› Forums › General Melanoma Community › IPI started. Leg amputation being discussed again if IPI fails.
- This topic has 42 replies, 11 voices, and was last updated 13 years, 9 months ago by
Vermont_Donna.
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- December 2, 2010 at 11:42 pm
Hi everyone,
Hi everyone,
I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection…he said dont worry, this is what we are going to do….we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation….can you write to me and please tell me more about your specific situations??
Thanks so much for reading all of this (if you indeed made it this far!)
Vermont_Donna
stage 3a
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- December 2, 2010 at 11:56 pm
Donna,
I am so happy you posted. I thought about you all day yesterday.
How are you feeling??? Any IPI side effects???
Just focus on how great it will be that IPI is working for you & you will not have to deal with amputation.
Keep the faith & your shin up!
Hugs
Mary
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- December 2, 2010 at 11:56 pm
Donna,
I am so happy you posted. I thought about you all day yesterday.
How are you feeling??? Any IPI side effects???
Just focus on how great it will be that IPI is working for you & you will not have to deal with amputation.
Keep the faith & your shin up!
Hugs
Mary
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- December 3, 2010 at 1:32 am
Hi Donna,
I'm so happy that you've finally started ipi. I just had my 4th infusion, and I've had no side effects worth mentioning. I'm hoping the same for you.
Donna, I want you to think long and hard about this amputation business. When I was still IIIB and in the PV-10 trial, I asked Dr Agarwala about an amputation if PV-10 didn`t work. He said NEVER!!! He said that many doctors who are not melanoma specialists think that amputation is a viable option. But although the melanoma is presenting only in the leg, once in-transits appear, it is no longer a local disease per se, but microscopically systemic, even though there is not yet any evidence of it. He said that even if I had my leg amputated right to the hip, he could guarantee that a new tumour would appear in about 6 months. So I would have underrgone all that surgery, recovery, possible infection, not to mention a DRASTIC change in quality of life — all that for nothing! His advice was to do a systemic treatment, and with any luck it would kill off the microscopic systemic cells before they had a chance to do any damage. I googled `melanoma amputation`and found these sites for you. There are others.
http://www.ncbi.nlm.nih.gov/pubmed/2472674
http://www.springerlink.com/content/4xu7g03v171w6337/
http://www.ncbi.nlm.nih.gov/pubmed/15642433
Do read these, please, and seriously weight the pros and cons. Meanwhile, I`ll put all my prayers out there for ipi to work for you.
Hugs
Sharyn, Stage IV
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- December 3, 2010 at 1:32 am
Hi Donna,
I'm so happy that you've finally started ipi. I just had my 4th infusion, and I've had no side effects worth mentioning. I'm hoping the same for you.
Donna, I want you to think long and hard about this amputation business. When I was still IIIB and in the PV-10 trial, I asked Dr Agarwala about an amputation if PV-10 didn`t work. He said NEVER!!! He said that many doctors who are not melanoma specialists think that amputation is a viable option. But although the melanoma is presenting only in the leg, once in-transits appear, it is no longer a local disease per se, but microscopically systemic, even though there is not yet any evidence of it. He said that even if I had my leg amputated right to the hip, he could guarantee that a new tumour would appear in about 6 months. So I would have underrgone all that surgery, recovery, possible infection, not to mention a DRASTIC change in quality of life — all that for nothing! His advice was to do a systemic treatment, and with any luck it would kill off the microscopic systemic cells before they had a chance to do any damage. I googled `melanoma amputation`and found these sites for you. There are others.
http://www.ncbi.nlm.nih.gov/pubmed/2472674
http://www.springerlink.com/content/4xu7g03v171w6337/
http://www.ncbi.nlm.nih.gov/pubmed/15642433
Do read these, please, and seriously weight the pros and cons. Meanwhile, I`ll put all my prayers out there for ipi to work for you.
Hugs
Sharyn, Stage IV
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- December 3, 2010 at 4:15 am
Donna, I know you are having a terrible time right now. But I shiver when I hear the word amputation, it has been suggested to me by caring friends and family (hey, can't they cut off the melanoma by amputation). It doesn't work that way and my surgeon discussed that with me. When the melanoma re-appeared on the surface of my leg, 1st recurrence, he cut off a significant area of my skin – very deep – on my leg BUT it re-appeared not only in that area (thigh) but on the lower portion of my leg.
