› Forums › General Melanoma Community › Reoccurrence
- This topic has 18 replies, 4 voices, and was last updated 7 years, 6 months ago by
beans920.
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- September 27, 2016 at 9:35 pm
Hello all,
My husband was diagnosed with stage IIIC Melanoma two years ago. He underwent immunotherapy including the maintenance program. He had a CAT scan in June which showed nothing even though he felt pain in the center of his chest. Three months later he had a PET scan which resulted in a tumor in his lymph node and sternum. Has anyone else experienced something similar? Maybe I'm naïve but I wasn't expecting a reoccurrence somehow. So worried. I'm trying to figure things out and be strong for my husband and children. Any input or suggestions for treatment you may have would be appreciated.
Wishing everyone strength and good health.
Thank you,
Jenine
- Replies
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- September 28, 2016 at 9:12 am
Hi Jenine,
What immunotherapy did your husband complete? What is his BRAf status? Those are important to know when thinking about future care. Sorry that you and your husband are dealing with this. Sadly, melanoma plays by its own rules and many do deal with recurrences. Hang in there. Celeste
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- September 28, 2016 at 9:12 am
Hi Jenine,
What immunotherapy did your husband complete? What is his BRAf status? Those are important to know when thinking about future care. Sorry that you and your husband are dealing with this. Sadly, melanoma plays by its own rules and many do deal with recurrences. Hang in there. Celeste
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- October 2, 2016 at 12:23 am
Hello Celeste,
Thank you for replying to my question. We are still waiting for bills Braf test to come back. From what I understand it will either be positive or negative. Our doctors have talked to us about participating in a case study13-105. I believe it's a combination of Keytruda, Braf inhibitor or maybe Peg. All these drug names are a bit confusing to me right now. Maybe I will better understand once his braf results are determined.
God bless you,
Jenine
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- October 2, 2016 at 12:23 am
Hello Celeste,
Thank you for replying to my question. We are still waiting for bills Braf test to come back. From what I understand it will either be positive or negative. Our doctors have talked to us about participating in a case study13-105. I believe it's a combination of Keytruda, Braf inhibitor or maybe Peg. All these drug names are a bit confusing to me right now. Maybe I will better understand once his braf results are determined.
God bless you,
Jenine
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- October 2, 2016 at 12:23 am
Hello Celeste,
Thank you for replying to my question. We are still waiting for bills Braf test to come back. From what I understand it will either be positive or negative. Our doctors have talked to us about participating in a case study13-105. I believe it's a combination of Keytruda, Braf inhibitor or maybe Peg. All these drug names are a bit confusing to me right now. Maybe I will better understand once his braf results are determined.
God bless you,
Jenine
-
- September 28, 2016 at 9:12 am
Hi Jenine,
What immunotherapy did your husband complete? What is his BRAf status? Those are important to know when thinking about future care. Sorry that you and your husband are dealing with this. Sadly, melanoma plays by its own rules and many do deal with recurrences. Hang in there. Celeste
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- September 29, 2016 at 1:01 am
Hello Jenine, I have had cancer on my sternum and also had Yervoy and 1 maintenance dose. All was clear for 10 months and the cancer came back to the sternum. Had radiation which appeared to kill it but 7 months later it came back to the sternum. Now I've had a heavy dose of radiation and Pembro at the same time. Radiation was in late June early July and my Pembro started 2 weeks before that. I just had my 6th dose of Pembro and finally had scans. Tumor has shrunk by 60% and I can't feel it. New we were working in the right direction after the 3rd dose of Pembro as I could feel it shrinking in size. The Pembro has been very easy to deal with compared to Yervoy with very few side effects. Mine grew very quickly and my Drs. were surprised by its size but thats melanoma. Hope this helps a little. My prayers to your family. Beans
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- October 2, 2016 at 12:32 am
Hello Beans,
Sounds like you're heading in the right direction and your tumors are shrinking. Glad you have less side effects from pembro. This is my husband's second go around with melanoma. The tumor on his sternum is quite painful. He also has a tumor on his neck in a lymph lode which is rather large but does not seem to hurt. We may be participating in trial study 13–105. No radiation or surgery as part of our treatment right now. Stay strong Beans!
