› Forums › Mucosal Melanoma Community › Treatment Update and Combo of Nivolaumab/Ipilmumab (trial)
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Buddy0513.
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- September 19, 2016 at 11:16 pm
Hi everyone,
I posted a few days ago about my mom having a horrible experience with the one hospital and how we were waiting for a second opinon. Today we went for that second opinion so I thought I would follow up with you all.
The melanoma specialist immediately stated he did not see the Keytruda being the best fit for her, especially since it is mucosal melanoma and melanoma is aggressive. (He was also shocked at our treatment in the other hospital). He gave us the options of Nivolaumab and Ipiimumab or Nivolaumab, Ipilmumab and Saragramostim (which is a trial). He did not state anything other than he wanted to start treatment right away since it has been almost 2 months since this diagnosis and she has not received care and is in a lot of pain due to the location of the large tumor.
Has anyone else had any experience with the combination of Nivolaumab and Ipilimumab? I am trying to do some research for her just to get an idea what to expect. As for the trial, I can't seem to find much on this Saragramostim either…(other than the very scary side effects that my mom doesn't feel 100% comfortable with!)
Overall, we had a better experience at this hospital, we were immediately given a social worker, friendly staff and the center was packed with patients (which I took as a good sign because the other hospital was relatively empty!)
Thanks again for all who read this…We are only beginning the journey and are absolutely terrified at this point, more than ever before, since we kept getting such negativity that the drugs wouldn't work etc..I'll keep everyone updated as I can!
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- September 20, 2016 at 3:36 am
Hi there –
So sorry to hear about your mom, but so glad you are out there advocating on her behalf. She is so blessed to have you by her side during this difficult time!
Please share with your mom that I also have mucosal melanoma and became Stage IV just months after my diagnosis in June of 2015. I was lucky enough to be in the hands of one of the top melanoma specialists in the country and was given the ipi/nivo combo. I admit it was rough to get all 4 doses in, but frequent and immediate communication of any and all symptoms helped me make it through all 4. While in my case my mets advanced to the brain, they are currently under control and we believe that's because the immunotherapy kicked in. So definitely don't delay.
I haven't heard about the Saragramostim option, but could recommend the ipi/nivo combo from my experience. Side effects should be manageable through steroids but it wil be super important your mom isn't shy about communicating any new symptoms to her doctor. That's a definite must if she goes down that path.
Please continue to keep us posted on her decision & treatment!
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- September 22, 2016 at 12:51 am
Thank you so much for this response. I did share this with my mom and both her and I are happy to hear that something worked for you! My mom is actually starting treatment tomorrow, instead of next week, so we are hoping for some good news. The Dr. called us once he had found out that my mom would be waiting another week and wanted to get us in right away since she has already been waiting for treatment 2 months already since being diagnosed.
Thank you for the advice also of the side effects, it is different for everyone, but it is good to know that the communication part is key to get all of the doses in should they be needed.
I definitely will be keeping everyone updated here! Thanks again 😀
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- September 22, 2016 at 12:51 am
Thank you so much for this response. I did share this with my mom and both her and I are happy to hear that something worked for you! My mom is actually starting treatment tomorrow, instead of next week, so we are hoping for some good news. The Dr. called us once he had found out that my mom would be waiting another week and wanted to get us in right away since she has already been waiting for treatment 2 months already since being diagnosed.
Thank you for the advice also of the side effects, it is different for everyone, but it is good to know that the communication part is key to get all of the doses in should they be needed.
I definitely will be keeping everyone updated here! Thanks again 😀
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- September 22, 2016 at 12:51 am
Thank you so much for this response. I did share this with my mom and both her and I are happy to hear that something worked for you! My mom is actually starting treatment tomorrow, instead of next week, so we are hoping for some good news. The Dr. called us once he had found out that my mom would be waiting another week and wanted to get us in right away since she has already been waiting for treatment 2 months already since being diagnosed.
Thank you for the advice also of the side effects, it is different for everyone, but it is good to know that the communication part is key to get all of the doses in should they be needed.
I definitely will be keeping everyone updated here! Thanks again 😀
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- September 20, 2016 at 3:36 am
Hi there –
So sorry to hear about your mom, but so glad you are out there advocating on her behalf. She is so blessed to have you by her side during this difficult time!
