› Forums › General Melanoma Community › My mom and stage 3 or 4 metasized melanoma help
- This topic has 36 replies, 6 voices, and was last updated 8 years, 7 months ago by
keepthefaith11.
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- October 13, 2016 at 6:20 am
Hello and thank you to this forum for the all the information that I have took in.
This is our story and I apologize for any spelling mistakes and or lack of proper writing technics.
About 8 months ago my mom had got what we all thought was a really bad cold/flu. No one was sure including her doctor. At this time she had what would be considered normal flu/cold symptoms. This issue was that this never seamed to go away. Mostly her upper tract symptoms like abnormal amount of mucous and or saliva that was present. During this time until about a month ago she a seen her gp over 14 times always going through the same thing as the gp insisting that she had some sort of cold or sinus infection and mostly dismissing any concerns my mom had. My mom had to be overly proactive with her gp in stressing that she felt something more was going on. Too make this part of the story a bit shorter, about a month a half ago she noticed her lymph node on the left side of her neck was swollen. A clinc doctor was concerned and ordered a ultrasound. After that a cat scan was preformed and results came back as highly likely that there was some sort of cancer. A biopsy was preformed around a month and a half ago. We waited a week for the results. During this time of wating my beloved grandfather and my moms dad had passed away at the age of 97. A few days after his memorial we a learned the results from the biopsy. Well it came back back as Melanoma in her lymph node on her neck. As we all know and can appreciate that this news came as shock and to say very hard to deal with. At this point In time my mom had been losing significant amount of body wieght, about 20 lb over the course of the month and had been noticing her desire to eat decress. She had was having a harder time swallowing food and a that with the lack of desire to eat. After the biopsy results we had more wating to meet with the oncologist in our area (Ottawa, Canada) We were lucky to get a Melanoma specialist. Here is a bit of the report after the first meeting. Again I'm sorry if this post is too long.
the following is from the oncologist report:
Thank you kindly for referring this very nice 63-year-old lady regarding her metastatic melanoma. She is well know to yourself and came along with a very caring and supportive family.
history:
She has been generally healthy all her life. She is fair active, but had no other risk factors for melanoma in terms of exposure or family history. She first developed a lesion over her upper back in 2003; that was excised and she underwent negative sentinel node sampling with no adjuvant treatment felt required.
she has been under regular dermatological surveillance all along. There has been no suspicious or recurrent lesions.
However, she noted a lump in her left side neck at the jugulodigastric area a couple of months ago. It has been increasing rapidly in size, even since her recent CT scan. She had a consult booked with ENT service shortly.
However, her health has been health has been decling with about 27lb of wieght loss in the last couple months. This seams to be due to increasing digestive complaints, having marked dysphasia for solids and thicker fluids.
(I will now just summarize in my own words as to keep this short , although I know this is too long of a post)
They are clearly concerned for my mom health. The oncologist sent out to review for BRAF MUTATIONS as of today no results are in.
we had a gi tract endoscopy which revealed no tumors in the tract but a a closing of her tract and upper air way due to a lesion or tumor behind her tract.
She is on Iv hydration and also had a feeding peg put in. Wieght seamed to stabilized after this.
Ct and bone scan have been done along with MRI.
we met with our oncogist today for the second time today. The tumor on her neck has been growing and she has been having more difficulty with shortness of breath and saliva build up due to her blockage of her gi tract.
we were giving these options today and this is were I need the advice form the fourm.
option 1: Pembrolizumab alone ( can start in 4 days )
option 2: If BRAF mutation: dabrafenib + Trametinb (pills) We still don't know the results of the BRAF TEST
Study: Pembrolizumab + Tvec viruses injections [ this a randomized trail being conducted and would take at least two weeks to start with no gaurentee of getting the Tvec or placebo)
option 3: Nivolumab + ipilmumab. [ more toxic and need to be in good health ] Doctor was on the fence for this option considering my moms current state.
So my question to all the wonderful people on this fourm. Are we headed down the right path. Are there things that we haven't considered that can be important. Treatments that aren't available in Canada but else were that can help?
I want the best for my mom and love her more then anything. I wish I could portray this better in writing. i have also reached out the an alternative cancer clinic in Ottawa that works with naturopathic doctors and traditional we will see them on Wednesday.
