› Forums › General Melanoma Community › ipi – between 2nd & 3rd dose
- This topic has 24 replies, 10 voices, and was last updated 14 years, 5 months ago by
Lauradunc.
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- June 28, 2011 at 5:53 pm
Hi Y'all,
About 1.5 weeks since my second ipi transfusion.
I'm suddenly seeing painful, swollen nodes on the "good" side.
Anyone else experienced anything similar? I have been trying to cheerlead myself that it is just ipi doing it's slash/kill of cancer cells, but I'm a bit down right this minute.
TracyLee
Hi Y'all,
About 1.5 weeks since my second ipi transfusion.
I'm suddenly seeing painful, swollen nodes on the "good" side.
Anyone else experienced anything similar? I have been trying to cheerlead myself that it is just ipi doing it's slash/kill of cancer cells, but I'm a bit down right this minute.
TracyLee
- Replies
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- June 28, 2011 at 6:15 pm
Just inspired by you friend:
http://www.facebook.com/note.php?created&¬e_id=157438030992255
Prayers.
Lord, in Your mercy. Amen
Grace and peace,
Carol
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- June 28, 2011 at 6:15 pm
Just inspired by you friend:
http://www.facebook.com/note.php?created&¬e_id=157438030992255
Prayers.
Lord, in Your mercy. Amen
Grace and peace,
Carol
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- June 28, 2011 at 6:27 pm
I have no experience with ipi, but I truly hope this is working for you. Lymph nodes react to an immune response, so this could very well be your body fighting off the melanoma. I know it's so easy to worry and wonder "what if", but I hope and pray this is the magic bullet for you.
Lisa – Stage 4 lung mets
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- June 28, 2011 at 6:27 pm
I have no experience with ipi, but I truly hope this is working for you. Lymph nodes react to an immune response, so this could very well be your body fighting off the melanoma. I know it's so easy to worry and wonder "what if", but I hope and pray this is the magic bullet for you.
Lisa – Stage 4 lung mets
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- June 28, 2011 at 7:03 pm
Thank you Carol and Lisa.
I'm being such a sloppy cry baby today! Ugh. Not my best day, by far.
TracyLee
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- June 28, 2011 at 7:20 pm
Now, now, darlin', we'll have none of that! (handing you a virtual hanky).
We all have these days! You cry and let it out, it's good for you. You're dealing with a lot and you sure don't need me to tell you that…just commiserating. Tell your kids to clean the house and hubby to take you out for supper and you'll feel better in no time :).
Praying for a better day tomorrow, and heck, since the day ain't over…praying for a better rest of the day and a great night!
Onward fearless leader!
Grace and peace,
Carol…BTW, you must be feeling better to crack a pain joke!
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- June 28, 2011 at 7:20 pm
Now, now, darlin', we'll have none of that! (handing you a virtual hanky).
We all have these days! You cry and let it out, it's good for you. You're dealing with a lot and you sure don't need me to tell you that…just commiserating. Tell your kids to clean the house and hubby to take you out for supper and you'll feel better in no time :).
Praying for a better day tomorrow, and heck, since the day ain't over…praying for a better rest of the day and a great night!
Onward fearless leader!
Grace and peace,
Carol…BTW, you must be feeling better to crack a pain joke!
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- June 28, 2011 at 8:15 pm
TracyLee,
It's ok to get down!! Have you talked to Dr Scharfman to get his opinion? At this point you might want to talk to him and not your local onc who has no experience with the drug.
Understand your being scared. Right before I went to my radiation appointment today I felt another lump surface.
Call and take a ride to Baltimore. If he feels this is a normal response then you will deal with it. If he feels that this is not normal then it's time to look into your next option.
Sending cyber hugs,
Linda
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- June 28, 2011 at 8:15 pm
TracyLee,
It's ok to get down!! Have you talked to Dr Scharfman to get his opinion? At this point you might want to talk to him and not your local onc who has no experience with the drug.
Understand your being scared. Right before I went to my radiation appointment today I felt another lump surface.
Call and take a ride to Baltimore. If he feels this is a normal response then you will deal with it. If he feels that this is not normal then it's time to look into your next option.
