Freakishly well...
I haven't posted in a while because I have been waiting for hard to hit. Well, hard hasn't hit yet. Mark is doing freakishly well with his treatments. Several weeks ago he was switched from cisplatin to carbo-tax, which has had very little side effects.
Mark goes through his days pretty much like always with some slight variations, like being radiated every day, soaking his teeth in floride, flushing his stomach tube, and keeping his pill bottles straight. Otherwise, he is eating completely by mouth, maintaining his weight, going to the gym (we took a 5 mile walk last week), going to work, going to the mountains last weekend, and the beach this weekend. His biggest complaints are: NO TASTE, stiff jaw, dry mouth. Pain is minimal (a 2 on the 1 to 10 scale)
He has 8 rads left and 2 chemos. Radiologist doesn't think it will get any worse than this for him.
I feel fortunate that he faired so well...yet fear if he isn't sick or beaten up the treatment hasn't worked hard enough. I have to trust his doctors, that they are giving the best they can. They want a success story too. Have I mentioned before how much I love his radiologist. Never makes you feel like there is another patient waiting, explains things very well, and coordinates with and consults with the other doctors the best.
My thoughts are with all of you and wanted to post to let newbies know there is a whole spectrum of how this can go. One prepares for the worst and hopes for the best.
Kim
Comments
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I am so glad everything is
I am so glad everything is going well!! I sure miss the east coast beaches..what beach are you going to this weekend? We JUST had our first few days of nice weather. We were at a Baseball tournament over the weekend and people were wearing their winter coats. I am always wearing a winter coat, but that's a whole other story...
Take care
Stacey0 -
Good is not Bad
Kimba,
My docs assured me that a rough ride doesn't mean the treatment's more effective. I told them that I heard someone say that, and I was really hoping they were just saying it to make themself feel better. Here's hoping the road stays somewhat smooth for you.0 -
LOL - Boy do I understand.....
Kim, I had to reply when I read that you were afraid the treatments weren't working. I had 2 days of cisplatin in 3 week cycles and was told by my oncolgist that the cisplatin was the "big guns" of chemo. He told me things were going to get a lot worse before they got better - wrong!! I never lost any hair, had mild nausea for 2 or 3 days after treatments and fatigue, although I think a lot of the fatigue was from the daily radiation treatments. I, too, was worried that things were not working the way they should be and asked him about it. He just smiled and reassured me that they definitely were working. He reminded me that when we first met I had almost no voice at all due to the size of the tumor on my larynx and after my first week of chemo I had my voice back completely.
I think it's natural for all of us to think this way if we aren't getting all of the horrible side effects. Instead of being grateful we spend our time worrying that it's not working ;-)
Happy to hear that Mark is tolerating this so well and I pray that it will continue this way through the rest of his treatments.
My best to both of you,
Glenna0 -
Lucky Dog !Pam M said:Good is not Bad
Kimba,
My docs assured me that a rough ride doesn't mean the treatment's more effective. I told them that I heard someone say that, and I was really hoping they were just saying it to make themself feel better. Here's hoping the road stays somewhat smooth for you.
Great to hear Mark (& you) are doing so well. Hopefully it continues and why not.
Scam0 -
Glad things are going well!Glenna M said:LOL - Boy do I understand.....
Kim, I had to reply when I read that you were afraid the treatments weren't working. I had 2 days of cisplatin in 3 week cycles and was told by my oncolgist that the cisplatin was the "big guns" of chemo. He told me things were going to get a lot worse before they got better - wrong!! I never lost any hair, had mild nausea for 2 or 3 days after treatments and fatigue, although I think a lot of the fatigue was from the daily radiation treatments. I, too, was worried that things were not working the way they should be and asked him about it. He just smiled and reassured me that they definitely were working. He reminded me that when we first met I had almost no voice at all due to the size of the tumor on my larynx and after my first week of chemo I had my voice back completely.
I think it's natural for all of us to think this way if we aren't getting all of the horrible side effects. Instead of being grateful we spend our time worrying that it's not working ;-)
Happy to hear that Mark is tolerating this so well and I pray that it will continue this way through the rest of his treatments.
My best to both of you,
Glenna
Hey Kim, I'm really glad things are going well for Mark. I wonder if going to the gym has something to do with it. I've been waiting till the end of the month; but maybe I should try to get back sooner. When I was feeling better I was a bit more active; but it's been so darn hot and muggy; that it makes more fatigue. Also, mental health may have a play. Mark has you as a strong beautiful warrior fighting beside him. So perhaps his mental state is a little stronger because of this. Who knows; I'm just glad he is doing well. I am getting better each day. Able to swallow water by mouth but I don't over do it; I think psychologically i am afraid to swallow sometimes do to the pain. One day at a time!!
Charles0 -
Great New's!Glenna M said:LOL - Boy do I understand.....