Please share with your mom that I also have mucosal melanoma and became Stage IV just months after my diagnosis in June of 2015. I was lucky enough to be in the hands of one of the top melanoma specialists in the country and was given the ipi/nivo combo. I admit it was rough to get all 4 doses in, but frequent and immediate communication of any and all symptoms helped me make it through all 4. While in my case my mets advanced to the brain, they are currently under control and we believe that's because the immunotherapy kicked in. So definitely don't delay.
I haven't heard about the Saragramostim option, but could recommend the ipi/nivo combo from my experience. Side effects should be manageable through steroids but it wil be super important your mom isn't shy about communicating any new symptoms to her doctor. That's a definite must if she goes down that path.
Please continue to keep us posted on her decision & treatment!
-
- September 20, 2016 at 3:36 am
Hi there –
So sorry to hear about your mom, but so glad you are out there advocating on her behalf. She is so blessed to have you by her side during this difficult time!
Please share with your mom that I also have mucosal melanoma and became Stage IV just months after my diagnosis in June of 2015. I was lucky enough to be in the hands of one of the top melanoma specialists in the country and was given the ipi/nivo combo. I admit it was rough to get all 4 doses in, but frequent and immediate communication of any and all symptoms helped me make it through all 4. While in my case my mets advanced to the brain, they are currently under control and we believe that's because the immunotherapy kicked in. So definitely don't delay.
I haven't heard about the Saragramostim option, but could recommend the ipi/nivo combo from my experience. Side effects should be manageable through steroids but it wil be super important your mom isn't shy about communicating any new symptoms to her doctor. That's a definite must if she goes down that path.
Please continue to keep us posted on her decision & treatment!
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- September 20, 2016 at 5:01 am
Hi,
Is the trial IPI plus nivo v IPI plus nivo plus sagramostim ?
If so your mum might be randomised to either arm of the trial.
Combo treatments seem to have better response rates than single agents alone.
In an earlier trial of IPI plus sagramostim v IPI alone there were favourable results for side effects and survival for the arm with sagramostim and as an extra bonus the side effect profile was better too.
There are a number of posters on here who have experience of IPI and nivo and whilst the regime can be tough ,it can have great rewards. Your mums doctors are also likely to be experienced at managing possible side effects too if they are a trial centre.
I would try and make sure you understand which costs are met by the trial and which your insurance has to cover.. …
But it is important to get treatment started and either of these sounds much better than what you were previously offered and the decision as to if it is all 3 agents may well be out of your hands..so now you have experts on your team I would take their advice and go forward it and worry about dealing with side effects once they present….they seem to be cumulative with doses.
Lots of info on the board if you do a search..but if you get to the conclusion that the treatment offered is the best way forward then it might be better to just get it started and deal with the side effects your mum actually gets..although knowing what to watch out for and report promptly is also important.
Brest of luck to you both
Deb
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- September 22, 2016 at 12:54 am
We actually decided to not go with the trial. Aside from not being comfortable with doing a needle shot each night and the strage side effects, the trial called for all new scans which would delay her treatment even more.
Treatment was originally scheduled for next Thursday, but the Dr. bumped us up to tomorrow to get something started since our entire trip since her diagnosis about 2 months ago has been a nightmare. I am assuming he didn't want to wait anymore. We are just planning to deal with the side effects as they come like you said, especially since she has been in pain for about 2 months now from where the tumor is located and how it is pushing on other organs.
Thank you so much for the response I will definitely be keeping everyone updated!
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- September 22, 2016 at 12:54 am
We actually decided to not go with the trial. Aside from not being comfortable with doing a needle shot each night and the strage side effects, the trial called for all new scans which would delay her treatment even more.
Treatment was originally scheduled for next Thursday, but the Dr. bumped us up to tomorrow to get something started since our entire trip since her diagnosis about 2 months ago has been a nightmare. I am assuming he didn't want to wait anymore. We are just planning to deal with the side effects as they come like you said, especially since she has been in pain for about 2 months now from where the tumor is located and how it is pushing on other organs.
Thank you so much for the response I will definitely be keeping everyone updated!
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- September 22, 2016 at 12:54 am
We actually decided to not go with the trial. Aside from not being comfortable with doing a needle shot each night and the strage side effects, the trial called for all new scans which would delay her treatment even more.
Treatment was originally scheduled for next Thursday, but the Dr. bumped us up to tomorrow to get something started since our entire trip since her diagnosis about 2 months ago has been a nightmare. I am assuming he didn't want to wait anymore. We are just planning to deal with the side effects as they come like you said, especially since she has been in pain for about 2 months now from where the tumor is located and how it is pushing on other organs.
