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Luckyme65
Luckyme65 Member Posts: 9
in Head and Neck Cancer #1

 

Hello everyone,

This is my first post.. Not all that happy about being here, but this is where I am...This is my story:My Husband of 20yrs Yesterday, Yes Happy Anniversary to me:) whom is 52 yrs old has stage IV, base of tongue cancer. Diagnosed 8/14. Has had 35 rounds of Rads, and 3 LOOOOng sessions of Chemo at Sloan..No surgery as his has crossed the dreaded midline...(anyone else out there with this diagnosis?) He has been done with treatment since 12/14 and is still having a hard time...Lost a ton of weight. No PEG, so down 60lbs.(Thank god he had some xtra to loose) He is now very frail, and tired, hardly eating, just protein shakes..Im so hoping this turns the corner soon..and starts to like food again.. We are such FOODIES and now not so much:/ So much anxiety over the next steps (PET scan on Monday) worried for him, tired of it all...Ive had to work this whole time, take care of him and maintain my strength so I can pay the bills.. Gosh this is hard...I feel like every day is ground hog day..Anyone out there feel like this?  How do I look for others with the same diagnosis my hubby has.. I would love to see some positive news for him/me...

Thanks CSN familyK~

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  • wmc
    wmc Member Posts: 1,804
    #2
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    Welcome to the H&N Group

    Welcome, and also sorry you need to be here. Yes there are many that had BOT cancer and will chime in with some better understand. Mine was T3;N0;M0; 3mm tumor just above my larynx and on my left vocal cord. I only had surgery to remove my Larynx [voice box] and 86 glands in my neck. A double neck dissection and cut from ear to ear, but no chemo or radaition. If the Tx ended at the end of Dec. he should start to feel better, but it it a very slow process. AFter the Tx he would still be cooking from it and it can take a few months to get over it. He might have lost his tast and that takes some time to get back. It is very hard on the wife/caregiver as you feel his pain but just can't do anything to help. But you do help more than you will ever know. You need to have some time out scheduled so you can rest and recharge.

    It is a very rough road he went down and still is. But there is light at the end of that tunnel. He will never get back to the same, but he will get to a "New Normal" that is good too. First and formost; He is alive. You both just take one day at a time, and today is the only one that matters. Later when he is better, is when you have the tomorrows. In my 16 months I have seen many with BOT and even met one who had almost all of his toung removed and his larynx as well. He can eat and talk. No one ever thought it was possable. They told me someone who had a laryngectomy can't whistle, but I can. It took working at it every day for two months but I can and also blow up a balloon, and i'm stage 3 emphysema. It is just how hard you want it and what you are willing to do to get better. Let him know we will add you both to my very long prayer list. He will get better, but it is S L O W ........

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    welcome

    Luckyme65,

    Welcome to the H&N forum, sounds like you have already been through the toughest part, now it is time to bring it home.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).

    You say he is tired, start moving around, every little bit helps.  Make sure his blood tests are satisfactory, check his thyroid.

    As for eating I tried all the normal foods and soft foods, but I had such  an aversion to taste and feel I chose to live mostly on smoothies and protein drinks for 7 months.  Don’t get me wrong, I was always sampling things, matter-of-fact sweet corn on the cob tasted good from day one, go figure.  Then one day my taste buds started working and I rejoined the eating world.

    He needs to figure out what works for him.

    Good luck,

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #4
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    K

    I was in the same boat as your husband, Happy Anniversary. I am sure you will have to put up with him for many more, it's just this one seems way out of the ordinary. I had stage 4 base of tongue and they removed part of my tongue, epilglotis, uvula, and a few lymph nodes. I had 30 rounds of radiation and overall lost 95 pounds however that was 5 years ago and I am working on gaining them all back and then some. Ground hog day has becaome one of my favorite movies because like you and all of us on here live out the same day for months. Just to change things up I would take my oxycodone at a different time the following day simply to have some type of control over what happened in those days.

    Like everyone else has stated your over the worst now it's time for him to begin healing. It's a slow process but a rewarding one when you begin to get taste back especially for certain things that were your favorite before treatment. I finished treatment Marcxh 30th so I would go out and enjoy the change in season maybe do some work in the yard and then sit and rest without pushing myself to hard. Bottom line is we are all different in all aspects of how we reacted to treatment, how we heal afterwards, and how we heal. It was the hardest thing I've gone through and I will go out on a limb and say it was probably the same for my wife. (Im back off that limb because she may have tried to push me off). As John said we all suffer from scanxiety and they did find what I believe they called hot spots because I was still frying from the radiation but I am cancer free now. 