Sending cyber hugs,
Linda
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- June 28, 2011 at 7:51 pm
Hi Tracy,
I have no experience with Ipi, but from the many postings I've read here,but the way Ipi works seem to work is, it makes melanoma worst before making it better, basicaly/could take 6-12 weeks for any results to be evident/.So do not despair.Everything will be fine.I hope you will have a good response to this treatment.
As for being a cry baby, I am one every day/currenly radiation/,I feel tired a lot; but then somehow I picck myself up and dust myself off, and keep living my life.
Stay strong.Be stubborn.You can do this.
Teodora
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- June 28, 2011 at 7:51 pm
Hi Tracy,
I have no experience with Ipi, but from the many postings I've read here,but the way Ipi works seem to work is, it makes melanoma worst before making it better, basicaly/could take 6-12 weeks for any results to be evident/.So do not despair.Everything will be fine.I hope you will have a good response to this treatment.
As for being a cry baby, I am one every day/currenly radiation/,I feel tired a lot; but then somehow I picck myself up and dust myself off, and keep living my life.
Stay strong.Be stubborn.You can do this.
Teodora
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- June 28, 2011 at 9:35 pm
Praying for you Tracy,
What has the specialist said? You haven't asked?… tsk, tsk. Get him on the phone asap.
Don't worry about being a cry baby. It's normal to worry about this beast. You would be dumb NOT to worry. Use this board to unload but remember that there is only ONE who can make a difference.
Nicki, Stage 3b
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- June 28, 2011 at 9:35 pm
Praying for you Tracy,
What has the specialist said? You haven't asked?… tsk, tsk. Get him on the phone asap.
Don't worry about being a cry baby. It's normal to worry about this beast. You would be dumb NOT to worry. Use this board to unload but remember that there is only ONE who can make a difference.
Nicki, Stage 3b
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- June 29, 2011 at 3:24 am
Tra5555 began to develop tomknmsdjnxTracy
Yes!! My husband had 3rd dose of ipi last week. And between dose 2 and 3 developed various "lumps". A few are sore but he says they do not stay sore. The Doc said they are probably (his words) pieces of melanoma that have broken off and have stopped and taken up residence wherever the lump is. This is not necessarily a "bad" thing. (for a lack of a better way of putting it). Doc did not seem concerned. Other then one hard lump located near is spine and the base of his neck. He is to have an MRI on this one in 3 weeks. This is indeed a documented occurence as a result of the ipi. I too believe that its the ipi "ripping the mel to shreds". I have been reading your posts as it appears that you and my husband are very close in your treatment time frames and experiencing similiar side effects. Research/trials have shown that with ipi, the mel 'may' worsen before it gets better.. My prayers are with you Dear Tracy.
MaryBeth – (wife of Jeff…Stage 4)
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- June 29, 2011 at 3:24 am
Tra5555 began to develop tomknmsdjnxTracy
Yes!! My husband had 3rd dose of ipi last week. And between dose 2 and 3 developed various "lumps". A few are sore but he says they do not stay sore. The Doc said they are probably (his words) pieces of melanoma that have broken off and have stopped and taken up residence wherever the lump is. This is not necessarily a "bad" thing. (for a lack of a better way of putting it). Doc did not seem concerned. Other then one hard lump located near is spine and the base of his neck. He is to have an MRI on this one in 3 weeks. This is indeed a documented occurence as a result of the ipi. I too believe that its the ipi "ripping the mel to shreds". I have been reading your posts as it appears that you and my husband are very close in your treatment time frames and experiencing similiar side effects. Research/trials have shown that with ipi, the mel 'may' worsen before it gets better.. My prayers are with you Dear Tracy.
MaryBeth – (wife of Jeff…Stage 4)
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- June 29, 2011 at 3:26 am
Yes!! My husband had 3rd dose of ipi last week. And between dose 2 and 3 developed various "lumps". A few are sore but he says they do not stay sore. The Doc said they are probably (his words) pieces of melanoma that have broken off and have stopped and taken up residence wherever the lump is. This is not necessarily a "bad" thing. (for a lack of a better way of putting it). Doc did not seem concerned. Other then one hard lump located near is spine and the base of his neck. He is to have an MRI on this one in 3 weeks. This is indeed a documented occurence as a result of the ipi. I too believe that its the ipi "ripping the mel to shreds". I have been reading your posts as it appears that you and my husband are very close in your treatment time frames and experiencing similiar side effects. Research/trials have shown that with ipi, the mel 'may' worsen before it gets better.. My prayers are with you Dear Tracy.