Thank you so much for the response I will definitely be keeping everyone updated!
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- September 20, 2016 at 5:01 am
Hi,
Is the trial IPI plus nivo v IPI plus nivo plus sagramostim ?
If so your mum might be randomised to either arm of the trial.
Combo treatments seem to have better response rates than single agents alone.
In an earlier trial of IPI plus sagramostim v IPI alone there were favourable results for side effects and survival for the arm with sagramostim and as an extra bonus the side effect profile was better too.
There are a number of posters on here who have experience of IPI and nivo and whilst the regime can be tough ,it can have great rewards. Your mums doctors are also likely to be experienced at managing possible side effects too if they are a trial centre.
I would try and make sure you understand which costs are met by the trial and which your insurance has to cover.. …
But it is important to get treatment started and either of these sounds much better than what you were previously offered and the decision as to if it is all 3 agents may well be out of your hands..so now you have experts on your team I would take their advice and go forward it and worry about dealing with side effects once they present….they seem to be cumulative with doses.
Lots of info on the board if you do a search..but if you get to the conclusion that the treatment offered is the best way forward then it might be better to just get it started and deal with the side effects your mum actually gets..although knowing what to watch out for and report promptly is also important.
Brest of luck to you both
Deb
-
- September 20, 2016 at 5:01 am
Hi,
Is the trial IPI plus nivo v IPI plus nivo plus sagramostim ?
If so your mum might be randomised to either arm of the trial.
Combo treatments seem to have better response rates than single agents alone.
In an earlier trial of IPI plus sagramostim v IPI alone there were favourable results for side effects and survival for the arm with sagramostim and as an extra bonus the side effect profile was better too.
There are a number of posters on here who have experience of IPI and nivo and whilst the regime can be tough ,it can have great rewards. Your mums doctors are also likely to be experienced at managing possible side effects too if they are a trial centre.
I would try and make sure you understand which costs are met by the trial and which your insurance has to cover.. …
But it is important to get treatment started and either of these sounds much better than what you were previously offered and the decision as to if it is all 3 agents may well be out of your hands..so now you have experts on your team I would take their advice and go forward it and worry about dealing with side effects once they present….they seem to be cumulative with doses.
Lots of info on the board if you do a search..but if you get to the conclusion that the treatment offered is the best way forward then it might be better to just get it started and deal with the side effects your mum actually gets..although knowing what to watch out for and report promptly is also important.
Brest of luck to you both
Deb
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- September 20, 2016 at 1:30 pm
I had my 4th dose of the combo on 9/9/2016. I have been very lucky on side effects. 2 weeks after the first dose I was very happy to see the rash appear because I knew my body was reacting to it. My rash only itched in 3 or 4 spots. Most people say the rash is horrible but I didn't experience that. I had a lot of fatiuge and no appetite for about the first 4 weeks. I developed fever during the 3rd week and it laster 6 weeks and wasn't that bad as long as I took motrin every 4 hours. Just as the fever ended my mouth and salava became supper thick and dry. Sometimes it was like I had glue in my mouth and my sweet and sour taste buds were messed up. This morning I think I may be getting over the mouth issue at 3 weeks. I did have a scan at 8 weeks which was 6 weeks early due to a couple of chest xrays looking good. 2 tumors were gone to the point they really could not say if they were gone or not. 3 other tumors were smaller and 2 were slightly larger. It was 30 days between my PET scan and my first dose so I assume these tumors had grown a lot and were probably shrinking but still larger than the first scan. After my 3rd dose I started feeling much better. I have been going to work the whole time but last week was my first whole week but mainly due to going to the dr which is a 3 hour drive. I have still been doing most things I did before I started treatment. I even started going back to the gym. All my tumors are in both lungs. I had one between my neck and upper shoulder but had surgury for it. I start just the opdivo next week for 4 doses then back to both drugs during the maintanance phase.
