again. I'm curious...would you share the trial you are in? We are searching for another one.

    Robinleigh

    Robinleigh
    I will pm you with our info...
  • robinleigh
    robinleigh Member Posts: 297
    KareGiver said:

    Robinleigh
    I will pm you with our info...

    Trials
    We seem to be prepared to do trials if standard chemo doesn't show results and Andy's ecog score and blood work is okay. The lance Armstrong foundation is very helpful and the national cancer institute. It's amazing how many trials ate out there!
  • zinniemay
    zinniemay Member Posts: 522

    Trials
    We seem to be prepared to do trials if standard chemo doesn't show results and Andy's ecog score and blood work is okay. The lance Armstrong foundation is very helpful and the national cancer institute. It's amazing how many trials ate out there!

    Trials
    My hubby dx Dec 2008 Mets to lungs March 2010 , they gave him 1 year with out treatment 2 with, He had done serveral chemos, now on a clinical trial. We will know if it is working July 11, it will be three months since his last Chemo, and when he started the pill.
  • KareGiver
    KareGiver Member Posts: 301 Member
    zinniemay said:

    Trials
    My hubby dx Dec 2008 Mets to lungs March 2010 , they gave him 1 year with out treatment 2 with, He had done serveral chemos, now on a clinical trial. We will know if it is working July 11, it will be three months since his last Chemo, and when he started the pill.

    Thanks Robinleigh and Zinniemay
    For your info about trials. My husband has his first scan on 7/2 (and third chemo on 7/3) so we will have some idea if there has been any shrinkage of the tumors. I am so very nervous. Thinking of everyone!
  • hwt
    hwt Member Posts: 2,328 Member
    KareGiver said:

    Thanks Robinleigh and Zinniemay
    For your info about trials. My husband has his first scan on 7/2 (and third chemo on 7/3) so we will have some idea if there has been any shrinkage of the tumors. I am so very nervous. Thinking of everyone!

    Trials
    Prayers to you and yours. My cousin had metastasized melanoma and was told to get his affairs in order. He found a clinical trial and has now been cancer free 7 years! Never give up trying.