Any advice will be so much appreciated and also I would like to put out there too all the forums family's and friends that have affected by this my best wishes and positive thoughts. I hopefully Want to be in a position to offer advice instead of just taking.
thank you so much for taking the time to go through this post. You are all so much appreciated in taking time to help other and for that I will be ever grateful.
Chris
- Replies
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- October 13, 2016 at 12:11 pm
Hi Chris, So sorry you and your family are having such a difficult time with your family’s loss and having to make hard decisions with your mom. Sounds like you don’t have all test results back yet to make a weighted decision but you have some very good options. Sounds like you have access to the latest approved treatments.From my personal experience with my husband he was not BRAF+ but NRAS and trametinib alone worked well for him for 9-10 months. After that pembro alone held progression for almost a full year.
Everyone’s melanoma story is different. The key is finding what might work for your mom. Or finding what might work long enough for technology to come up with something new. Wonderful treatments have come available just in the past few years…ipi, pembro, opdivo and the genomic sequencing testing that sometimes finds a mutation drug match that isn’t even a drug FDA approved for melanoma.
Stay strong and good luck with this battle!!
Cathy
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- October 13, 2016 at 12:11 pm
Hi Chris, So sorry you and your family are having such a difficult time with your family’s loss and having to make hard decisions with your mom. Sounds like you don’t have all test results back yet to make a weighted decision but you have some very good options. Sounds like you have access to the latest approved treatments.From my personal experience with my husband he was not BRAF+ but NRAS and trametinib alone worked well for him for 9-10 months. After that pembro alone held progression for almost a full year.
Everyone’s melanoma story is different. The key is finding what might work for your mom. Or finding what might work long enough for technology to come up with something new. Wonderful treatments have come available just in the past few years…ipi, pembro, opdivo and the genomic sequencing testing that sometimes finds a mutation drug match that isn’t even a drug FDA approved for melanoma.
Stay strong and good luck with this battle!!
Cathy
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- October 14, 2016 at 12:25 am
Thank you Cathy for the positive support and information. I really do appreciate it. We got the MRI full results back today and the oncologist said that everything looked ok. We are still wating on the BRAF test to come in. No treatments have started as of today.
I will try and keep this fourm updated as we go through this
thank you
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- October 14, 2016 at 12:25 am
Thank you Cathy for the positive support and information. I really do appreciate it. We got the MRI full results back today and the oncologist said that everything looked ok. We are still wating on the BRAF test to come in. No treatments have started as of today.
I will try and keep this fourm updated as we go through this
thank you
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- October 14, 2016 at 12:25 am
Thank you Cathy for the positive support and information. I really do appreciate it. We got the MRI full results back today and the oncologist said that everything looked ok. We are still wating on the BRAF test to come in. No treatments have started as of today.
I will try and keep this fourm updated as we go through this
thank you
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- October 13, 2016 at 12:11 pm
Hi Chris, So sorry you and your family are having such a difficult time with your family’s loss and having to make hard decisions with your mom. Sounds like you don’t have all test results back yet to make a weighted decision but you have some very good options. Sounds like you have access to the latest approved treatments.From my personal experience with my husband he was not BRAF+ but NRAS and trametinib alone worked well for him for 9-10 months. After that pembro alone held progression for almost a full year.
Everyone’s melanoma story is different. The key is finding what might work for your mom. Or finding what might work long enough for technology to come up with something new. Wonderful treatments have come available just in the past few years…ipi, pembro, opdivo and the genomic sequencing testing that sometimes finds a mutation drug match that isn’t even a drug FDA approved for melanoma.
Stay strong and good luck with this battle!!
Cathy
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- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
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- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
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- October 14, 2016 at 12:30 am
Hi Patti,
Im sorry to here about your dad as well. It seams like wating for all these test to come in is really one of the hardest parts. I thank you for the Facebook group info. We will defiantly join up. We made our apt to the OICC for this sat. My mom s just worried that the 2 hours will be hard to sit through for the first consiltation.
but I truly believe they can help aswell.
