@mariah
Forum Replies Created
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- January 19, 2012 at 3:39 pm
Dear Anon,
In September of 2007, I was in your shoes. I also found this website early, and was amazed at how strong the caregivers were on this site. My husband was 38 when we found the mole (while camping…) and he advanced to stage four just this past June. The fear in the beginning was awful, but you will get used to a new "normal". You will not take a minute for granted. I lost my 31 year old brother on Dec 10 from a different type of cancer, so I know first hand what can happen if Dave takes a turn for the worst.
BUT…. Dave is still working and feeling OK despite doing daily Temodar, and I am still working, taking care of the kids, cleaning the house, scheduling docs appts, researching trials. We just got back from a 2 week vacation with the family. I can honestly say that I no longer remember a life without cancer. But keep one thing in mind… no matter what happens, you will be OK. Do not live in fear, and let cancer take a single moment from you. My husband hasn't, so why should I?
Post your questions, fears, bad news, and triumphs here. So many are going through the same thing as you, and we are all here to help. I remember those early, dark days, when it seemed all I would do is cry. This last June I re-visited those same feelings, but briefly. There is so much that cancer can take from us, but I WILL NOT GIVE IT TODAY!!
All my best to you and your husband,
Maria
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- January 19, 2012 at 3:39 pm
Dear Anon,
In September of 2007, I was in your shoes. I also found this website early, and was amazed at how strong the caregivers were on this site. My husband was 38 when we found the mole (while camping…) and he advanced to stage four just this past June. The fear in the beginning was awful, but you will get used to a new "normal". You will not take a minute for granted. I lost my 31 year old brother on Dec 10 from a different type of cancer, so I know first hand what can happen if Dave takes a turn for the worst.
BUT…. Dave is still working and feeling OK despite doing daily Temodar, and I am still working, taking care of the kids, cleaning the house, scheduling docs appts, researching trials. We just got back from a 2 week vacation with the family. I can honestly say that I no longer remember a life without cancer. But keep one thing in mind… no matter what happens, you will be OK. Do not live in fear, and let cancer take a single moment from you. My husband hasn't, so why should I?
Post your questions, fears, bad news, and triumphs here. So many are going through the same thing as you, and we are all here to help. I remember those early, dark days, when it seemed all I would do is cry. This last June I re-visited those same feelings, but briefly. There is so much that cancer can take from us, but I WILL NOT GIVE IT TODAY!!
All my best to you and your husband,
Maria
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- January 19, 2012 at 3:39 pm
Dear Anon,
In September of 2007, I was in your shoes. I also found this website early, and was amazed at how strong the caregivers were on this site. My husband was 38 when we found the mole (while camping…) and he advanced to stage four just this past June. The fear in the beginning was awful, but you will get used to a new "normal". You will not take a minute for granted. I lost my 31 year old brother on Dec 10 from a different type of cancer, so I know first hand what can happen if Dave takes a turn for the worst.
BUT…. Dave is still working and feeling OK despite doing daily Temodar, and I am still working, taking care of the kids, cleaning the house, scheduling docs appts, researching trials. We just got back from a 2 week vacation with the family. I can honestly say that I no longer remember a life without cancer. But keep one thing in mind… no matter what happens, you will be OK. Do not live in fear, and let cancer take a single moment from you. My husband hasn't, so why should I?
Post your questions, fears, bad news, and triumphs here. So many are going through the same thing as you, and we are all here to help. I remember those early, dark days, when it seemed all I would do is cry. This last June I re-visited those same feelings, but briefly. There is so much that cancer can take from us, but I WILL NOT GIVE IT TODAY!!
All my best to you and your husband,
Maria
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- January 3, 2012 at 11:51 am
This makes me wonder about my husband's sudden craving of oranges. He's doing Temodar. Maybe it's his body telling him something?
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- January 3, 2012 at 11:59 am
And by the way, since I can't create a topic (according to MPIP, I am "spam"), I haven't been able to update on him. As of last week, the Temodar has kept him stable – no new growth. While we were hoping for reduction, we'll take it. See the onc tomorrow to see if he will continue on the Tem or move to a clinical with anti-pd1 (doesn't qualify for Curetechs yet, stable disease) or Yervoy.
Sorry Jerry, didn't mean to hijack your post – my apologies. I'm just at my wits end with this. I contacted MRF, and they can't help. I just wish it was like the old way – especially because new patients were listed by the date they joined. Sometimes bigger isn't better.
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- January 3, 2012 at 11:59 am
And by the way, since I can't create a topic (according to MPIP, I am "spam"), I haven't been able to update on him. As of last week, the Temodar has kept him stable – no new growth. While we were hoping for reduction, we'll take it. See the onc tomorrow to see if he will continue on the Tem or move to a clinical with anti-pd1 (doesn't qualify for Curetechs yet, stable disease) or Yervoy.
Sorry Jerry, didn't mean to hijack your post – my apologies. I'm just at my wits end with this. I contacted MRF, and they can't help. I just wish it was like the old way – especially because new patients were listed by the date they joined. Sometimes bigger isn't better.
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- January 3, 2012 at 11:59 am
And by the way, since I can't create a topic (according to MPIP, I am "spam"), I haven't been able to update on him. As of last week, the Temodar has kept him stable – no new growth. While we were hoping for reduction, we'll take it. See the onc tomorrow to see if he will continue on the Tem or move to a clinical with anti-pd1 (doesn't qualify for Curetechs yet, stable disease) or Yervoy.
Sorry Jerry, didn't mean to hijack your post – my apologies. I'm just at my wits end with this. I contacted MRF, and they can't help. I just wish it was like the old way – especially because new patients were listed by the date they joined. Sometimes bigger isn't better.
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- January 19, 2012 at 3:44 pm
Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot. We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable? Or switch to IPI because he's off the steroids? Or try to get him into an anti-pd1 trial?
I wish we knew the results before he started.
I know how you feel, hugs to you…
Maria
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- January 19, 2012 at 3:44 pm
Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot. We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable? Or switch to IPI because he's off the steroids? Or try to get him into an anti-pd1 trial?
I wish we knew the results before he started.
I know how you feel, hugs to you…
Maria
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- January 19, 2012 at 3:44 pm
Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot. We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable? Or switch to IPI because he's off the steroids? Or try to get him into an anti-pd1 trial?
I wish we knew the results before he started.
I know how you feel, hugs to you…
Maria
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- January 17, 2012 at 6:05 pm
We just left Disney… took the kids. Moffitt was close. It was our “just in case” vacation. Hubby is doing temodar, so we mapped all the hospitals from Orlando to Buffalo, NY. Enjoy your trip and try not to think about mel…. relax and have fun 🙂 We did. -
- January 17, 2012 at 6:05 pm
We just left Disney… took the kids. Moffitt was close. It was our “just in case” vacation. Hubby is doing temodar, so we mapped all the hospitals from Orlando to Buffalo, NY. Enjoy your trip and try not to think about mel…. relax and have fun 🙂 We did. -
- January 17, 2012 at 6:05 pm
We just left Disney… took the kids. Moffitt was close. It was our “just in case” vacation. Hubby is doing temodar, so we mapped all the hospitals from Orlando to Buffalo, NY. Enjoy your trip and try not to think about mel…. relax and have fun 🙂 We did.
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