God bless you,
Jenine
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- October 2, 2016 at 12:32 am
Hello Beans,
Sounds like you're heading in the right direction and your tumors are shrinking. Glad you have less side effects from pembro. This is my husband's second go around with melanoma. The tumor on his sternum is quite painful. He also has a tumor on his neck in a lymph lode which is rather large but does not seem to hurt. We may be participating in trial study 13–105. No radiation or surgery as part of our treatment right now. Stay strong Beans!
God bless you,
Jenine
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- October 2, 2016 at 12:32 am
Hello Beans,
Sounds like you're heading in the right direction and your tumors are shrinking. Glad you have less side effects from pembro. This is my husband's second go around with melanoma. The tumor on his sternum is quite painful. He also has a tumor on his neck in a lymph lode which is rather large but does not seem to hurt. We may be participating in trial study 13–105. No radiation or surgery as part of our treatment right now. Stay strong Beans!
God bless you,
Jenine
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- October 3, 2016 at 1:13 am
Hi Jenine, You mentioned your husbands tumor on sternum is quite painful. My Drs. often asked me how painful ime was and they couldn't believe me when I told them I rarely felt anything even as it grew quite large. I could feel it with my hand but I would say very little if any pain. Just shows what a bastard disease this is. Just wanted to mention when I had the Yervoy it was in a trial with Interferon also given. Made me feel like I was in another state of mind, miserable. Prayers for you and your entire family, hang in there. Beans
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- October 3, 2016 at 1:13 am
Hi Jenine, You mentioned your husbands tumor on sternum is quite painful. My Drs. often asked me how painful ime was and they couldn't believe me when I told them I rarely felt anything even as it grew quite large. I could feel it with my hand but I would say very little if any pain. Just shows what a bastard disease this is. Just wanted to mention when I had the Yervoy it was in a trial with Interferon also given. Made me feel like I was in another state of mind, miserable. Prayers for you and your entire family, hang in there. Beans
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- October 3, 2016 at 1:13 am
Hi Jenine, You mentioned your husbands tumor on sternum is quite painful. My Drs. often asked me how painful ime was and they couldn't believe me when I told them I rarely felt anything even as it grew quite large. I could feel it with my hand but I would say very little if any pain. Just shows what a bastard disease this is. Just wanted to mention when I had the Yervoy it was in a trial with Interferon also given. Made me feel like I was in another state of mind, miserable. Prayers for you and your entire family, hang in there. Beans
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- September 29, 2016 at 1:01 am
Hello Jenine, I have had cancer on my sternum and also had Yervoy and 1 maintenance dose. All was clear for 10 months and the cancer came back to the sternum. Had radiation which appeared to kill it but 7 months later it came back to the sternum. Now I've had a heavy dose of radiation and Pembro at the same time. Radiation was in late June early July and my Pembro started 2 weeks before that. I just had my 6th dose of Pembro and finally had scans. Tumor has shrunk by 60% and I can't feel it. New we were working in the right direction after the 3rd dose of Pembro as I could feel it shrinking in size. The Pembro has been very easy to deal with compared to Yervoy with very few side effects. Mine grew very quickly and my Drs. were surprised by its size but thats melanoma. Hope this helps a little. My prayers to your family. Beans
-
- September 29, 2016 at 1:01 am
Hello Jenine, I have had cancer on my sternum and also had Yervoy and 1 maintenance dose. All was clear for 10 months and the cancer came back to the sternum. Had radiation which appeared to kill it but 7 months later it came back to the sternum. Now I've had a heavy dose of radiation and Pembro at the same time. Radiation was in late June early July and my Pembro started 2 weeks before that. I just had my 6th dose of Pembro and finally had scans. Tumor has shrunk by 60% and I can't feel it. New we were working in the right direction after the 3rd dose of Pembro as I could feel it shrinking in size. The Pembro has been very easy to deal with compared to Yervoy with very few side effects. Mine grew very quickly and my Drs. were surprised by its size but thats melanoma. Hope this helps a little. My prayers to your family. Beans
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- October 2, 2016 at 1:51 am
Jenine,
Sorry your family is having to deal with this. It sucks. No other way to say it.