I wish the best for your dad and will stay positive with you
thank you
Chris
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- October 14, 2016 at 12:30 am
Hi Patti,
Im sorry to here about your dad as well. It seams like wating for all these test to come in is really one of the hardest parts. I thank you for the Facebook group info. We will defiantly join up. We made our apt to the OICC for this sat. My mom s just worried that the 2 hours will be hard to sit through for the first consiltation.
but I truly believe they can help aswell.
I wish the best for your dad and will stay positive with you
thank you
Chris
-
- October 14, 2016 at 12:30 am
Hi Patti,
Im sorry to here about your dad as well. It seams like wating for all these test to come in is really one of the hardest parts. I thank you for the Facebook group info. We will defiantly join up. We made our apt to the OICC for this sat. My mom s just worried that the 2 hours will be hard to sit through for the first consiltation.
but I truly believe they can help aswell.
I wish the best for your dad and will stay positive with you
thank you
Chris
-
- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
-
- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
-
- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
-
- October 13, 2016 at 12:39 pm
Hi Chris, I wish I could offer advice but I am new to this too. I also live in Ottawa and my dad had results from a ct scan yesterday that indicate his melanoma has spread all over his abdomen and spots on lungs.We are waiting for a biopsy and results but I am assuming stage iv. So I can't give you answers, but I can give you support as I know how scary this is.This is a great board, but I also wanted to recommend the Facebook group called Melanomamates. It is very active and you get lots of responses quickly. I have also had experience with Ottawa Integrative Cancer Centre. They are wonderful and I can't say enough about them, especially as complimentary treatment for the conventional treatments.
xxx
Patti
-
- October 13, 2016 at 1:12 pm
Hi Chris, I would wait for the braf results to start with. Second, if it is an option based on braf status, many on the forum have used the targeted agents to knock down the size of the tumor then switched to Immunotherapy drugs. I know that the Pd-1 drug Pembro (Keytruda) was approved for stage 4 in Ontario but I though the combination was not available unless you were in a trial. I could be wrong on that but it would be good to have all the cards or options on the table when making a decision. Dr. Song and Dr. Ong are both very good Oncologists at the General Hospital. Best Wishes!!!Ed
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- October 13, 2016 at 1:12 pm
Hi Chris, I would wait for the braf results to start with. Second, if it is an option based on braf status, many on the forum have used the targeted agents to knock down the size of the tumor then switched to Immunotherapy drugs. I know that the Pd-1 drug Pembro (Keytruda) was approved for stage 4 in Ontario but I though the combination was not available unless you were in a trial. I could be wrong on that but it would be good to have all the cards or options on the table when making a decision. Dr. Song and Dr. Ong are both very good Oncologists at the General Hospital. Best Wishes!!!Ed
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- October 14, 2016 at 12:37 am
Hi Ed,
Our oncologist at the general is dr Shedev, he has the most wonderful way of talking with us at our apt. Very positive and inspiring with the new treatments available, Although I always feel like they are rushed to move on to the next patient. Thank you for the information and will try and keep everyone updated.
Chris
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- October 14, 2016 at 12:37 am
Hi Ed,
Our oncologist at the general is dr Shedev, he has the most wonderful way of talking with us at our apt. Very positive and inspiring with the new treatments available, Although I always feel like they are rushed to move on to the next patient. Thank you for the information and will try and keep everyone updated.
Chris
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- October 14, 2016 at 12:37 am
Hi Ed,
Our oncologist at the general is dr Shedev, he has the most wonderful way of talking with us at our apt. Very positive and inspiring with the new treatments available, Although I always feel like they are rushed to move on to the next patient. Thank you for the information and will try and keep everyone updated.
Chris
-
- October 13, 2016 at 1:12 pm
Hi Chris, I would wait for the braf results to start with. Second, if it is an option based on braf status, many on the forum have used the targeted agents to knock down the size of the tumor then switched to Immunotherapy drugs. I know that the Pd-1 drug Pembro (Keytruda) was approved for stage 4 in Ontario but I though the combination was not available unless you were in a trial. I could be wrong on that but it would be good to have all the cards or options on the table when making a decision. Dr. Song and Dr. Ong are both very good Oncologists at the General Hospital. Best Wishes!!!Ed
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- October 13, 2016 at 1:20 pm
I am sorry for what you and your mom are going through. ALL the treatment options your mom was offered are the best that currently exist in melanoma. She is getting what sounds to me as very good care! That should give you some comfort. Of the options you listed –
BRAF combo's work the fastest, though many lose that response over time…some as quickly as 9 months…though others are maintained for years. However, they can be very beneficial in cutting tumor burden dramatically and then have the patient switch to immunotherapy like the pembro or the ipi/nivo combo. But…you must be BRAF positive for the BRAF inhibitors to work.