Please as Sharyn says, be careful with the discussion on amputation. I had serious infections on my leg which took many many months to heal..as the nurse who did most of the cleansing..she could see my bone. The vacuum Sharyn mentioned in previous e-mails is what solved my first recurrence healing, the second was solved by the wonderful 'head' of wound clinic at Royal Victoria Hospital in Montreal…Any possibility of your surgeon talking to him? I can give you his name, believe me, I know the surgeons 'bow' down to him.
I pray Ipi is the miracle you are looking for. I've also had my 4th round…the only side effect I have noticed lately is fatigue but not 'extreme'. Or as you oncologist suggests, if not IL-2. Val xx
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- December 3, 2010 at 4:15 am
Donna, I know you are having a terrible time right now. But I shiver when I hear the word amputation, it has been suggested to me by caring friends and family (hey, can't they cut off the melanoma by amputation). It doesn't work that way and my surgeon discussed that with me. When the melanoma re-appeared on the surface of my leg, 1st recurrence, he cut off a significant area of my skin – very deep – on my leg BUT it re-appeared not only in that area (thigh) but on the lower portion of my leg.
Please as Sharyn says, be careful with the discussion on amputation. I had serious infections on my leg which took many many months to heal..as the nurse who did most of the cleansing..she could see my bone. The vacuum Sharyn mentioned in previous e-mails is what solved my first recurrence healing, the second was solved by the wonderful 'head' of wound clinic at Royal Victoria Hospital in Montreal…Any possibility of your surgeon talking to him? I can give you his name, believe me, I know the surgeons 'bow' down to him.
I pray Ipi is the miracle you are looking for. I've also had my 4th round…the only side effect I have noticed lately is fatigue but not 'extreme'. Or as you oncologist suggests, if not IL-2. Val xx
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- December 3, 2010 at 3:33 am
My heart breaks for you as you deal with not only melanoma but the decision of amputation. I agree with the previous poster. Please think long and hard on the amputation issue. She is right. The melanoma could likely be floating around in your body and could appear later(hopefully not) so amputating your leg would only cause you more hardship. Try the Ipi and other options and also get a second opinion from another melanoma oncologist/surgeon. I pray you will find some peace during the next few days. Know that we are all thinking and praying for you and your decisions. Good luck with Ipi
Linda/Kentucky
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- December 3, 2010 at 3:33 am
My heart breaks for you as you deal with not only melanoma but the decision of amputation. I agree with the previous poster. Please think long and hard on the amputation issue. She is right. The melanoma could likely be floating around in your body and could appear later(hopefully not) so amputating your leg would only cause you more hardship. Try the Ipi and other options and also get a second opinion from another melanoma oncologist/surgeon. I pray you will find some peace during the next few days. Know that we are all thinking and praying for you and your decisions. Good luck with Ipi
Linda/Kentucky
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- December 3, 2010 at 11:03 am
Hi everyone,
Thanks so much for your thoughts! Thats what I have been thinking, that amputation is NOT the way to go as I do have in transit mets and I probably do have some floaters out there. I also worry that I would die from 1. the procedure itself, 2. in the post op period from infection and trauma to my body 3. in several months out from the procedure from the infection my stump would get from the end NEVER healing!!! Why should the stump heal? I have two wounds on my leg that are not healing very fast or at all now! So I would have to be in a very differetn place than I am right now.
I am thinking positive that the IPI will work! I have had no side effects so far. Val, I do want the name of your doctor in Montreal…but how would I, an American, be able to access a Canadian doctor? I also am going to ask for some other referral doctors, Mass General, Dana Farber, 2nd opinions on the course of melanoma treatment and on my leg wounds. I am starting an all out project on researching how to heal my leg. Val, I hear you and Sharyn on the wound vac treatment. I googled that…it sounds promising, so I am going to look into that. I have called my surgeon to ask him about all these other treatments, NOT to talk about amputation.
THANKS SO MUCH!!! Please anyone else with thougths, stories, what they did, PLEASE WRITE! This helps so much!
