Help…Looking For Answers

Oh I had a minor rash from Opdivo and it went away after 2 days.  I have had 3 treatments of Opdivo with only one issue with rash and now I have joint and back pain.  I think the DR can deal with some of the side effects with prednisone.  You may want to try Yervoy since there are only 4 doses.  I hope your Dr will reconsider the Opdivo and everyone says it will shrink tumors in only 2 weeks.

Tom

Oh I had a minor rash from Opdivo and it went away after 2 days.  I have had 3 treatments of Opdivo with only one issue with rash and now I have joint and back pain.  I think the DR can deal with some of the side effects with prednisone.  You may want to try Yervoy since there are only 4 doses.  I hope your Dr will reconsider the Opdivo and everyone says it will shrink tumors in only 2 weeks.

Tom

Oh I had a minor rash from Opdivo and it went away after 2 days.  I have had 3 treatments of Opdivo with only one issue with rash and now I have joint and back pain.  I think the DR can deal with some of the side effects with prednisone.  You may want to try Yervoy since there are only 4 doses.  I hope your Dr will reconsider the Opdivo and everyone says it will shrink tumors in only 2 weeks.

Tom

It is very strange that no other treatment plan has been discussed with you. When my Mom was making this decision we knew what the plan B was before she had plan A.  I think plan B should have been discussed well before now especially since you have planned the SRS treatment and you've know he likely "failed" Opdivo. 

Did either the general oncologist or radiation oncologist say that treatment after Opdivo could not be considered until his rash was completely cleared up?  If treatment is being delayed by the rash you really need to find a melanoma specialist to consult with. Specialists have much more knowledge and resources at their disposal compared to general oncologists and with Melanoma I only recommend seeing a specialist (preferably at a center of excellence, regardless of any distance). Have a consult could lead to resolving this rash faster and getting your husband into treatment sooner which is what you need to do.

I would recommend asking your oncologist what the next step is provided your husbands rash is gone now. If they don't have a plan or they don't mention options like getting him on a immunotherapy shortly after the SRS I would be worried, as this may indicate too much of a lack or knowledge or inexperience with treating this disease. I'd also ask your radiation oncologist what they would recommend if the rash was not an issue. By know they should know that SRS with immunotherapy increases the results compared to one treatment alone and considering that your husband had lung mets I'm at a loss at to why nothing else has been discussed.   – It could be that they are hoping to re-try Opdivo or don't know which they would recommend, but its really strange that there has been no conversation on this.

My Mother was diagnosed with Stage IV in 2013 at 77. Brain mets were mis diagnosed… She saw 4 melanoma specialists. The first 2 never looked at the images.  We found out about the brain mets during our 3rd consult and before starting any treatment.  We had the option to do SRS and BRAF pills or SRS and Yervoy. – We kept the BRAF pills in our back pocket and she had her first SRS treatment for 8 brain mets (1 was missed) followed by Yervoy 4 days later. 

The short delay between treatments I feel is one of the reasons my Mom did so well. In the studies I included below treatment was spread out a little more and they had better results with SRS and Yervoy compared to one treatment and I'm wondering if the timing could have just given her a bigger response that she would have received if treatment was delayed further. We will likely never know though…  

Her results, all things considered, have been simply amazing. I credit her amazing doctors (some are not the originals ones) with keeping her alive, active and cognitively healthy. I believe that if we had stuck with the original team she would not be here or as healthy as she is.

An increase in response rate may occur with SRS ad PD-1s too, but I don't believe there are any studies yet.  I do know that my Mom's radiation oncologist wanted to wait a few weeks between SRS and Keytruda because then there was no data on timing.  (She had a reoccurrence over the summer and a new met).  However, with Yervoy they wanted the two very close together.  i.e. Monday SRS and Friday was Yervoy… She went from 18 tumors on her head, 1 neck, 6 trunk (lungs, adrenal gland, live & Kidney) to 0 on head and neck, and 3 very very small tumors in her trunk. She's had 28 brain mets (including a craniotomy) and is very active and has had no real down time, but had to stop driving for a while. 

You  should know that she had a few misdiagnosis which is why I always recommend more than one consult and I recommend this even during treatment. I recommend to always question what is going on and learn from thoes here and research things your self too. If something doesn't sound or feel right get a second opinion can really help you.

I wish you luck.

Read these studies and discuss this and other immunotherapies with your doctors:

Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.

Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.

It is very strange that no other treatment plan has been discussed with you. When my Mom was making this decision we knew what the plan B was before she had plan A.  I think plan B should have been discussed well before now especially since you have planned the SRS treatment and you've know he likely "failed" Opdivo. 

Did either the general oncologist or radiation oncologist say that treatment after Opdivo could not be considered until his rash was completely cleared up?  If treatment is being delayed by the rash you really need to find a melanoma specialist to consult with. Specialists have much more knowledge and resources at their disposal compared to general oncologists and with Melanoma I only recommend seeing a specialist (preferably at a center of excellence, regardless of any distance). Have a consult could lead to resolving this rash faster and getting your husband into treatment sooner which is what you need to do.

I would recommend asking your oncologist what the next step is provided your husbands rash is gone now. If they don't have a plan or they don't mention options like getting him on a immunotherapy shortly after the SRS I would be worried, as this may indicate too much of a lack or knowledge or inexperience with treating this disease. I'd also ask your radiation oncologist what they would recommend if the rash was not an issue. By know they should know that SRS with immunotherapy increases the results compared to one treatment alone and considering that your husband had lung mets I'm at a loss at to why nothing else has been discussed.   – It could be that they are hoping to re-try Opdivo or don't know which they would recommend, but its really strange that there has been no conversation on this.