MaryBeth – (wife of Jeff…Stage 4
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- June 29, 2011 at 3:26 am
Yes!! My husband had 3rd dose of ipi last week. And between dose 2 and 3 developed various "lumps". A few are sore but he says they do not stay sore. The Doc said they are probably (his words) pieces of melanoma that have broken off and have stopped and taken up residence wherever the lump is. This is not necessarily a "bad" thing. (for a lack of a better way of putting it). Doc did not seem concerned. Other then one hard lump located near is spine and the base of his neck. He is to have an MRI on this one in 3 weeks. This is indeed a documented occurence as a result of the ipi. I too believe that its the ipi "ripping the mel to shreds". I have been reading your posts as it appears that you and my husband are very close in your treatment time frames and experiencing similiar side effects. Research/trials have shown that with ipi, the mel 'may' worsen before it gets better.. My prayers are with you Dear Tracy.
MaryBeth – (wife of Jeff…Stage 4
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- June 29, 2011 at 7:42 pm
Tracy Lee, You are not alone, I have had 3 doses of IPI and 4 days after my 1st does I had swollen node next to my right breast, since then I have aquired numerous bumps with bruising. I have had 3 doses and since then I swear that one of my lumps is becoming softer, not as marble like…..I am praying so. I truly understand your panic, this seems normal as far as I know, whatever is normal according to this disease, our lives have now changed, but I thank the Lord everyday that the IPI is available to us to try first, seems to have had the best, long lasting responce for those that do respond and I pray it works for all of us that are on it now. Keep the faith baby, sometimes easier said then done. We just need to continue to communicate on what reactions we are getting and what is going on, I honestly believe this treatment seems so new that the doctors are not ever sure what to expect, at least that is my impression………Ask the Lord to carry your burden and he will be there , works for me every time. Take care and love and blessing. Kitty
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- June 29, 2011 at 7:42 pm
Tracy Lee, You are not alone, I have had 3 doses of IPI and 4 days after my 1st does I had swollen node next to my right breast, since then I have aquired numerous bumps with bruising. I have had 3 doses and since then I swear that one of my lumps is becoming softer, not as marble like…..I am praying so. I truly understand your panic, this seems normal as far as I know, whatever is normal according to this disease, our lives have now changed, but I thank the Lord everyday that the IPI is available to us to try first, seems to have had the best, long lasting responce for those that do respond and I pray it works for all of us that are on it now. Keep the faith baby, sometimes easier said then done. We just need to continue to communicate on what reactions we are getting and what is going on, I honestly believe this treatment seems so new that the doctors are not ever sure what to expect, at least that is my impression………Ask the Lord to carry your burden and he will be there , works for me every time. Take care and love and blessing. Kitty
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- June 30, 2011 at 4:47 am
TracyLee
My mom has had similar lumps show up. One showed up on a pet scan and we could definitely feel it, by the time she had her next scan it was gone. She has one now that felt very marble like but is too starting to feel softer…maybe it is dying? We are hoping and praying. She is on her second round of IPI. She had mixed response the first go at it. From what the doctors say that is pretty normal. She has her last infusion tomorrow and a scan the end of July. Praying for awesome results!
Keep up the faith. You have great verses…The Lord does care and he wants us to cast all our cares, anxiety, frustration etc on Him. Keep looking to Christ!
Praying,
Laura
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- June 30, 2011 at 4:47 am
TracyLee
My mom has had similar lumps show up. One showed up on a pet scan and we could definitely feel it, by the time she had her next scan it was gone. She has one now that felt very marble like but is too starting to feel softer…maybe it is dying? We are hoping and praying. She is on her second round of IPI. She had mixed response the first go at it. From what the doctors say that is pretty normal. She has her last infusion tomorrow and a scan the end of July. Praying for awesome results!
Keep up the faith. You have great verses…The Lord does care and he wants us to cast all our cares, anxiety, frustration etc on Him. Keep looking to Christ!
Praying,
Laura
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