Kim, I had to reply when I read that you were afraid the treatments weren't working. I had 2 days of cisplatin in 3 week cycles and was told by my oncolgist that the cisplatin was the "big guns" of chemo. He told me things were going to get a lot worse before they got better - wrong!! I never lost any hair, had mild nausea for 2 or 3 days after treatments and fatigue, although I think a lot of the fatigue was from the daily radiation treatments. I, too, was worried that things were not working the way they should be and asked him about it. He just smiled and reassured me that they definitely were working. He reminded me that when we first met I had almost no voice at all due to the size of the tumor on my larynx and after my first week of chemo I had my voice back completely.
I think it's natural for all of us to think this way if we aren't getting all of the horrible side effects. Instead of being grateful we spend our time worrying that it's not working ;-)
Happy to hear that Mark is tolerating this so well and I pray that it will continue this way through the rest of his treatments.
My best to both of you,
Glenna
It is great to hear such wonderfull new's Kimba! This surely goe's to show how we all respond so differently to treatment. Only eight treatment's left & still eating without the
tube & maintaining his weight is such a plus. We all now how brutal treatment can be for most of us. My oncologist said I sailed through treatment also. Had to use my tube at the end & I did not have the energy Mark has. Good for him! Congratulation's to you both!0 -
Kim, I'm so glad he is doing
Kim, I'm so glad he is doing so well !!! I also wanted to tell you thanks for posting this as you are so right and all cancer patients need to know that, so THANK YOU!
God bless,
debbie0 -
Know how you feel
Kimba,
I know how you feel. I keep waiting for something bad to happen when my dad was going through treatment. Mark must be a lot like him. I sent you an email about the Chemo doctor and I am getting ready to post something.
The chemo doctor told my dad that one reason he has done so well is the support he has gotten and luck. I think that Mark is getting that same kind of support from you and a lot of luck.
Continue to take care of him and be there for him.
Kathy0 -
Beach!staceya said:I am so glad everything is
I am so glad everything is going well!! I sure miss the east coast beaches..what beach are you going to this weekend? We JUST had our first few days of nice weather. We were at a Baseball tournament over the weekend and people were wearing their winter coats. I am always wearing a winter coat, but that's a whole other story...
Take care
Stacey
Stacey,
We are going to Delaware. Lewes and Rehoboth!!! The ocean is restorative...to both of us.0 -
DifferentPumakitty said:Know how you feel
Kimba,
I know how you feel. I keep waiting for something bad to happen when my dad was going through treatment. Mark must be a lot like him. I sent you an email about the Chemo doctor and I am getting ready to post something.
The chemo doctor told my dad that one reason he has done so well is the support he has gotten and luck. I think that Mark is getting that same kind of support from you and a lot of luck.
Continue to take care of him and be there for him.
Kathy
See Kim, we told you all along..."everyone is Different". Each of us have similar yet different reactions and responces to treatemnt....glad Mark's was minimal in pain and discomfort.
I wouldn't be overly concerned with his lack of pain an reaction to the treatment. Believe me, no matter how well you tolerate it, it sucks, no way around it. It's like Marine Corps boot camp, unless you have actually went through it you can't really appreciate it.
Best,
John0 -
OutstandingSkiffin16 said:Different
See Kim, we told you all along..."everyone is Different". Each of us have similar yet different reactions and responces to treatemnt....glad Mark's was minimal in pain and discomfort.
I wouldn't be overly concerned with his lack of pain an reaction to the treatment. Believe me, no matter how well you tolerate it, it sucks, no way around it. It's like Marine Corps boot camp, unless you have actually went through it you can't really appreciate it.
Best,
John
Kim, Outstanding news from you and Mark. I hope the rest of the road continues to be the same.
John : ) about Boot Camp0 -
Yes-Skiffin16 said:Semper Fi
Semper Fi brother.... LOL.
It is great to hear of how Mark is doing, Kim. My hopes and Prayers that this continues.
You make a very good point that everyone getting started, or into treatment, should take note of: every body deals with treatment to a significant degree differently. This is to say that there are, and will be, many who do not experience the extreme side-effects that others do, and nobody should assume going-in that they will. We hope that the C medical community is constantly advancing, and the extreme cases will become fewer and fewer, and I'm sure that's the case. Still, people getting started do have to prepare, as you know- it's just that nobody should get weighed-down by the worst-case possibilities that they may not experience. Everyone has to stay in the Positive, like you and Mark have.
Believe
kcass0 -
Great newsKent Cass said:Yes-
It is great to hear of how Mark is doing, Kim. My hopes and Prayers that this continues.
You make a very good point that everyone getting started, or into treatment, should take note of: every body deals with treatment to a significant degree differently. This is to say that there are, and will be, many who do not experience the extreme side-effects that others do, and nobody should assume going-in that they will. We hope that the C medical community is constantly advancing, and the extreme cases will become fewer and fewer, and I'm sure that's the case. Still, people getting started do have to prepare, as you know- it's just that nobody should get weighed-down by the worst-case possibilities that they may not experience. Everyone has to stay in the Positive, like you and Mark have.
Believe
kcass
Excellent to hear Kim and Mark. Glad to hear things are going so well for you! Here's hoping that it continues.
