UPDATE ON MY METS TO MEDIASTYNUM AND LUNG

luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
in Head and Neck Cancer #1
Hi and hope you are all well and ready to celebrate Thanksgiving. I am just about half way through my second battle and I must say I am having a very hard time coping with the whole "treatable but not cureable" diagnosis. My first scan at 6 weeks revealed that the tumors in my lung had not shrunk, but have changed in appearance indicating the druge are having a positive effect. The tumors in my Mediastynum must still be too small to show up on a CT scan, as they only were revealed on a PET Scan. I am doing Erbitux evry week, and Carboplatin and a 4 day infusion of 5FU every three weeks. The doc's all tell me that the worse the side effects are, the better the drugs are working to kill my cancer. Don't know if it is true or BS, but since I look like a blistered troll now, head to toe acne, mouth sores, finger and toe nail infections ETC. I will assume it is working.

I know the "treatable" thing could give me many years of having cancer, but in remission, or it could take me down quick. I was so close to my two year NED from the first battle, and was wanting to know if any of you have or are battling severe depression, lack of interest in your career, insecurity with your marriage/spouse ETC. I am going to see a Psychiatrist with a specialty on Oncology next week to get some help.

Looking for any advice from anyone who is "in my shoes" regarding the deperssion, or who has a simillar diagnosis.

Do not let my "glass is half empty" attitude deter from everything we still need to be thankfull for.

I will pray for all of you on Thanksgiving.

have a good one.

Mike

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    tough fight
    Hi Mike,

    I am sorry about this battle you are in, it would be difficult (and depressing) for any of us. It sounds like your team is holding back any increase. The CT is used for sizing the PET shows activity. That in itself shows promise for your Mediastynum area and the report your lung region isn’t getting worse, all leans in your favor.

    I feel your acne as I had Erbitux and I am still losing a big toe nail. I was a site to see.

    As for the depression, that was bound to happen, this stuff is way out of the realm of normal. Good luck on that front. The only similar thing I experienced was the rad anxiety and I took a Lorazapam for that (not quite depressions equal).

    Best always,

    Matt
  • rush1958
    rush1958 Member Posts: 223 Member
    #3
    Holding the Beast at Bay
    Mike,

    First, let me send some positive mojo your way - all the best my friend!

    I'm sorry to hear you have to battle the beast again. It sounds like the chemo-cocktail may be doing some positive things for you - other than making you relive puberty and the chicken pox again!

    Just remember, if you fight the beast to draw and hold him at bay - you win. That's the name of the game. Take joy in busting the beast up a little.

    I'm in your corner and I'm rooting for you!

    Rush
  • katenorwood
    katenorwood Member Posts: 1,912
    #4
    half full my friend !
    Mike,
    You are in the middle of the battle right now. I haven't been given the green lite to begin yet ! I was going to post similar feelings earlier today but didn't have the words to voice them. I intend to fight, and am right beside you in all of those feelings of the undescribable. I'm glad you are reaching out....all my prayers and warmest thoughts are with you Mike ! Katie
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I didn't have Erbitux, but I did have the 5FU....
    the 5FU tore my mouth apart...everybody told me that was the FU part of the drug :). I'm glad to hear tho, that the treatment seems to be working (I kinda of believe the stuff they say about the side effects...they don't win anything for coming up with the best story to tell the patients...).

    It's GOOD that you're seeking help with the emotional roller coaster...Reflection is good for the soul, unless we have so much time and so much "stuff" to reflect on, that mentally we start rewriting the whole story, and what the what truth is becomes muddled and foggy. You have a LOT on your plate right now...a counselor can help you keep the important things and let you dump what is not. You're a fighter, I know you are...there's more than physical bumps in road with this disease...the emotional bumps are just as hard to deal with.

    p
  • luvofmylif
    luvofmylif Member Posts: 344
    #6
    katenorwood said:

    half full my friend !
    Mike,
    You are in the middle of the battle right now. I haven't been given the green lite to begin yet ! I was going to post similar feelings earlier today but didn't have the words to voice them. I intend to fight, and am right beside you in all of those feelings of the undescribable. I'm glad you are reaching out....all my prayers and warmest thoughts are with you Mike ! Katie

    While I can't relate totally
    While I can't relate totally to your diagnosis because I have not walked in those shoes I can say that I understand your feelings and a lesser person would not have the strength you have. I think it is a good idea to talk to someone about what you are going through. I have entertained the thought myself, but so far the support I have had on this site has helped me along with support of family and friends.