My Mother was diagnosed with Stage IV in 2013 at 77. Brain mets were mis diagnosed… She saw 4 melanoma specialists. The first 2 never looked at the images.  We found out about the brain mets during our 3rd consult and before starting any treatment.  We had the option to do SRS and BRAF pills or SRS and Yervoy. – We kept the BRAF pills in our back pocket and she had her first SRS treatment for 8 brain mets (1 was missed) followed by Yervoy 4 days later. 

The short delay between treatments I feel is one of the reasons my Mom did so well. In the studies I included below treatment was spread out a little more and they had better results with SRS and Yervoy compared to one treatment and I'm wondering if the timing could have just given her a bigger response that she would have received if treatment was delayed further. We will likely never know though…  

Her results, all things considered, have been simply amazing. I credit her amazing doctors (some are not the originals ones) with keeping her alive, active and cognitively healthy. I believe that if we had stuck with the original team she would not be here or as healthy as she is.

An increase in response rate may occur with SRS ad PD-1s too, but I don't believe there are any studies yet.  I do know that my Mom's radiation oncologist wanted to wait a few weeks between SRS and Keytruda because then there was no data on timing.  (She had a reoccurrence over the summer and a new met).  However, with Yervoy they wanted the two very close together.  i.e. Monday SRS and Friday was Yervoy… She went from 18 tumors on her head, 1 neck, 6 trunk (lungs, adrenal gland, live & Kidney) to 0 on head and neck, and 3 very very small tumors in her trunk. She's had 28 brain mets (including a craniotomy) and is very active and has had no real down time, but had to stop driving for a while. 

You  should know that she had a few misdiagnosis which is why I always recommend more than one consult and I recommend this even during treatment. I recommend to always question what is going on and learn from thoes here and research things your self too. If something doesn't sound or feel right get a second opinion can really help you.

I wish you luck.

Read these studies and discuss this and other immunotherapies with your doctors:

Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.

Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.

It is very strange that no other treatment plan has been discussed with you. When my Mom was making this decision we knew what the plan B was before she had plan A.  I think plan B should have been discussed well before now especially since you have planned the SRS treatment and you've know he likely "failed" Opdivo. 

Did either the general oncologist or radiation oncologist say that treatment after Opdivo could not be considered until his rash was completely cleared up?  If treatment is being delayed by the rash you really need to find a melanoma specialist to consult with. Specialists have much more knowledge and resources at their disposal compared to general oncologists and with Melanoma I only recommend seeing a specialist (preferably at a center of excellence, regardless of any distance). Have a consult could lead to resolving this rash faster and getting your husband into treatment sooner which is what you need to do.

I would recommend asking your oncologist what the next step is provided your husbands rash is gone now. If they don't have a plan or they don't mention options like getting him on a immunotherapy shortly after the SRS I would be worried, as this may indicate too much of a lack or knowledge or inexperience with treating this disease. I'd also ask your radiation oncologist what they would recommend if the rash was not an issue. By know they should know that SRS with immunotherapy increases the results compared to one treatment alone and considering that your husband had lung mets I'm at a loss at to why nothing else has been discussed.   – It could be that they are hoping to re-try Opdivo or don't know which they would recommend, but its really strange that there has been no conversation on this.

My Mother was diagnosed with Stage IV in 2013 at 77. Brain mets were mis diagnosed… She saw 4 melanoma specialists. The first 2 never looked at the images.  We found out about the brain mets during our 3rd consult and before starting any treatment.  We had the option to do SRS and BRAF pills or SRS and Yervoy. – We kept the BRAF pills in our back pocket and she had her first SRS treatment for 8 brain mets (1 was missed) followed by Yervoy 4 days later. 

The short delay between treatments I feel is one of the reasons my Mom did so well. In the studies I included below treatment was spread out a little more and they had better results with SRS and Yervoy compared to one treatment and I'm wondering if the timing could have just given her a bigger response that she would have received if treatment was delayed further. We will likely never know though…  

Her results, all things considered, have been simply amazing. I credit her amazing doctors (some are not the originals ones) with keeping her alive, active and cognitively healthy. I believe that if we had stuck with the original team she would not be here or as healthy as she is.

An increase in response rate may occur with SRS ad PD-1s too, but I don't believe there are any studies yet.  I do know that my Mom's radiation oncologist wanted to wait a few weeks between SRS and Keytruda because then there was no data on timing.  (She had a reoccurrence over the summer and a new met).  However, with Yervoy they wanted the two very close together.  i.e. Monday SRS and Friday was Yervoy… She went from 18 tumors on her head, 1 neck, 6 trunk (lungs, adrenal gland, live & Kidney) to 0 on head and neck, and 3 very very small tumors in her trunk. She's had 28 brain mets (including a craniotomy) and is very active and has had no real down time, but had to stop driving for a while. 

You  should know that she had a few misdiagnosis which is why I always recommend more than one consult and I recommend this even during treatment. I recommend to always question what is going on and learn from thoes here and research things your self too. If something doesn't sound or feel right get a second opinion can really help you.

I wish you luck.

Read these studies and discuss this and other immunotherapies with your doctors:

Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.

Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.