    Life is good.................. and just down the road a bit your husband will agree.

          Jeff

  • MrsBD
    MrsBD Member Posts: 615 Member
    #5
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    Two months ahead of you

    I am two months ahead of your husband and doing really well. My diagnosis was BOT, Stage 4b, non HPV,  one lymph node involved on each side. I had chemo (Erbitux) and 33 rads, no PEG, lost 40 lbs. The three weeks after treatment ended were the worst, but slowly things got better. You mentioned being foodies. I was a cooking teacher! For me, the return of normalcy was being able to eat a good old Milwaukee fish fry about three weeks ago. Spicy foods are still out. I still need about ten hours of sleep a night and am a little weaker, but it's improving. Your husband is blessed to have a supportive wife like you. This is the hardest time and you can look forward to better days soon.

  • Sailor123
    Sailor123 Member Posts: 97
    #6
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    I love your groundhog day

    I love your groundhog day reference.  That really sums it up perfectly.

    Its such a slow recovery, but I promise you he will get better.  I'm still not into food like I used to be and i'm 10 months out, but it keeps getting better.  You probably feel guilty eating around him?  Don't.  You need to stay strong so you can continue to be helpful to him.

    Its probably a little soon yet, but when he's able try soup.  Thats mostly what I live on now days.  Also, cottage cheese.  Good protein.

    Good luck to you Groundhog girl.

    Shirley

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
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    GroundHog Days..

    We have all been there..., usually described mid-way through the 35 days of rads... Same thing everyday, day after day...

    I was Dx STGIII SCC Tonsils HPV+, that was in January 2009. Tonsils came out, sixteen weeks of chemo (four types) and 35 days of rads during... I too was ummm well nourished.., and had no PEG.

    I lost around 45# during the venture.. I was down to mainly water, Ensure and a few sliced DelMonte peaches a few times each day, for close to 3-4 months... of course preceded and followed up with ample pain meds...

    Little by little my taste and saliva returned, it was pretty much zero for several months.. It took a good several months to be able to eat, or have much desire..., and all of two years to get all of my taste back and most saliva.

    It will come, more than likely... Like Matt referred..., try a lot of different things, stay with what is good and revisit the foods not as much down the road.

    I'm now over six years, post Tx, all clean and clear and on no meds, other than protonix for acid reflux..., a gift of rads or chemo.

    Also as Matt referred, a lot of us have thyroid damage that shows up usually several months to a few years post Rads. Many have eventually went to Synthroid or similar to help with that..., so far I've been lucky concerning that. They can test for that with blood testing, the Free T4, and TSH.

    Welcome to the gang, hang tough, be there for your man..., e's going to be with you for awhile... I'm sure his scans will be OK... But.., a few do have some residual show up on the first scans do to rads and Tx damage... So IF that happens, try not to be too spazed..., that to isn't unusual...

    We all tend to suffer from what we call "scanxiety"...

    The term GroundHog Days has been on here for several years..., you picked it up fast.. 

    Best,

    John

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
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    K, i am praying for strength

    K, i am praying for strength for you and your hubby.  hang in there b/c it will get better.  you will get great information here from those who have had the same cancer and possibly the same tx.  i'm sorry you need to be here but since you do, its a great place to be.  there is a light at the end of this tunnel, you just have to be a little more pateint and look really hard.  it's there.

    God bless you and hubby,

    dj

  • lornal
    lornal Member Posts: 428
    #9
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    depression

    During and after my treatment I was so very depressed, but didn't know it.  A month or so after completion of treatment, I got a new primary care (I didn't see one the whole time), and he put me on anti-depressants.  It wasn't until then did I actually start healing and drinking and eating.  Get a check up with a primary care if not already done.  I lost 90 pounds during treatment (and after).  I did gain it all back.

    I'm a foodie too - It took me a good year before I really became interested in cooking again.

    Unfortunately I did have another cancer - but couldn't swallow, eat, or talk before we found out it was cancer again.  But, I had a totaly laryngectomy, can swallow and eat anything I want, and even talk - with an electorylarynx.

    And, I'm cooking again on days I don't work.

    Best to you and your husband

    Lorna  2007 & 2014

     

  • Luckyme65
    Luckyme65 Member Posts: 9
    #10
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    wmc said:

    Welcome to the H&N Group

    Welcome, and also sorry you need to be here. Yes there are many that had BOT cancer and will chime in with some better understand. Mine was T3;N0;M0; 3mm tumor just above my larynx and on my left vocal cord. I only had surgery to remove my Larynx [voice box] and 86 glands in my neck. A double neck dissection and cut from ear to ear, but no chemo or radaition. If the Tx ended at the end of Dec. he should start to feel better, but it it a very slow process. AFter the Tx he would still be cooking from it and it can take a few months to get over it. He might have lost his tast and that takes some time to get back. It is very hard on the wife/caregiver as you feel his pain but just can't do anything to help. But you do help more than you will ever know. You need to have some time out scheduled so you can rest and recharge.