I did a quick google search on the trial you mentioned. Only results I found were concerning the DLTs (Dose limiting Toxicity) of the Phase I trials. Generally during phase I they are looking to see how much of a drug the patients can withstand and then once they figure that out in Phase II they try and find the optimal dose. Are you being seen at Pittsburgh? Pittsburgh and a Dr. Kirkwood have a long history with interferon. I will tell you interferon as a solo drug is and has been a controversial drug for a long time. How it will work in conjunction with MK 3475 (also know as pembroluzimab or Keytruda) is still unknow.
As others have mentioned, there seems to be a lot of benefit with doing radiation and Pembro at the same time. That would be an option to discuss with your doctors. Being in a trial has many advantages and disadvantages. A couple advantage are you get a lot of monitoring and scans and also the drug is provided free. Depending on your insurance and financial situation that can be huge when one infusion of pembro can be in excess of $10,000.
I'm a big advocate of trials. There are many good ones now that are combining a Anti-PD1 drug (such as Pembo or another drug known as Nivolumab or Opdivo) with another novel drug. You may want to go to clinicaltrials.gov and do a search for melanoma. You can then go to the map tab and click on the state or states near you to see trials which are available near you. MRF also has a free trial finder service.
Best of luck. This is a great place for knowlege and emotional support. Suggest you check out Celeste's blog. It is a weath of knowledge.
Brian
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- October 2, 2016 at 1:51 am
Jenine,
Sorry your family is having to deal with this. It sucks. No other way to say it.
I did a quick google search on the trial you mentioned. Only results I found were concerning the DLTs (Dose limiting Toxicity) of the Phase I trials. Generally during phase I they are looking to see how much of a drug the patients can withstand and then once they figure that out in Phase II they try and find the optimal dose. Are you being seen at Pittsburgh? Pittsburgh and a Dr. Kirkwood have a long history with interferon. I will tell you interferon as a solo drug is and has been a controversial drug for a long time. How it will work in conjunction with MK 3475 (also know as pembroluzimab or Keytruda) is still unknow.
As others have mentioned, there seems to be a lot of benefit with doing radiation and Pembro at the same time. That would be an option to discuss with your doctors. Being in a trial has many advantages and disadvantages. A couple advantage are you get a lot of monitoring and scans and also the drug is provided free. Depending on your insurance and financial situation that can be huge when one infusion of pembro can be in excess of $10,000.
I'm a big advocate of trials. There are many good ones now that are combining a Anti-PD1 drug (such as Pembo or another drug known as Nivolumab or Opdivo) with another novel drug. You may want to go to clinicaltrials.gov and do a search for melanoma. You can then go to the map tab and click on the state or states near you to see trials which are available near you. MRF also has a free trial finder service.
Best of luck. This is a great place for knowlege and emotional support. Suggest you check out Celeste's blog. It is a weath of knowledge.
Brian
-
- October 2, 2016 at 1:51 am
Jenine,
Sorry your family is having to deal with this. It sucks. No other way to say it.
I did a quick google search on the trial you mentioned. Only results I found were concerning the DLTs (Dose limiting Toxicity) of the Phase I trials. Generally during phase I they are looking to see how much of a drug the patients can withstand and then once they figure that out in Phase II they try and find the optimal dose. Are you being seen at Pittsburgh? Pittsburgh and a Dr. Kirkwood have a long history with interferon. I will tell you interferon as a solo drug is and has been a controversial drug for a long time. How it will work in conjunction with MK 3475 (also know as pembroluzimab or Keytruda) is still unknow.
As others have mentioned, there seems to be a lot of benefit with doing radiation and Pembro at the same time. That would be an option to discuss with your doctors. Being in a trial has many advantages and disadvantages. A couple advantage are you get a lot of monitoring and scans and also the drug is provided free. Depending on your insurance and financial situation that can be huge when one infusion of pembro can be in excess of $10,000.
I'm a big advocate of trials. There are many good ones now that are combining a Anti-PD1 drug (such as Pembo or another drug known as Nivolumab or Opdivo) with another novel drug. You may want to go to clinicaltrials.gov and do a search for melanoma. You can then go to the map tab and click on the state or states near you to see trials which are available near you. MRF also has a free trial finder service.
Best of luck. This is a great place for knowlege and emotional support. Suggest you check out Celeste's blog. It is a weath of knowledge.
Brian
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