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- September 20, 2016 at 1:30 pm
I had my 4th dose of the combo on 9/9/2016. I have been very lucky on side effects. 2 weeks after the first dose I was very happy to see the rash appear because I knew my body was reacting to it. My rash only itched in 3 or 4 spots. Most people say the rash is horrible but I didn't experience that. I had a lot of fatiuge and no appetite for about the first 4 weeks. I developed fever during the 3rd week and it laster 6 weeks and wasn't that bad as long as I took motrin every 4 hours. Just as the fever ended my mouth and salava became supper thick and dry. Sometimes it was like I had glue in my mouth and my sweet and sour taste buds were messed up. This morning I think I may be getting over the mouth issue at 3 weeks. I did have a scan at 8 weeks which was 6 weeks early due to a couple of chest xrays looking good. 2 tumors were gone to the point they really could not say if they were gone or not. 3 other tumors were smaller and 2 were slightly larger. It was 30 days between my PET scan and my first dose so I assume these tumors had grown a lot and were probably shrinking but still larger than the first scan. After my 3rd dose I started feeling much better. I have been going to work the whole time but last week was my first whole week but mainly due to going to the dr which is a 3 hour drive. I have still been doing most things I did before I started treatment. I even started going back to the gym. All my tumors are in both lungs. I had one between my neck and upper shoulder but had surgury for it. I start just the opdivo next week for 4 doses then back to both drugs during the maintanance phase.
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- September 20, 2016 at 1:30 pm
I had my 4th dose of the combo on 9/9/2016. I have been very lucky on side effects. 2 weeks after the first dose I was very happy to see the rash appear because I knew my body was reacting to it. My rash only itched in 3 or 4 spots. Most people say the rash is horrible but I didn't experience that. I had a lot of fatiuge and no appetite for about the first 4 weeks. I developed fever during the 3rd week and it laster 6 weeks and wasn't that bad as long as I took motrin every 4 hours. Just as the fever ended my mouth and salava became supper thick and dry. Sometimes it was like I had glue in my mouth and my sweet and sour taste buds were messed up. This morning I think I may be getting over the mouth issue at 3 weeks. I did have a scan at 8 weeks which was 6 weeks early due to a couple of chest xrays looking good. 2 tumors were gone to the point they really could not say if they were gone or not. 3 other tumors were smaller and 2 were slightly larger. It was 30 days between my PET scan and my first dose so I assume these tumors had grown a lot and were probably shrinking but still larger than the first scan. After my 3rd dose I started feeling much better. I have been going to work the whole time but last week was my first whole week but mainly due to going to the dr which is a 3 hour drive. I have still been doing most things I did before I started treatment. I even started going back to the gym. All my tumors are in both lungs. I had one between my neck and upper shoulder but had surgury for it. I start just the opdivo next week for 4 doses then back to both drugs during the maintanance phase.
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- September 22, 2016 at 12:58 am
Thanks for sharing your experience! Those are some very strange side effects, at least the one about glue in the mouth!
If you don't mind me asking, did you experience any other pain with the tumors or anything as they shrunk? Or any other strange things that had you thinking the treatment was working? I am not sure what the size of your tumors were, but the one my mom has is the size of a grapefruit and we are not entirely sure how this is even going to shrink!
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- September 22, 2016 at 12:58 am
Thanks for sharing your experience! Those are some very strange side effects, at least the one about glue in the mouth!
If you don't mind me asking, did you experience any other pain with the tumors or anything as they shrunk? Or any other strange things that had you thinking the treatment was working? I am not sure what the size of your tumors were, but the one my mom has is the size of a grapefruit and we are not entirely sure how this is even going to shrink!
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- September 22, 2016 at 12:58 am
Thanks for sharing your experience! Those are some very strange side effects, at least the one about glue in the mouth!
If you don't mind me asking, did you experience any other pain with the tumors or anything as they shrunk? Or any other strange things that had you thinking the treatment was working? I am not sure what the size of your tumors were, but the one my mom has is the size of a grapefruit and we are not entirely sure how this is even going to shrink!
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- September 22, 2016 at 2:27 pm
I did not have any pain with my tumors except a sharp pain in my chest. The one in my neck was about ping pong ball size. I do have lots of shoulder pain and limited use of my left arm if it involves my shoulde after surgury.. They had to get a 1 cm clearance around the tumor so they ended up removing some muscle tissue. I did have some sharp pain in my right chest about the same area of one of my tumors. About a week after my first dose the pain went away and has not been back. I think it was due to tumor shrinlage. As of last night my rash is coming back which is ok because it tells me my immune system is still fighting marked cells. It still does not itch or burn which is very odd but I'm not complaining. My outlook going into this was any sign of a side effect was promising as it meant my body was reacting to the drugs.
