› Forums › General Melanoma Community › Three down, one to go
- This topic has 8 replies, 4 voices, and was last updated 14 years, 6 months ago by
Dynasysman.
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- July 8, 2011 at 9:03 pm
I had my 3rd Ipi infusion yesterday. I posted about it when I came home, the computer ate my post, then I went to bed.
I had my 3rd Ipi infusion yesterday. I posted about it when I came home, the computer ate my post, then I went to bed.
I've shared my stomach issues (and I did mention to Dr. Wolchuk that some docs are prescribing Immodium for on-going issues, and he said that it's in the physician instrustructions that they all recieve that Immodium should only be used 2 or three times and if it continues to go onto the Entocort. It's so weird being on a drug that's so new that not all the docs treat the side-effects the same way–even if they're in the same hospital.)
I now have a mean Ipi rash on my torso. First you can barely see it, but once I start scratching, it's huge. They prescribed something like Kenalog creme; doesn't do much & can only be used 2x/day. The rest of the day I use Eucerine, Sarna, etc. I was taking Zyrtec & Benedryl, but can only take 2 benedryl at night. Today I told them it's getting worse so they prescribed a stronger antihystimine. I gotta tell you, being on Ipi sure gets my phone calls returned fast. They practically want to know if I sneeze twice in a row!
ANYWAY, when he saw the rash, Dr. W was so happy! He said it looks like I'm definately responding and he's also excited about the white that's running all throughout the melanoma itself (it's on my temple/upper cheek). He said that he hopes it will start flaking off soon. From his mouth to G-d's ears! Even between my first & second infusions, it was starting to spread again, and it's been stable (at least visibly) since the second infusion. The radiation had initially stopped the spread, but that didn't last long. But it did buy me some time from when the Ipi was approved until it was actually available non-trial use, so I guess it did serve some purpose.
I was excited to get my appointment for 3 weeks and a PET scan app't for 3 weeks after that.
Boy have my priorities changed. My husband has liver disease, and now I pray that both of us will be alive to hold our grandchildren. My kids (21 & 23) know how much I adore babies/children and they've always teased me that maybe I don't want them to wait to get married so I can be a grandma. (I do.) I always took it for granted that I would see my children get married and have children of their own. I WILL BEAT THIS.
Have a good weekend, everyone.
karen
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- July 8, 2011 at 9:21 pm
Your news is great Karen!! Any chance you can take a soaking bath in Alveeno? I think that's what it's called. Basically an oatmeal bath that they use when you have chicken pox. Glad your having evidence of it working!! That will help to carry you through.
When I talked to my Dr about going on Ipi the other day he told me that I would have to call him for every little thing and it would be his job to decide if it was important or not.
Linda
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- July 8, 2011 at 9:21 pm
Your news is great Karen!! Any chance you can take a soaking bath in Alveeno? I think that's what it's called. Basically an oatmeal bath that they use when you have chicken pox. Glad your having evidence of it working!! That will help to carry you through.
When I talked to my Dr about going on Ipi the other day he told me that I would have to call him for every little thing and it would be his job to decide if it was important or not.
Linda
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- July 8, 2011 at 10:10 pm
Yes you WILL Karen! And you're gonna spoil those grandbabies rotten too! I'm pulling and praying for…and, yea! on the good news!
I'm sure not where you are in this, but it does change priorities, doesn't it?
(BTW, I've got an 18 month cutie myself! You'll love grannyhood!)
Lord, keep Your mercies new each morning for karen please. Thank You God. Amen!
Grace and peace to you,
Carol
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- July 8, 2011 at 10:10 pm
Yes you WILL Karen! And you're gonna spoil those grandbabies rotten too! I'm pulling and praying for…and, yea! on the good news!
I'm sure not where you are in this, but it does change priorities, doesn't it?
(BTW, I've got an 18 month cutie myself! You'll love grannyhood!)
Lord, keep Your mercies new each morning for karen please. Thank You God. Amen!
Grace and peace to you,
Carol
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- July 10, 2011 at 5:59 am
I feel your pain and share your determination to see my kids wed and play with my grandchildren. My daughters are 25 and 21. I always assumed I would be part of their lives for years, walk them down the aisles and give toasts at their weddings, play with my grandkids, etc.
As I come to grips with the idea that melanoma will be with me for the rest of my days and that I am unlikely to live as long as my father (would need 27 more years) or even my mother (20 years), this is the hardest issue for me to fathom. Thinking about it seriously brings tears to my eyes, and simply shuts me down. It is the one thing that above all makes me want to fight like Hell.
You go, woman! Ride the ipi for all it's worth and fight like there's no way out! Too much of what makes life sweetest depends on it.
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- July 10, 2011 at 5:59 am
I feel your pain and share your determination to see my kids wed and play with my grandchildren. My daughters are 25 and 21. I always assumed I would be part of their lives for years, walk them down the aisles and give toasts at their weddings, play with my grandkids, etc.
As I come to grips with the idea that melanoma will be with me for the rest of my days and that I am unlikely to live as long as my father (would need 27 more years) or even my mother (20 years), this is the hardest issue for me to fathom. Thinking about it seriously brings tears to my eyes, and simply shuts me down. It is the one thing that above all makes me want to fight like Hell.
You go, woman! Ride the ipi for all it's worth and fight like there's no way out! Too much of what makes life sweetest depends on it.
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