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ipi – between 2nd & 3rd dose

Forums General Melanoma Community ipi – between 2nd & 3rd dose

  • Post
    TracyLee
    Participant

      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

    Viewing 15 reply threads
    • Replies
        Carol Taylor
        Participant

          Just inspired by you friend:

          http://www.facebook.com/note.php?created&&note_id=157438030992255

          Prayers.

          Lord, in Your mercy. Amen

          Grace and peace,

          Carol

          Carol Taylor
          Participant

            Just inspired by you friend:

            http://www.facebook.com/note.php?created&&note_id=157438030992255

            Prayers.

            Lord, in Your mercy. Amen

            Grace and peace,

            Carol

              Lisa13
              Participant

                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

                Lisa13
                Participant

                  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

                TracyLee
                Participant

                  Thank you Carol and Lisa.

                  I'm being such a sloppy cry baby today! Ugh. Not my best day, by far.

                  TracyLee

                  TracyLee
                  Participant

                    Thank you Carol and Lisa.

                    I'm being such a sloppy cry baby today! Ugh. Not my best day, by far.

                    TracyLee

                      Carol Taylor
                      Participant

                        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!

                        Carol Taylor
                        Participant

                          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!

                          lhaley
                          Participant

                            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

                            lhaley
                            Participant

                              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

                            Teodora
                            Guest

                              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

                              Teodora
                              Guest

                                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

                                killmel
                                Participant

                                  Hi TracyLee

                                   

                                  I do not have experience with IPI but I read all the post.

                                  If I remember correctly Valin in Cnada was on IPI & had a similar issue.

                                  Maybe you could post the question specifically to Valin.

                                  Good Luck & try not to worry

                                  killmel
                                  Participant

                                    Hi TracyLee

                                     

                                    I do not have experience with IPI but I read all the post.

                                    If I remember correctly Valin in Cnada was on IPI & had a similar issue.

                                    Maybe you could post the question specifically to Valin.

                                    Good Luck & try not to worry

                                    nicoli
                                    Participant

                                      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

                                      nicoli
                                      Participant

                                        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

                                          MaryBeth and Jeff
                                          Participant

                                            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)

                                            MaryBeth and Jeff
                                            Participant

                                              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)

                                            MaryBeth and Jeff
                                            Participant

                                              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

                                              MaryBeth and Jeff
                                              Participant

                                                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

                                                cfw43716
                                                Participant

                                                  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

                                                  cfw43716
                                                  Participant

                                                    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

                                                    Lauradunc
                                                    Participant

                                                      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

                                                      Lauradunc
                                                      Participant

                                                        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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