Pembro (also called Keytruda) is anti-PD1, an immunotherapy that gives about a 40% response rate…but has durable (lasting) responses for many. Minimal side effect. Works more slowly than BRAFi. Very similar drug to nivo (also called Opdivo) with same side effects and response rate.
When you combine nivo with ipi (also called yervoy – a different type of immunotherapy) you get a higher response rate, about 50%, with what are looking to be durable response, but with more side effects than an anti-PD1 product alone due to the ipi.
Intralesionals are a very promising treatment for melanoma. There are several and they are interesting because they work to kill the lesion that they are directly injected in, BUT we have learned they can also kill lesions that happen to be elsewhere in the body, too (referred to in reports as 'by stander lesions'). They are even more promising, per melanoma experts, when combined with immunotherapy, as in the trial your mom was offered. It is a little tricky to particepate in a trial…but if you are sure to get pembro alone…which is a good treatment option….and MIGHT get the T-VEC too…That doesn't seem like a bad choice.
I hope this helps. There is a great deal more info about each of these treatments on my blog if you are interested. Just type the treatment name in the top left search bubble on the page that comes up. I wish you and your mom well. Celeste.
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- October 13, 2016 at 1:20 pm
I am sorry for what you and your mom are going through. ALL the treatment options your mom was offered are the best that currently exist in melanoma. She is getting what sounds to me as very good care! That should give you some comfort. Of the options you listed –
BRAF combo's work the fastest, though many lose that response over time…some as quickly as 9 months…though others are maintained for years. However, they can be very beneficial in cutting tumor burden dramatically and then have the patient switch to immunotherapy like the pembro or the ipi/nivo combo. But…you must be BRAF positive for the BRAF inhibitors to work.
Pembro (also called Keytruda) is anti-PD1, an immunotherapy that gives about a 40% response rate…but has durable (lasting) responses for many. Minimal side effect. Works more slowly than BRAFi. Very similar drug to nivo (also called Opdivo) with same side effects and response rate.
When you combine nivo with ipi (also called yervoy – a different type of immunotherapy) you get a higher response rate, about 50%, with what are looking to be durable response, but with more side effects than an anti-PD1 product alone due to the ipi.
Intralesionals are a very promising treatment for melanoma. There are several and they are interesting because they work to kill the lesion that they are directly injected in, BUT we have learned they can also kill lesions that happen to be elsewhere in the body, too (referred to in reports as 'by stander lesions'). They are even more promising, per melanoma experts, when combined with immunotherapy, as in the trial your mom was offered. It is a little tricky to particepate in a trial…but if you are sure to get pembro alone…which is a good treatment option….and MIGHT get the T-VEC too…That doesn't seem like a bad choice.
I hope this helps. There is a great deal more info about each of these treatments on my blog if you are interested. Just type the treatment name in the top left search bubble on the page that comes up. I wish you and your mom well. Celeste.
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- October 14, 2016 at 12:41 am
Hi Celeste.
Your information was very valuable informative and helpful. There is so much to take in when your new to this and I appreciate all the help and info form everyone. I will be looking forward to reading your blog and again thank you for taking the time to provide this information. It truly does help to be as informed as possible
Chris
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- October 14, 2016 at 12:41 am
Hi Celeste.
Your information was very valuable informative and helpful. There is so much to take in when your new to this and I appreciate all the help and info form everyone. I will be looking forward to reading your blog and again thank you for taking the time to provide this information. It truly does help to be as informed as possible
Chris
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- October 14, 2016 at 12:41 am
Hi Celeste.
