› Forums › General Melanoma Community › Ipilimumab – a story of hope!
- This topic has 20 replies, 9 voices, and was last updated 13 years, 11 months ago by
JerryfromFauq.
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- June 24, 2011 at 8:47 am
Hi everyone
I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version):
I am the husband to a 39 year old woman from Denmark in Europe.
In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.
In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.
In 2008 melanoma relapsed in another lymph-node, surgery again.
Hi everyone
I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version):
I am the husband to a 39 year old woman from Denmark in Europe.
In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.
In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.
In 2008 melanoma relapsed in another lymph-node, surgery again.
In 2009 melanoma hit us hard (Stage IV). It had spread to her lungs, one met in each lung. The size of the mets was 25 mm and 16 mm respectively. Surgery was fortunately possible.
In October 2010 melanoma went back. This time there was multiples mets in each lung. About 5-6 mets in each lung. The biggest was 19 mm. It was unsurgeable, which was very hard to cope with.
In November she began Interferon/Interleukin-2 treatment. It was tough beyond imagination. She had all the known sideeffects, and she was so bad during hospitalization. The midway PET/CT scans in January revealed that she was a responder! Scans showed that all the mets had become inactive or necrotic. Some mets had even shrunk a little bit. We were delighted, and she continued with the third and fourth series of Interferon/IL-2.
February 15 we got the results of the next scan. We were optimistic because the midway scans was indeed promising. We were shocked when told that the melanoma had began to grow again. There was 2 active mets now. One big met, about 32 mm in diameter, in her right lung lightened up. In addiction there was a lot of fluid in the right lung membrane, and it probably contained melanoma-cells. All other mets was still inactive, except one, and our doctor feared that it would be only a matter of time, before the other mets would begin to grow again. We were devastated.
Our doctor suggested Ipilimumab, and my wife started March 11, on the same day Japan was shaken by the huge earthquake. I watched it on TV while she was receiving the first dose of ipilimumab (3 mg/kg dose). I remember wishing that the drug was the earthquake of our lives…
My wife have always been a positive and happy human being, no matter what challenges life would bring, she still truly believe that she could defeat this Melanoma Devil. She began consulting a Chinese doctor and received acupuncture twice a week. Beside this she trained 4-5 times a week, fitness and running. In these situations we talked about preparing your body to fight the cancer, with a "little" help from our friend, ipilimumab…
She received 4 doses every third week and got a CT scan in June.
Three days ago on June 21 we arrived to the hospital to talk with our doctor about the results of the CT scan. The time from the scans being done and to get the results is awful with a lot of anxiety, you guys all know… The scan showed that the 32 mm met in the right lung was completely GONE!!!!! The fluid was gone too, and the x-ray showed a nice healthy looking right lung. We were stunned. I hugged my wife with a lot of tears in my eyes. Our doctor was very delighted too. Ipilimumab had worked much better than expected. We had hoped for stabilization, maybe shrinkage, if we were lucky. But this???? Unbelievable. Some other small mets was still there but hasn´t grown in size in half a year, and our doctor said it very well could be necrotic tissue.
This is where we stand now. We´re thrilled and delighted and so so happy. We have now dared to plan for more than a month 🙂
So this story is to all you Warriors out there, keep on fighting with believe and trust in your hearts. The path is very tough but the battle can be won, sooner or later. We´ll keep fighting this Devil.
Kind regards
willtolive
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- June 24, 2011 at 1:31 pm
Thank you so much for posting your wife's success story. I'm so very happy for your wonderful news and hope this trend continues for years to come. Your wife's positive spirits and refusal to back down was also a contributing factor to her success – keep going!
I also have up to 15 mets in my lungs (all less than 1cm) and currently on dacarbazine as a first line treatment. Ipillumumab will be next if needed, so I truly hope I can have a similar story 🙂
Never give up!
Lisa
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- June 24, 2011 at 1:31 pm
Thank you so much for posting your wife's success story. I'm so very happy for your wonderful news and hope this trend continues for years to come. Your wife's positive spirits and refusal to back down was also a contributing factor to her success – keep going!
I also have up to 15 mets in my lungs (all less than 1cm) and currently on dacarbazine as a first line treatment. Ipillumumab will be next if needed, so I truly hope I can have a similar story 🙂
Never give up!
Lisa
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- June 24, 2011 at 1:31 pm
Read with tears of joy, thanksgiving,and awestruck wonder! Thank you so much for sharing your journey! Give your wife bunches of hugs & kisses!
Can I ask a favor of you please? If you're on Facebook, will you go to the Melanoma Prayer Center and post this please? You don't have to "like" the page, but this would give so many so much hope and give you & your wife alot of prayer support. There are a lot of people who read that page and aren't on here, and there are a lot around the world and who aren't counted in the official "likes." We need stories like yours and your wife's!