    Keep fighting. As my husband always likes to remind me,

    Yesterday is history
    Tomorrow is a mystery
    Today is a gift.

    Joan
  • Pumakitty
    Pumakitty Member Posts: 652
    #7
    Hi Mike
    I am amazed at your courage. I am sorry to hear the side effects are so rough. In response to your question about depression, I do believe that my father is suffering from depression, but wil not admitt it. He has almost completely withdrawn from my mom. He also seems to have little interst in anything around him. The doctor has talked to him, but he will not say anything about how he feels.

    He has had one reoccurance and like I posted I think he will be starting chemo again soon. He seems to have gotten worse since the reoccurance. I hope the psychiatrist can help you and I am glad to see you are trying to get some help with what you are feeling.


    Much hugs,

    Kathy
  • ditto1
    ditto1 Member Posts: 660
    #8
    If I may
    say, I believe we all hit a level of depression thru the process of fighting the beast. It takes its toll on our body but also our mind and spirit. So I think you indeed should seek help to get thru it. When our bodies are attacked by cancer everyone will pray for us and provide care and hope, but sometimes when we need care for our mind and spirit we wonder if we are just being weak or not coping. Well that is not the case in my opinion it takes courage to seek help for anxiety and or depression and Lord knows this beast can create both. So I may not be dealing with your exact situation now but we all know that it to could happen to any of us and I would indeed be seeking help if I thought it would help. Good luck Mike and have a Happy Thanksgiving. Your in our prayers.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Mojo Mike...
    Mike, glad that you are feeling like crap....(if that is indeed a good sign the Tx is kicking cancer butt)....

    Sorry that's what it takes, but you know as well as any of us, the tougher the treatment, the harder it is for the cancer to survive...so hang in there and endure my friend....you are tougher.

    As for the depression, it's easy to have all of those emotions under the circumstances. Not being in the best physical shape to battle just adds to it.

    I'm sure the docs can get you headed in the right direction and get your cancer azz kickin boots laced up.

    Mojo Mike...cancer trembles when it hears that name....

    Best,
    John
  • hawk711
    hawk711 Member Posts: 566
    #10
    CivilMatt said:

    tough fight
    Hi Mike,

    I am sorry about this battle you are in, it would be difficult (and depressing) for any of us. It sounds like your team is holding back any increase. The CT is used for sizing the PET shows activity. That in itself shows promise for your Mediastynum area and the report your lung region isn’t getting worse, all leans in your favor.

    I feel your acne as I had Erbitux and I am still losing a big toe nail. I was a site to see.

    As for the depression, that was bound to happen, this stuff is way out of the realm of normal. Good luck on that front. The only similar thing I experienced was the rad anxiety and I took a Lorazapam for that (not quite depressions equal).

    Best always,

    Matt

    Want to add my positive thoughts..
    I had depressed days during all the treatments for H&N cancer. I had a feeding tube for over a year and had to work fulltime with a tube and not telling anyone. couldn't eat crap and felt worse all the time, and felt I'd never get better, but I was glad to be here....I hope you can find the strength to be HERE and enjoy the day. None of us know when the days will end, as you know. I always remember what Lance Armstrong said, "pain or depression are short term but giving up is forever. So fight hard Mike and don't ever give in or give up. Crazy things happen to people going through treatment, ask Hondo. He was given a few months to live many years ago, so stay in there and keep fighting Mike. You have too....
    Saying an extra prayer for you to find the strength my friend
    Steve
  • KareGiver
    KareGiver Member Posts: 301 Member
    #11
    Skiffin16 said:

    Mojo Mike...
    Mike, glad that you are feeling like crap....(if that is indeed a good sign the Tx is kicking cancer butt)....

    Sorry that's what it takes, but you know as well as any of us, the tougher the treatment, the harder it is for the cancer to survive...so hang in there and endure my friend....you are tougher.

    As for the depression, it's easy to have all of those emotions under the circumstances. Not being in the best physical shape to battle just adds to it.

    I'm sure the docs can get you headed in the right direction and get your cancer azz kickin boots laced up.