    It is a very rough road he went down and still is. But there is light at the end of that tunnel. He will never get back to the same, but he will get to a "New Normal" that is good too. First and formost; He is alive. You both just take one day at a time, and today is the only one that matters. Later when he is better, is when you have the tomorrows. In my 16 months I have seen many with BOT and even met one who had almost all of his toung removed and his larynx as well. He can eat and talk. No one ever thought it was possable. They told me someone who had a laryngectomy can't whistle, but I can. It took working at it every day for two months but I can and also blow up a balloon, and i'm stage 3 emphysema. It is just how hard you want it and what you are willing to do to get better. Let him know we will add you both to my very long prayer list. He will get better, but it is S L O W ........

    Bill

    Thanks Bill,
    I just added

    Thanks Bill,

    I just added another thread. I really am looking for someone with the same stage as my hubby to help me understand how the next few years look. I would love it if they had a section that was for just stage IV, unrectable, cross midline, mets to Nodes on both sides...I want to know their stories, so I can get a better idea of what his may look like.. I find it frustraing when I see that most people have surgery. His doc has never mentioned surgery after we had gotten our opinion from Lennox Hill hospital, deeming him inoperable. I just want to know if he will need surgery, or more treatment to keep at bay etc.. It a horrible disease Bill, and I wish you, and everyone here the best.. THanks you

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
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    Welcome to this great forum, Lucky...

    I'm sorry you didn't find us sooner, but still....you are LUCKY to find us.  This is a great place for getting information....GREAT information.....and yes, finding out if what is happening is "normal"...or in our personal venacular...."abi-normal".  Like John (Skiffen) said....I think it's wonderful that you picked up on the ground hog days idea.....I heard it when I first got here, and found myself living it, too :).

    I know you're looking at his recovery and thinking..."damn, he finished the middle of December, and he's still feeling like schmidt"....the one thing that holds true here is....recovery takes a LONG time.  It's not like the flu, where you get done taking antibiotics and within a few days all is back to normal.  At 2 1/2 months out of treatment, I was very tired...and stayed that way until about 6 months....but truly didn't come back until over a year out.  Saliva and taste buds are still at 50%...but hey....that's way better than when they were at 10%...and even now at 2 1/2 years out of treatment I'm still getting improvements....still very slow, but always better. 

    As Matt said....getting up and moving....walking is what I did....to end of the yard at first, then further every day....start building up the muscles that were lost during treatment.  Also....the more shakes he puts down, the better he will feel.....he may never be a foodie again....and that might be good!  This is not a time to lament how good food used to taste, but a time to feed the body so it can get strong and life can get on the move again.  Depression strikes many of us after treatment is over....it's like we were actively fighting one day...and the next day that part was over....now what?  Many many of us have used antidepressants temporaily to get over this hump. 

    There is a forum on Facebook with many oral cancer survivors....I think the group has about 2000 members.  If you are on Facebook, and want to join, befriend me there and I'll hook you up.  Jackie Larrick Stevens. 

    p 

  • cid817
    cid817 Member Posts: 58
    #12
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    A couple months after my

    A couple months after my hubby was done with treatment he seemed to be getting more tired, depressed, sick feeling and wanting only to constantly sleep.  He had no desire to eat or drink anything. Someone on this forum mentioned that he might be dehydrated and suggested I push him to drink more water.  I nagged and pushed enough that he finally got out of bed and started drinking water and pouring it down his feeding tube when he didn't feel he could swallow any.  He was surprised how much better he felt after being more hydrated.  I think we all sometimes forget how important water is for us.

    Hope he's feeling better.

  • avisemi
    avisemi Member Posts: 172
    #13
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    i hope you are already

    i hope you are already encouraged by all the responses!  my husband finished treatment recently and I KNOW what you are talking about! Sick husband, full time job , a toddler and a baby here.   It is so hard for us caregivers too!  I certainly have had my low points and thankfully found encouragement here. 

    Somethibg that helps me a lot is to list all the positives happening for us right now. Sometimes they are pretty sad/funny like, he is not feeling better but isn't feeling worse either!  I count them all, big and small and this helps both of us feel encouraged and better. 

     

     

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