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- September 24, 2016 at 11:58 pm
Strange. I have read some stories where people have pain from these tumors, but I guess it is different for everyone. My mom had the first infusion on Thursday and it seems that her tumor has already grown to almost double the size. She is having swelling in her feet, which we had to go to the hospital for thinking it was a blood clot (thankfully it wasn't) so we are assuming it is a side effect from the medicine. We aren't sure if her body is reacting to it in this case, but like you said you had side effects 2 weeks or so in so its still very early to tell…The doctor said he wants to see us immediately Monday (even before her first infusion) so I guess I will have an update then. It is just very scary at the moment since we have no idea what to expect.
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- September 24, 2016 at 11:58 pm
Strange. I have read some stories where people have pain from these tumors, but I guess it is different for everyone. My mom had the first infusion on Thursday and it seems that her tumor has already grown to almost double the size. She is having swelling in her feet, which we had to go to the hospital for thinking it was a blood clot (thankfully it wasn't) so we are assuming it is a side effect from the medicine. We aren't sure if her body is reacting to it in this case, but like you said you had side effects 2 weeks or so in so its still very early to tell…The doctor said he wants to see us immediately Monday (even before her first infusion) so I guess I will have an update then. It is just very scary at the moment since we have no idea what to expect.
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- September 24, 2016 at 11:58 pm
Strange. I have read some stories where people have pain from these tumors, but I guess it is different for everyone. My mom had the first infusion on Thursday and it seems that her tumor has already grown to almost double the size. She is having swelling in her feet, which we had to go to the hospital for thinking it was a blood clot (thankfully it wasn't) so we are assuming it is a side effect from the medicine. We aren't sure if her body is reacting to it in this case, but like you said you had side effects 2 weeks or so in so its still very early to tell…The doctor said he wants to see us immediately Monday (even before her first infusion) so I guess I will have an update then. It is just very scary at the moment since we have no idea what to expect.
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- September 22, 2016 at 2:27 pm
I did not have any pain with my tumors except a sharp pain in my chest. The one in my neck was about ping pong ball size. I do have lots of shoulder pain and limited use of my left arm if it involves my shoulde after surgury.. They had to get a 1 cm clearance around the tumor so they ended up removing some muscle tissue. I did have some sharp pain in my right chest about the same area of one of my tumors. About a week after my first dose the pain went away and has not been back. I think it was due to tumor shrinlage. As of last night my rash is coming back which is ok because it tells me my immune system is still fighting marked cells. It still does not itch or burn which is very odd but I'm not complaining. My outlook going into this was any sign of a side effect was promising as it meant my body was reacting to the drugs.
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- September 22, 2016 at 2:27 pm
I did not have any pain with my tumors except a sharp pain in my chest. The one in my neck was about ping pong ball size. I do have lots of shoulder pain and limited use of my left arm if it involves my shoulde after surgury.. They had to get a 1 cm clearance around the tumor so they ended up removing some muscle tissue. I did have some sharp pain in my right chest about the same area of one of my tumors. About a week after my first dose the pain went away and has not been back. I think it was due to tumor shrinlage. As of last night my rash is coming back which is ok because it tells me my immune system is still fighting marked cells. It still does not itch or burn which is very odd but I'm not complaining. My outlook going into this was any sign of a side effect was promising as it meant my body was reacting to the drugs.
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- September 20, 2016 at 2:07 pm
Hi,
I just wanted to say everyone does not get the same side effects. Some get only a few while others get many. Some get the manageable ones while others get the bad ones.
So not doing something because you can get the bad side effects is not a good reason because you may only get a few side effects and they may not be bad at all. Just as we are all individuals so can the side effects be.
Keep in close contact with the doctor and report things as you are finding them and he may change things slightly or give you something to help.
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- September 20, 2016 at 2:07 pm
Hi,
I just wanted to say everyone does not get the same side effects. Some get only a few while others get many. Some get the manageable ones while others get the bad ones.
So not doing something because you can get the bad side effects is not a good reason because you may only get a few side effects and they may not be bad at all. Just as we are all individuals so can the side effects be.
Keep in close contact with the doctor and report things as you are finding them and he may change things slightly or give you something to help.
-
- September 20, 2016 at 2:07 pm
Hi,
I just wanted to say everyone does not get the same side effects. Some get only a few while others get many. Some get the manageable ones while others get the bad ones.
So not doing something because you can get the bad side effects is not a good reason because you may only get a few side effects and they may not be bad at all. Just as we are all individuals so can the side effects be.
Keep in close contact with the doctor and report things as you are finding them and he may change things slightly or give you something to help.