Hugs,
Vermont_Donna
stage 3a
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- December 3, 2010 at 2:34 pm
Donna, there are always backup plans for systemic treatment. I do hope that IPI works for you from the start, but if not, there is biochemotherapy and Interleukin 2, both require hospitalization at a major melanoma center and are fairly miserable, but there are always other options. Although living in Vermont requires travel to and from melanoma centers (I imagine,)in the long run it is worth it. The other place to look for clinical trials would be http://www.clinicaltrials.gov.
Best
John
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- December 3, 2010 at 2:34 pm
Donna, there are always backup plans for systemic treatment. I do hope that IPI works for you from the start, but if not, there is biochemotherapy and Interleukin 2, both require hospitalization at a major melanoma center and are fairly miserable, but there are always other options. Although living in Vermont requires travel to and from melanoma centers (I imagine,)in the long run it is worth it. The other place to look for clinical trials would be http://www.clinicaltrials.gov.
Best
John
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- December 3, 2010 at 2:38 pm
Here are some locations close to Vermont, for IPI
Dartmouth Hitchcock Medical Center Recruiting Lebanon, New Hampshire, United States, 03756 Contact: Marc Ernstoff, Site 044 603-650-5534 Dana-Farber Cancer Inst Recruiting Boston, Massachusetts, United States, 02115 Contact: Fstephen Hodi, Site 040 617-632-5053 Beth Israel Deaconess Medical Center, Inc. Recruiting Boston, Massachusetts, United States, 02215 Contact: F. Stephen Hodi, Site 40 617-667-1930 Massachusetts General Hospital Recruiting Boston, Massachusetts, United States, 02114 Contact: F. Stephen Hodi, Site 40 617-667-1930 -
- December 3, 2010 at 2:38 pm
Here are some locations close to Vermont, for IPI
Dartmouth Hitchcock Medical Center Recruiting Lebanon, New Hampshire, United States, 03756 Contact: Marc Ernstoff, Site 044 603-650-5534 Dana-Farber Cancer Inst Recruiting Boston, Massachusetts, United States, 02115 Contact: Fstephen Hodi, Site 040 617-632-5053 Beth Israel Deaconess Medical Center, Inc. Recruiting Boston, Massachusetts, United States, 02215 Contact: F. Stephen Hodi, Site 40 617-667-1930 Massachusetts General Hospital Recruiting Boston, Massachusetts, United States, 02114 Contact: F. Stephen Hodi, Site 40 617-667-1930 -
- December 4, 2010 at 10:29 pm
Hi John,
I do travel 88 miles one way to Dartmouth Hitchcock Medical Center (the Norris Cotton Cancer Center) but the good thing is thats not too far and I am from there so have lots of friends and family there. I am doing the Ipi trial there with Dr Marc Ernstoff…..hes GREAT!!! I love him!!! Thanks for the other info, just for second opinions, etc.
Vermont_Donna
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- December 4, 2010 at 10:29 pm
Hi John,
I do travel 88 miles one way to Dartmouth Hitchcock Medical Center (the Norris Cotton Cancer Center) but the good thing is thats not too far and I am from there so have lots of friends and family there. I am doing the Ipi trial there with Dr Marc Ernstoff…..hes GREAT!!! I love him!!! Thanks for the other info, just for second opinions, etc.
Vermont_Donna
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- December 3, 2010 at 5:34 pm
Hi Donna.
I did have the sponge vac the first time around and it was wonderful but the head of the wound clinic at the RVH nixed it second time round because there was the possibility that I did not have clear margins…and you with in transits would probably not be a good candidate for same reason. He is of the opinion that sponge vac could possibly spread melanoma if it is active. His name is Lincoln de Sousa at Royal Victoria Hospital..Doctors do speak to each other and perhaps your doctor could discuss your case with him..he is the best…actually I believe he is not a doctor, however he runs the wound clinic..everybody calls him Lincoln but all the doctors treat him with the greatest respect.
For the second surgery with my major problems with about 8 weeks of trying to heal, being seen by my surgeons who seemed to not be able to get it to heal…Lincoln came down and took one look at it, and changed the procedure. He said there was bacteria in the wound, requested that the nurses who were cleaning my wound daily start 'bactigras' for a few treatments to destroy bacteria and then 'silver cel'…at least that is the order I seem to recall (speak to your doctor)…my problem wound was healed very quickly with this treatment.
I like what John (JAG) has to say below.
All the best, Val
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- December 3, 2010 at 5:34 pm
Hi Donna.
