› Forums › General Melanoma Community › bad scan and thank you everyone
- This topic has 14 replies, 6 voices, and was last updated 13 years, 8 months ago by
Tracey FL.
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- January 7, 2011 at 12:28 am
I really want to thank everyone for their letters. I read them to my mom and she felt better and encouraged. This has been such a helpfull tool. We felt that we had been beat, but not now!!!! The body scans were so bad that they took mom off chemo. We are looking at the ipi trials now. This will be her third trial and we will keep going. I will more than likely be going in for a back surgery myself ( fell and broke both my rods). I am scared but you guys are my heros and so is my mom. Keep the faith.
Tracey
I really want to thank everyone for their letters. I read them to my mom and she felt better and encouraged. This has been such a helpfull tool. We felt that we had been beat, but not now!!!! The body scans were so bad that they took mom off chemo. We are looking at the ipi trials now. This will be her third trial and we will keep going. I will more than likely be going in for a back surgery myself ( fell and broke both my rods). I am scared but you guys are my heros and so is my mom. Keep the faith.
Tracey
mom stage 1V with brain mets, lung, body.
P.S Mom looks great in her wig, younger. She sleeps in the terry turban at night very soft and keeps her head warm.
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- January 7, 2011 at 12:51 pm
Hi Tracey,
Sorry to hear about your Mom's recent bad scan. I just wanted to share with you my experience, as I think it's quite similar to your Mom's. I have brain and lung mets, and a few sub-qs. I did WBR in Oct 2009, helped marginally, followed by chemo (Temodar), which did absolutely nothing. As in your Mom's case, my Dr took me off the chemo. A couple more new mets showed up in the brain in April, so I went to Montreal for Gammaknife radiation surgery. That helped a bit to stablize them enough to allow me eligibility for the ipi trial. Meanwhile, I had learned that I was BRAF and C-KIT negative, but NRAS positive — no treatment for that yet, but I could be wrong. Anyway, I started the compasionate use trial for ipi, and although some people experience side effects, I have sailed through so far without a hitch. No side effects, and visible shrinkage in my sub-q tumors. I'm still waiting on the results of my Dec scan to see what's going on in the lung and brain, but given the results I'm seeing with the sub-qs, I'm hoping for a good report. I was diagnosed in March 2006, and I've done several trials and treatments with no luck, but ipi is the first time I could really see a difference. Tell your Mom her energy (and her hair) will come back, and she will soon start to feel a lot better. I hope she does try ipi and that it works for her as well as it has with me. Best of luck to her — and you!
Hugs
Sharyn, Stage IV
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- January 7, 2011 at 12:58 pm
Oops! Almost forgot! The terry turban is cozy, but it sometimes comes off from the friction against the pillow case. Pick up a satin pillow case, and she'll see quite a difference. I had a nice wig too, but I only wore it from Nov-June. After that it got too hot in the summer, and I had enough regrowth to sport a short cut. The centre of the top of the head and the bangs are difficult to fill in well, but after a year, it was filled in.
Hugs
Sharyn
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- January 7, 2011 at 12:58 pm
Oops! Almost forgot! The terry turban is cozy, but it sometimes comes off from the friction against the pillow case. Pick up a satin pillow case, and she'll see quite a difference. I had a nice wig too, but I only wore it from Nov-June. After that it got too hot in the summer, and I had enough regrowth to sport a short cut. The centre of the top of the head and the bangs are difficult to fill in well, but after a year, it was filled in.
Hugs
Sharyn
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- January 10, 2011 at 3:02 am
Sharyn, I really would like to keep intouch with you. Your response really helped mom. I just got back from the surgeon and he wants to do the wait and see approach to see if I will need surgery. I am not in to much pain now and he said maybe I can live with the broken rods in my back, a month would tell. I am glad because this would be a bad time for major back surgery. Sounds like you and mom have a lot of the same things going on. She has an apt on the 27th for the ipi consult. I really want to know what the ipi involves how long, how often and what is it (shots,drip).
She has 10 more days of WBR. What state do you live in? We are in FL.
Tracey
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- January 10, 2011 at 3:02 am
Sharyn, I really would like to keep intouch with you. Your response really helped mom. I just got back from the surgeon and he wants to do the wait and see approach to see if I will need surgery. I am not in to much pain now and he said maybe I can live with the broken rods in my back, a month would tell. I am glad because this would be a bad time for major back surgery. Sounds like you and mom have a lot of the same things going on. She has an apt on the 27th for the ipi consult. I really want to know what the ipi involves how long, how often and what is it (shots,drip).
She has 10 more days of WBR. What state do you live in? We are in FL.
Tracey
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- January 7, 2011 at 12:51 pm
Hi Tracey,
Sorry to hear about your Mom's recent bad scan. I just wanted to share with you my experience, as I think it's quite similar to your Mom's. I have brain and lung mets, and a few sub-qs. I did WBR in Oct 2009, helped marginally, followed by chemo (Temodar), which did absolutely nothing. As in your Mom's case, my Dr took me off the chemo. A couple more new mets showed up in the brain in April, so I went to Montreal for Gammaknife radiation surgery. That helped a bit to stablize them enough to allow me eligibility for the ipi trial. Meanwhile, I had learned that I was BRAF and C-KIT negative, but NRAS positive — no treatment for that yet, but I could be wrong. Anyway, I started the compasionate use trial for ipi, and although some people experience side effects, I have sailed through so far without a hitch. No side effects, and visible shrinkage in my sub-q tumors. I'm still waiting on the results of my Dec scan to see what's going on in the lung and brain, but given the results I'm seeing with the sub-qs, I'm hoping for a good report. I was diagnosed in March 2006, and I've done several trials and treatments with no luck, but ipi is the first time I could really see a difference. Tell your Mom her energy (and her hair) will come back, and she will soon start to feel a lot better. I hope she does try ipi and that it works for her as well as it has with me. Best of luck to her — and you!
Hugs
Sharyn, Stage IV
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- January 7, 2011 at 9:11 pm
Tracey,
I'm sorry to hear that your having back issues at the same time as being a caretaker for your mom. What an overload!! I hope your surgery is a success and you have a fairly quick recovery time. Sending prayers for your mom that she gets into the ippi compassionate care trial quickly and sees good results.
Best wishes,
Linda
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- January 7, 2011 at 9:11 pm
Tracey,
I'm sorry to hear that your having back issues at the same time as being a caretaker for your mom. What an overload!! I hope your surgery is a success and you have a fairly quick recovery time. Sending prayers for your mom that she gets into the ippi compassionate care trial quickly and sees good results.
Best wishes,
Linda
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