If you aren't on FB, while you can read everything on the page, I don't think you can post, so if you aren't on, could I have your permission to copy/paste what you've written and post it myself with whatever name/signature you wish?
And if you say "no" that you're sharing in this forum only, that's good too. I'm just grateful you shared!
Lord, in Your mercy, Thank You for what You're doing in this family. Continued blessings on them. Amen.
Grace and peace,
Carol
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- June 24, 2011 at 1:31 pm
Read with tears of joy, thanksgiving,and awestruck wonder! Thank you so much for sharing your journey! Give your wife bunches of hugs & kisses!
Can I ask a favor of you please? If you're on Facebook, will you go to the Melanoma Prayer Center and post this please? You don't have to "like" the page, but this would give so many so much hope and give you & your wife alot of prayer support. There are a lot of people who read that page and aren't on here, and there are a lot around the world and who aren't counted in the official "likes." We need stories like yours and your wife's!
If you aren't on FB, while you can read everything on the page, I don't think you can post, so if you aren't on, could I have your permission to copy/paste what you've written and post it myself with whatever name/signature you wish?
And if you say "no" that you're sharing in this forum only, that's good too. I'm just grateful you shared!
Lord, in Your mercy, Thank You for what You're doing in this family. Continued blessings on them. Amen.
Grace and peace,
Carol
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- June 24, 2011 at 1:36 pm
Willtolive,
Congrats on your immune response!!
Is it possible to contact about your therapies? I believe that the IFN/IL-2 set the stage for your complete response. Please contact me so I can get your whole time-line of therapies. Thanks in advance
Jimmy B
Did High Dose Interferon Alpha set the stage for the perfect Orchestration of an Immune Response?Melanoma..Jim Breitfeller
As I continue my search for the Holy Grail, I need to keep grounding myself to what really took place in the Melanoma treatment. I can not keep wondering if Interferon therapy had played a part in our successful treatment. Both Vicky and I did some IFN therapy first.http://melanomamissionary.blogspot.com/2010/01/did-high-dose-interferon-alpha-set.html
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- June 24, 2011 at 1:36 pm
Willtolive,
Congrats on your immune response!!
Is it possible to contact about your therapies? I believe that the IFN/IL-2 set the stage for your complete response. Please contact me so I can get your whole time-line of therapies. Thanks in advance
Jimmy B
Did High Dose Interferon Alpha set the stage for the perfect Orchestration of an Immune Response?Melanoma..Jim Breitfeller
As I continue my search for the Holy Grail, I need to keep grounding myself to what really took place in the Melanoma treatment. I can not keep wondering if Interferon therapy had played a part in our successful treatment. Both Vicky and I did some IFN therapy first.http://melanomamissionary.blogspot.com/2010/01/did-high-dose-interferon-alpha-set.html
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- June 24, 2011 at 3:11 pm
Praise God! I just had my second ipi transfusion last Friday.
I know that God is curing me, with a little boost from ipi and a lot of prayers and support from so many wonderful people.
Awesome post!
Hug your wife, plan for months from now, live life!
TracyLee
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- June 24, 2011 at 3:11 pm
Praise God! I just had my second ipi transfusion last Friday.
I know that God is curing me, with a little boost from ipi and a lot of prayers and support from so many wonderful people.
Awesome post!
Hug your wife, plan for months from now, live life!
TracyLee
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- June 24, 2011 at 8:41 pm
Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul. I am so happy for you….I pray it works like this for all of us. God Bless.
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- June 24, 2011 at 8:41 pm
Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul. I am so happy for you….I pray it works like this for all of us. God Bless.
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- June 24, 2011 at 8:41 pm
Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul. I am so happy for you….I pray it works like this for all of us. God Bless.
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- June 24, 2011 at 8:41 pm
Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul. I am so happy for you….I pray it works like this for all of us. God Bless.
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- July 9, 2011 at 8:18 am
I have had a strong suspicsion that there is a beneficial relationship between Ipi and il-2. Jimmy B has done much technical follow thru in this area. I urge that he be provided info on timing and dosage of treatment info. Il-2 often seems to "prime the pump" for other treatments that may follw it. in the case of Ipi, and il-2 it may be possible that each helps set the stage for continued inprovement by the other. Mow if we could get more dual treatment clinical trials.
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- July 9, 2011 at 8:18 am
I have had a strong suspicsion that there is a beneficial relationship between Ipi and il-2. Jimmy B has done much technical follow thru in this area. I urge that he be provided info on timing and dosage of treatment info. Il-2 often seems to "prime the pump" for other treatments that may follw it. in the case of Ipi, and il-2 it may be possible that each helps set the stage for continued inprovement by the other. Mow if we could get more dual treatment clinical trials.
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Tagged: cutaneous melanoma
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