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Road bum

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Posts posted by Road bum

  1. Deb,

    I had one last Monday and got my results today.  I actually didn’t get to stressed out this time. Not sure exactly why but oh well I will take what I can get. Got my results today and they could have been better but, thank God, they weren’t any worse. I’m kind of where I was so no big change.

    If you can find another focal point or spend more time with your family it really helps. I have started researching everything under the sun that doesn’t have anything to do with “ my now “ and it’s been pretty interesting. Biggest deal is, it has helped to put “ now “ more behind me. It gives me a little breathing room and maybe it would work for you. Breathing room is a big deal with all of us. It is hard to find sometimes in our present situation

    So look for something that will take you “ outside “ of your own head for a while.

    It is a really nice feeling.

    Prayers for good news and relief from stress for you. We will all think good thoughts.

    Keep us posted.



  2. Isabelle, residents are always such experts, aren’t they?

    Hang in there, enjoy you family every minute you can. 
    And know that all of us are with you every step of the way 

    My wife and I will add our prayers for you to all the others and hope for many good days for you.


  3. Well I had the scan, I’ve seen the Doc and somehow I think I know less than I did before. 

    Hopefully someone can explain to me what exactly is meant by “ the tumor is basically the same size but it’s plumper” means.

    So anyway, I guess their hasn’t been much change so that’s a good thing ( I’ll get to that plumper thing later ). 
    Doc says she is going to talk to my radiation doc about the possibility of using SBRT.She isn’t sure if I can do that since I had a “ton” of targeted radiation on my first go round 2 years ago. This tumor being in the same spot might be a problem

    I guess the next witches brew that I am going to get is Gemzar. Not familiar with it at all so I’m hoping some of you can enlighten me a little.

    i need to find a little of my “bounce back”. Seems like it all went away.

    Now, on to that plumper thing that my Doc was talking about. I get a kick out of what she calls things when she is trying to explain something.

    Basically the Radiologist said the tumor was the same size as the scan done in July. However, it is mildly bulkier in areas. It went from 1.7 x 1.8 cm to 2.5 x 2.0 cm. Since July. Thus, it is plumper according to my Doc.

    So I need all you guys to get your diplomas out and get me back on the road with some decent directions. 
    I hate sitting on the side not knowing where I am.😳😳😉😂



  4. Linda, we all have been where you are right now. Some of us more than once. You can’t let it win without trying to beat it. 

    I have been diagnosed for three years now. Been through 3 different rounds of chemo and radiation and I’m still here.

    i will keep trying as long as I have breath. None of us know when they might find just the right combination of treatments that will get us a NED ( no evidence of disease).

    That is the goal around here. One day at a time and never give up. 

    We here are all behind you and will help in any way we can.

    Don't forget, you are never alone.


  5. Kristen, to be honest I haven’t checked the link you gave me except for a cursory glance.

    I am due for a cat scan on the 14 th and then I will see the Doc the following Monday. 

    I haven’t been on any chemo since August so we will see where we are a week from Monday. My Doctor has assured me that their are still a few options for treatment.

    i suppose it all hinges on what the scan shows.

    Thank you for thinking of me. I kind of left you all hanging after I asked you for help and I’m sorry.

    i did check on the clinical trail register and went thru it twice but I didn’t find anything I fit in.

    So right now I’m placing my bets on my Doctor. After that we will see.



  6. This is my signature line on my emails. I do believe and I do have hope.

    As the last line says “  Anything can be. “



    "Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be."


    —Shel Silverstein

  7. Feeling pretty good today. I actually got to sit on the back deck since the weather was so nice this morning. It was about 72 degrees with a nice breeze playing in the big trees. Very unusual for south Alabama in August, it reminded me of Wisconsin in late June. Perfect way to start your day.

    The only real problem I have right now is the neuropathy and I can handle it most of the time. When I can’t the pain meds can.

    Thank you all for your kind words of encouragement. They are much appreciated and much needed.