Cheers,
Jim0 -
"Newbies"Kent Cass said:Yes-
It is great to hear of how Mark is doing, Kim. My hopes and Prayers that this continues.
You make a very good point that everyone getting started, or into treatment, should take note of: every body deals with treatment to a significant degree differently. This is to say that there are, and will be, many who do not experience the extreme side-effects that others do, and nobody should assume going-in that they will. We hope that the C medical community is constantly advancing, and the extreme cases will become fewer and fewer, and I'm sure that's the case. Still, people getting started do have to prepare, as you know- it's just that nobody should get weighed-down by the worst-case possibilities that they may not experience. Everyone has to stay in the Positive, like you and Mark have.
Believe
kcass
You're right, Kent, a lot of "newbies" come here scared out of their minds after hearing and reading about possible side effects. I know I did until I started reading posts from others who were having few or mild side effects while undergoing the same treatment I was. I seriously thought the chemo wasn't working because I didn't lose any of my hair and I thought the radiation wasn't working because I wasn't experiencing any of the pain that others were. It is good for everyone to read posts such as this so they will understand that everyone reacts differently.
Maybe we should start a new forum - Side Effects - everyone could list their treatments and "chemo cocktail" and how their bodies reacted. LOL - I know this would be impossible as there would be so many postings that it would take forever to read them all. Anything that could help newcomers relax would be a blessing.
Hoping everyone is doing great today,
Glenna0 -
Kim & Mark - AwesomeGlenna M said:"Newbies"
You're right, Kent, a lot of "newbies" come here scared out of their minds after hearing and reading about possible side effects. I know I did until I started reading posts from others who were having few or mild side effects while undergoing the same treatment I was. I seriously thought the chemo wasn't working because I didn't lose any of my hair and I thought the radiation wasn't working because I wasn't experiencing any of the pain that others were. It is good for everyone to read posts such as this so they will understand that everyone reacts differently.
Maybe we should start a new forum - Side Effects - everyone could list their treatments and "chemo cocktail" and how their bodies reacted. LOL - I know this would be impossible as there would be so many postings that it would take forever to read them all. Anything that could help newcomers relax would be a blessing.
Hoping everyone is doing great today,
Glenna
So glad to hear you both are doing well! Keep it up.
Greg0 -
NewbiesGlenna M said:"Newbies"
You're right, Kent, a lot of "newbies" come here scared out of their minds after hearing and reading about possible side effects. I know I did until I started reading posts from others who were having few or mild side effects while undergoing the same treatment I was. I seriously thought the chemo wasn't working because I didn't lose any of my hair and I thought the radiation wasn't working because I wasn't experiencing any of the pain that others were. It is good for everyone to read posts such as this so they will understand that everyone reacts differently.
Maybe we should start a new forum - Side Effects - everyone could list their treatments and "chemo cocktail" and how their bodies reacted. LOL - I know this would be impossible as there would be so many postings that it would take forever to read them all. Anything that could help newcomers relax would be a blessing.
Hoping everyone is doing great today,
Glenna
Glenna, As a "newbie" who did come here scared to death, just having all of these different forums on hear to read have indeed been a great help. And I have discovered from reading the different ones I learned what I could expect or not. I was able to find out some have virtually no side effects to those with major ones. But I learned some of the things I was experiencing were normal and that was so great for me. I would have been lost without this place. Unfortunately I did have some major side effects bad they are decreasing daily and I am starting to feel much better. I finally gave up the blanket and the couch Monday and was able to shower without sitting down yesterday. One day at a time but it's posting like these that give me hope. I would encourage all of the other "newbies" to do what I did and just start reading the different forums. You can find answers and if not ask your own questions..I did...and someone will ALWAYS answers.
Very grateful for everyone here.
Debbie0 -
Debbielady4darknight said:Newbies
Glenna, As a "newbie" who did come here scared to death, just having all of these different forums on hear to read have indeed been a great help. And I have discovered from reading the different ones I learned what I could expect or not. I was able to find out some have virtually no side effects to those with major ones. But I learned some of the things I was experiencing were normal and that was so great for me. I would have been lost without this place. Unfortunately I did have some major side effects bad they are decreasing daily and I am starting to feel much better. I finally gave up the blanket and the couch Monday and was able to shower without sitting down yesterday. One day at a time but it's posting like these that give me hope. I would encourage all of the other "newbies" to do what I did and just start reading the different forums. You can find answers and if not ask your own questions..I did...and someone will ALWAYS answers.
Very grateful for everyone here.
Debbie
Your right, these forums are very informative for anyone just starting treatment. I received more information from everyone here than I did from my doctors, and my doctors were great.
I'm happy to hear that you are slowly improving - just giving up the blanket and getting off the couch is a major step. I know I spent a lot of time curled up with a blanket during treatment and I went through my treatments in June, July and August of last year. Not a time of year you expect to need a blanket ;-)
Take care and I hope you continue to improve,
Glenna0
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