I did have the sponge vac the first time around and it was wonderful but the head of the wound clinic at the RVH nixed it second time round because there was the possibility that I did not have clear margins…and you with in transits would probably not be a good candidate for same reason. He is of the opinion that sponge vac could possibly spread melanoma if it is active. His name is Lincoln de Sousa at Royal Victoria Hospital..Doctors do speak to each other and perhaps your doctor could discuss your case with him..he is the best…actually I believe he is not a doctor, however he runs the wound clinic..everybody calls him Lincoln but all the doctors treat him with the greatest respect.
For the second surgery with my major problems with about 8 weeks of trying to heal, being seen by my surgeons who seemed to not be able to get it to heal…Lincoln came down and took one look at it, and changed the procedure. He said there was bacteria in the wound, requested that the nurses who were cleaning my wound daily start 'bactigras' for a few treatments to destroy bacteria and then 'silver cel'…at least that is the order I seem to recall (speak to your doctor)…my problem wound was healed very quickly with this treatment.
I like what John (JAG) has to say below.
All the best, Val
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- December 4, 2010 at 10:32 pm
Thanks Val,
I talked to my surgeon yesterday and we decided to do the wound vac…"activac"…I HAD to bring it up???!!!!! Thanks for your input!!!! I'll let you know how it goes!
Hugs,
Vermont_Donna
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- December 4, 2010 at 10:32 pm
Thanks Val,
I talked to my surgeon yesterday and we decided to do the wound vac…"activac"…I HAD to bring it up???!!!!! Thanks for your input!!!! I'll let you know how it goes!
Hugs,
Vermont_Donna
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- December 3, 2010 at 11:03 am
Hi everyone,
Thanks so much for your thoughts! Thats what I have been thinking, that amputation is NOT the way to go as I do have in transit mets and I probably do have some floaters out there. I also worry that I would die from 1. the procedure itself, 2. in the post op period from infection and trauma to my body 3. in several months out from the procedure from the infection my stump would get from the end NEVER healing!!! Why should the stump heal? I have two wounds on my leg that are not healing very fast or at all now! So I would have to be in a very differetn place than I am right now.
I am thinking positive that the IPI will work! I have had no side effects so far. Val, I do want the name of your doctor in Montreal…but how would I, an American, be able to access a Canadian doctor? I also am going to ask for some other referral doctors, Mass General, Dana Farber, 2nd opinions on the course of melanoma treatment and on my leg wounds. I am starting an all out project on researching how to heal my leg. Val, I hear you and Sharyn on the wound vac treatment. I googled that…it sounds promising, so I am going to look into that. I have called my surgeon to ask him about all these other treatments, NOT to talk about amputation.
THANKS SO MUCH!!! Please anyone else with thougths, stories, what they did, PLEASE WRITE! This helps so much!
Hugs,
Vermont_Donna
stage 3a
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- December 3, 2010 at 6:31 pm
Donna,
please email me so i can give u my #- im just catching up on you and would love to speak to you.
Have faith in ur Onc…. he is so fantastic and such a good doc… i miss him terribly.
im glad they are doing everything they can to keep you in trials and such.
hang tight my friend!
dawna
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- December 3, 2010 at 6:31 pm
Donna,
please email me so i can give u my #- im just catching up on you and would love to speak to you.
Have faith in ur Onc…. he is so fantastic and such a good doc… i miss him terribly.
im glad they are doing everything they can to keep you in trials and such.
hang tight my friend!
dawna
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- December 4, 2010 at 1:54 am
Who ever that Dr. was that said the word amputation….. I would have got up and hobbled, wheel chaired, crutches or whatever means I had to get the heck out of there.
They use to do amputations for melanoma patients in the 70's and most patients died way before they fully recovered from the amputation.
I know you are going through the IPI know… and I would of held out too… to be able to start the drug in hopes of curing you. Not sure I would give him a second chance with a next plan if IPI fails. I would be considering other options now while you have time.
We Wish You The Best Donna.. Prayers and Positive Thoughts for You and Family
Rocky (Stage IV Liver Mets)
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- December 4, 2010 at 1:54 am
Who ever that Dr. was that said the word amputation….. I would have got up and hobbled, wheel chaired, crutches or whatever means I had to get the heck out of there.
They use to do amputations for melanoma patients in the 70's and most patients died way before they fully recovered from the amputation.