    Greatest bunch of folks I’ve ever known.


  8. Al

    Thank you Tom. I will definitely write that email and find out what they might do. I’m not sure I want to go all the way to MD. But it can be done.  

    I always said they would have to rope and drag me to the fire. I guess it’s time to find out what I’m made of.


  9. What exactly do you think when a Doctor starts talking about odd things?  Things like, “ maybe clinical trials”, or, “hospice “, or, “quality of life”, and others. 

    I know their is a possibility of clinical trials but I don’t want to up root my wife to travel somewhere for a treatment that might not work anyway. Not real sure I’m ready to be a test rat. 

    I have had chemo three times in the last three years. Carboplatin, cisplatin, taxol, Taxotere alimta, and Keytruda. I’m not sure I got them all but my brain is mush after all that. 

    I guess my question is where do I go from here?  Is their anything else that I can do?  I’m not looking for heroics but their ought to be something. 

    Thank you for your time and consideration.


  10. I can identify with all of you. I had a great sensitivity to any thing spicy. I couldn’t find any food that tasted right and my mouth was dry all the time. 

    Well the sensitivity to spices went away and my taste buds finally decided to let me enjoy food again but the dry mouth is still with me.

    You might try a product called Biotene. It is expressly for dry mouth. It will work for a while but you will have to use it pretty often.

    Hang in there and eventually it will all find its way back to some semblance of normal.



  11. Saw my Oncologist today and I’m a little down. 

    The essence of our conversation was the fact that I am out of options. Basically I have had all the chemo that I can have. This is where it gets a little hazy. I’m not sure she said no more at all or maybe some later. I’m going to give her a call tomorrow and clear that up.

    She has apparently already called The University of Alabama Birmingham Hospital about the possibility of some clinical trials they might be doing.  Right at the moment their are none that I would fit in. So she is going to do some more checking and I will also.

    She assures me that she is in this all the way with me which is comforting. I really trust her but at this point I am going to try to get a little more proactive for myself. 

    I guess I should be a little scared at this point. Somehow I’m not. I figure all I can do is try to help my Doc by maybe finding some other options. My spirits are good, my faith is strong. Every day is a good day and they all bring something new. It may be very small but my time looking for them is, in my mind, well spent. 

    If any of you folks can point me in the right direction to research some other avenues of treatment I would appreciate it.




  12. Isabelle, I know all about handling the stress and their is no delay in my medication. This was a planned rest period from the chemo.

    My initial question was about how long the chemo drugs will stay in my body. It’s been about 6 weeks since my last treatment and I am feeling a 100% better. I’ve got about another week before I see the Doc again and I’m sure she will give me more of the game plan then. 

    My hobbies have kept me from going nuts. Some of them I can’t do because of the shake and neuropathy in my hands but I’ve found others that don’t require real fine motor skills so I’m doing pretty good again.

    Thank you for your well wishes and I will send some right back to you.


  13. Terri L,  I have been on the roller coaster for 3 yrs. After the surgery, radiation, and chemo I had NED for a little over 8 months and then it was back.

    My Doc put me on another round of different chemo drugs and Keytruda even though I had no markers for it. At the end of 4 treatments with the chemo and Keytruda and then 4 treatments of Keytruda alone my tumor had tripled in size.

    Needless to say I was terrified. 

    Then I underwent 6 treatments of  Taxotere and steroids. The Taxotere was no fun but it did result in a .6 shrinkage in my tumor. 

    I am now on a rest period because of the toxicity of the Taxotere and to give my body a chance to shake off the side effects. 

    What comes next, I will find out in about two weeks. I have decided that I have spent all the time in terror that I am going to. No more laying awake all night or stressing over things. If I have questions, like you, I try to find answers. Apart from that I don’t worry very much. 

    Stress is not good for any of us so try and relax, and I know that is tough to do, but try.

    Don't ever be afraid to ask questions. We have all been where you are and we will try to help in any way we can. Keep us up to date.

    Keep your head up and keep looking forward.



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