    Mojo Mike...cancer trembles when it hears that name....

    Best,
    John

    Dear Mike,
    I am glad to see you have posted but so sorry things are so tough. It is the strong person that goes for therapy! The side effects sound really rough but I do hope that is a good sign. If I may, I am actually HOPING my husband is strong enough now for the drugs in your trial. After a weekend in the hospital draining fluids from around his lungs, we go to the oncologist tomorrow to find out. DAMN CANCER!!!!!

    Saying that, I am thankful for you and all the others that express what we must all be feeling - and for the courage you have. Sending every possible good thought and prayer your way. Take care...

    Lynda
  • Pam M
    Pam M Member Posts: 2,196
    #12
    Glad the Drugs are Working
    I had two of your chemo drugs, and recall the intense side effects. A nurse at my center told me "you know it's working when it's rough on you - if it trashes the normal cells, it's doing a real number on the cancerous ones". Hoping your tumors continue to fail to withstand the onslaught.

    Glad you're getting a chance to meet with a psychiatrist who has a specialty in Oncology. I am one of those people who refused to consider talking with a professional ("it's good for other people, but not for me"). Have to admit, I do think you're even more "messed up" if you refuse to see that asking for help is a huge part of the battle, and requires more strength than stubbornly refusing assistance. Let us know how it goes.

    Thank you for your prayers. It matters. I include you in mine.

    Totally horrible of me, but I had to grin at the "blistered troll" reference.
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #13
    Skiffin16 said:

    Mojo Mike...
    Mike, glad that you are feeling like crap....(if that is indeed a good sign the Tx is kicking cancer butt)....

    Sorry that's what it takes, but you know as well as any of us, the tougher the treatment, the harder it is for the cancer to survive...so hang in there and endure my friend....you are tougher.

    As for the depression, it's easy to have all of those emotions under the circumstances. Not being in the best physical shape to battle just adds to it.

    I'm sure the docs can get you headed in the right direction and get your cancer azz kickin boots laced up.

    Mojo Mike...cancer trembles when it hears that name....

    Best,
    John

    My prayers are with you
    Mike,
    Thank you for your post. Since David was diagnosed with Multiple Myeloma in addition to oropharyngeal cancer I have been depressed. I know we are going to fight, but not knowing how long he has and what his quality of life will be is so hard. I am glad you are going to see someone. That shows you are a very strong man. I want to say stay positive, but I know that is so much easier to say than do. I pray that you have better days coming. Stay in the game, fight the fight. You have come so far.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #14
    Pam M said:

    Glad the Drugs are Working
    I had two of your chemo drugs, and recall the intense side effects. A nurse at my center told me "you know it's working when it's rough on you - if it trashes the normal cells, it's doing a real number on the cancerous ones". Hoping your tumors continue to fail to withstand the onslaught.

    Glad you're getting a chance to meet with a psychiatrist who has a specialty in Oncology. I am one of those people who refused to consider talking with a professional ("it's good for other people, but not for me"). Have to admit, I do think you're even more "messed up" if you refuse to see that asking for help is a huge part of the battle, and requires more strength than stubbornly refusing assistance. Let us know how it goes.

    Thank you for your prayers. It matters. I include you in mine.

    Totally horrible of me, but I had to grin at the "blistered troll" reference.

    Hi Mike ...
    You might find this article good. Glad to hear from you and prayers sent up for you often.

    http://oralcancerfoundation.org/treatment/pdf/rash.pdf (sorry I can't make the link highlighted!!! )

    Best,

    Tim
  • hwt
    hwt Member Posts: 2,328 Member
    #15
    Tim6003 said:

    Hi Mike ...
    You might find this article good. Glad to hear from you and prayers sent up for you often.

    http://oralcancerfoundation.org/treatment/pdf/rash.pdf (sorry I can't make the link highlighted!!! )

    Best,

    Tim

    Mike
    I haven't been on site allot lately but saw your post and wanted to respond. My heart goes out to you and I admire you for recognizing the depression and the need to address it. It is something than can be helped. In every crisis there is a fear. Please follow through on getting help. In H&N terms it it treatable and curable so why wouldn't you! Put your worries aside today and enjoy this beautiful day to give thanks.

Discussion Boards