-
- September 20, 2016 at 10:17 pm
I am sorry you and yours are dealing with this. The ipi/nivo combo is an FDA approved treatment option for melanoma patients. There are many, many articles about it, how it works, and side effects on my blog. Use the search bubble if you are interested. See the bottom of this post for a report out of ASCO this year:
Here's some info on GM-CSF(sargramostim):
Hope this helps. I wish you well. Celeste
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- September 20, 2016 at 10:17 pm
I am sorry you and yours are dealing with this. The ipi/nivo combo is an FDA approved treatment option for melanoma patients. There are many, many articles about it, how it works, and side effects on my blog. Use the search bubble if you are interested. See the bottom of this post for a report out of ASCO this year:
Here's some info on GM-CSF(sargramostim):
Hope this helps. I wish you well. Celeste
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- September 20, 2016 at 10:19 pm
Here is a report on mucosal melanoma from ASCO –
Yours, c
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- September 20, 2016 at 10:19 pm
Here is a report on mucosal melanoma from ASCO –
Yours, c
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- September 22, 2016 at 12:55 am
Thanks for both of these! Interesting to read and know the information behind it. We ended up not going with the trial both for time-sake and the side effects. I didn't know about this website so I have been browsing around for more information. Really appreciate the post!
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- September 22, 2016 at 12:55 am
Thanks for both of these! Interesting to read and know the information behind it. We ended up not going with the trial both for time-sake and the side effects. I didn't know about this website so I have been browsing around for more information. Really appreciate the post!
-
- September 22, 2016 at 12:55 am
Thanks for both of these! Interesting to read and know the information behind it. We ended up not going with the trial both for time-sake and the side effects. I didn't know about this website so I have been browsing around for more information. Really appreciate the post!
-
- September 20, 2016 at 10:19 pm
Here is a report on mucosal melanoma from ASCO –
Yours, c
-
- September 20, 2016 at 10:17 pm
I am sorry you and yours are dealing with this. The ipi/nivo combo is an FDA approved treatment option for melanoma patients. There are many, many articles about it, how it works, and side effects on my blog. Use the search bubble if you are interested. See the bottom of this post for a report out of ASCO this year:
Here's some info on GM-CSF(sargramostim):
Hope this helps. I wish you well. Celeste
-
- September 22, 2016 at 1:01 am
Just wanted to give a quick update. The Dr. actually had my moms treatment moved from next week to this week. We are going first thing in the morning to get started. We are very nervous/scared don't know what to expect. Her grapefruit tumor has been casuing so much pain/misery it is hard to function at this point. We are about 2 months in after getting initially diagnosed so we really couldn't wait any longer. Guess biggest fear is the treatment won't work or something else will happen, but we are praying each day that there will be a miracle or something will work out.
Just wanted to say thank you to everyone who has been supportive and writing to help encourage my mom in the difficult time. I apologize about slow responses, it is hard taking care of her and everything going on by myself…too much going on to keep up with!
I will keep everyone updated as I can. God bless!
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- September 22, 2016 at 1:01 am
Just wanted to give a quick update. The Dr. actually had my moms treatment moved from next week to this week. We are going first thing in the morning to get started. We are very nervous/scared don't know what to expect. Her grapefruit tumor has been casuing so much pain/misery it is hard to function at this point. We are about 2 months in after getting initially diagnosed so we really couldn't wait any longer. Guess biggest fear is the treatment won't work or something else will happen, but we are praying each day that there will be a miracle or something will work out.
Just wanted to say thank you to everyone who has been supportive and writing to help encourage my mom in the difficult time. I apologize about slow responses, it is hard taking care of her and everything going on by myself…too much going on to keep up with!
I will keep everyone updated as I can. God bless!
-
- September 22, 2016 at 1:01 am
Just wanted to give a quick update. The Dr. actually had my moms treatment moved from next week to this week. We are going first thing in the morning to get started. We are very nervous/scared don't know what to expect. Her grapefruit tumor has been casuing so much pain/misery it is hard to function at this point. We are about 2 months in after getting initially diagnosed so we really couldn't wait any longer. Guess biggest fear is the treatment won't work or something else will happen, but we are praying each day that there will be a miracle or something will work out.
Just wanted to say thank you to everyone who has been supportive and writing to help encourage my mom in the difficult time. I apologize about slow responses, it is hard taking care of her and everything going on by myself…too much going on to keep up with!
I will keep everyone updated as I can. God bless!
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Tagged: mucosal melanoma
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