I know you are going through the IPI know… and I would of held out too… to be able to start the drug in hopes of curing you. Not sure I would give him a second chance with a next plan if IPI fails. I would be considering other options now while you have time.
We Wish You The Best Donna.. Prayers and Positive Thoughts for You and Family
Rocky (Stage IV Liver Mets)
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- December 4, 2010 at 10:39 pm
Thanks Rocky,
Wow, you are having your own set of problems with news! I am learning so much from your posts and from a lot of posts here on MPIP and I love the support from people who walk in our shoes!!!!
Thanks,
Vermont_Donna
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- December 4, 2010 at 10:39 pm
Thanks Rocky,
Wow, you are having your own set of problems with news! I am learning so much from your posts and from a lot of posts here on MPIP and I love the support from people who walk in our shoes!!!!
Thanks,
Vermont_Donna
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- December 4, 2010 at 2:19 am
Donna,
Please know that you are in my thoughts and prayers. Of course, I am really hoping that Ipi is your magic bullet. It's nice that your mother is with you through all this. One day at a time…
Stay Strong
KingStage IV 7/05 Liver mets
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- December 4, 2010 at 10:41 pm
Hi King,
Thanks so much….yeah my mom is hanging in thre with me…she was crying along with me about the leg amputation. How are you doing??
Vermont_Donna
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- December 4, 2010 at 10:41 pm
Hi King,
Thanks so much….yeah my mom is hanging in thre with me…she was crying along with me about the leg amputation. How are you doing??
Vermont_Donna
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- December 4, 2010 at 3:07 am
Donna,
I am a Stage 3b survivor (primary on left forearm) diagnosed June 2008 – WLE on Sep 10th – left arm pit lymph nodes removal (Oct 16th) ( 2 nodes with micro mets) – interferon for 8 months – (ended sep 09)
came across this very interesting article – http://www.sciencedaily.com/releases/2010/11/101118124206.htm
Strangely , I am an Asian Indian ( aka dark skinned !! ) – living in the US since 1996 – and my oncologist says that I am the first Asian Indian that he has treated for melanoma !!
But I attribute my survival because of Yoga !!
Best Wishes,
Kish T
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- December 4, 2010 at 3:07 am
Donna,
I am a Stage 3b survivor (primary on left forearm) diagnosed June 2008 – WLE on Sep 10th – left arm pit lymph nodes removal (Oct 16th) ( 2 nodes with micro mets) – interferon for 8 months – (ended sep 09)
came across this very interesting article – http://www.sciencedaily.com/releases/2010/11/101118124206.htm
Strangely , I am an Asian Indian ( aka dark skinned !! ) – living in the US since 1996 – and my oncologist says that I am the first Asian Indian that he has treated for melanoma !!
But I attribute my survival because of Yoga !!
Best Wishes,
Kish T
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- December 4, 2010 at 10:17 am
Donna I am so sorry that it has been so rough. I am glad that you started the Ipi treatments and pray that it is your answer to beat the beast back. I think of you all the time and wish I was still in Vermont so we could meet.
Take care. I pray that you can find peace during this treatment and pray that you feel God's loving arms wrapped around you, holding you. Know that God is with you every step of the way.
Peace and blessings,
Shelly
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- December 4, 2010 at 10:45 pm
Hi Shelley,
Well I have my passport, I am just going to have to come to Switzerland! I have always wanted to got here ever since I fell in love with the book Heidi!!! And then The Sound of Music movie!!! Thanks for the support. How are you feeling??
Hugs,
Vermont_Donna
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- December 4, 2010 at 10:45 pm
Hi Shelley,
Well I have my passport, I am just going to have to come to Switzerland! I have always wanted to got here ever since I fell in love with the book Heidi!!! And then The Sound of Music movie!!! Thanks for the support. How are you feeling??
Hugs,
Vermont_Donna
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- December 4, 2010 at 10:17 am
Donna I am so sorry that it has been so rough. I am glad that you started the Ipi treatments and pray that it is your answer to beat the beast back. I think of you all the time and wish I was still in Vermont so we could meet.
Take care. I pray that you can find peace during this treatment and pray that you feel God's loving arms wrapped around you, holding you. Know that God is with you every step of the way.
Peace and blessings,
Shelly
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