Your information was very valuable informative and helpful. There is so much to take in when your new to this and I appreciate all the help and info form everyone. I will be looking forward to reading your blog and again thank you for taking the time to provide this information. It truly does help to be as informed as possible
Chris
-
- October 13, 2016 at 1:20 pm
I am sorry for what you and your mom are going through. ALL the treatment options your mom was offered are the best that currently exist in melanoma. She is getting what sounds to me as very good care! That should give you some comfort. Of the options you listed –
BRAF combo's work the fastest, though many lose that response over time…some as quickly as 9 months…though others are maintained for years. However, they can be very beneficial in cutting tumor burden dramatically and then have the patient switch to immunotherapy like the pembro or the ipi/nivo combo. But…you must be BRAF positive for the BRAF inhibitors to work.
Pembro (also called Keytruda) is anti-PD1, an immunotherapy that gives about a 40% response rate…but has durable (lasting) responses for many. Minimal side effect. Works more slowly than BRAFi. Very similar drug to nivo (also called Opdivo) with same side effects and response rate.
When you combine nivo with ipi (also called yervoy – a different type of immunotherapy) you get a higher response rate, about 50%, with what are looking to be durable response, but with more side effects than an anti-PD1 product alone due to the ipi.
Intralesionals are a very promising treatment for melanoma. There are several and they are interesting because they work to kill the lesion that they are directly injected in, BUT we have learned they can also kill lesions that happen to be elsewhere in the body, too (referred to in reports as 'by stander lesions'). They are even more promising, per melanoma experts, when combined with immunotherapy, as in the trial your mom was offered. It is a little tricky to particepate in a trial…but if you are sure to get pembro alone…which is a good treatment option….and MIGHT get the T-VEC too…That doesn't seem like a bad choice.
I hope this helps. There is a great deal more info about each of these treatments on my blog if you are interested. Just type the treatment name in the top left search bubble on the page that comes up. I wish you and your mom well. Celeste.
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- October 13, 2016 at 4:47 pm
Hi Chris, I am so sorry about your mom and I can completely relate. My mom had stage 3, triple negative breast cancer 15 years ago. Thankfully she got through it and is still here today. Now my dad has stage 4 melanoma with tumors in his brain. It is a very scary place to be but I always found in both cases, that being proactive and researching helped me control the fear. It made me feel like I was doing something at least. This is what you seem to be doing as well.I also suggest you wait for the braf status. In your mom’s case, since she is having some pretty severe symptoms, it might be a good idea to start her on the Inhibitors should she be braf positive. This will quickly knock down the tumor so she can get some relief. Some doctors seem to be willing to switch over to immunotherapy before the positive effects of the inhibitors fade. The issue being that if you wait too long to switch the cancer seems to get an extra boost and become more aggressive.
If she is not braf positive immunotherapy would be the way to go. The combo is highly toxic so it might be better to start her on pembro alone since she is in pretty rough shape right now. I am glad you are with a melanoma specialist who sounds like he knows what he’s talking about.
I know this is a rough time for you. But as you get into treatment and things are actually getting done, it does seem to get a bit easier. The waiting for treatment to start is the worst.
I will keep you and your mom in my thoughts.
Annie
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- October 13, 2016 at 4:47 pm
Hi Chris, I am so sorry about your mom and I can completely relate. My mom had stage 3, triple negative breast cancer 15 years ago. Thankfully she got through it and is still here today. Now my dad has stage 4 melanoma with tumors in his brain. It is a very scary place to be but I always found in both cases, that being proactive and researching helped me control the fear. It made me feel like I was doing something at least. This is what you seem to be doing as well.I also suggest you wait for the braf status. In your mom’s case, since she is having some pretty severe symptoms, it might be a good idea to start her on the Inhibitors should she be braf positive. This will quickly knock down the tumor so she can get some relief. Some doctors seem to be willing to switch over to immunotherapy before the positive effects of the inhibitors fade. The issue being that if you wait too long to switch the cancer seems to get an extra boost and become more aggressive.
If she is not braf positive immunotherapy would be the way to go. The combo is highly toxic so it might be better to start her on pembro alone since she is in pretty rough shape right now. I am glad you are with a melanoma specialist who sounds like he knows what he’s talking about.
I know this is a rough time for you. But as you get into treatment and things are actually getting done, it does seem to get a bit easier. The waiting for treatment to start is the worst.
I will keep you and your mom in my thoughts.
Annie
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- October 14, 2016 at 12:48 am
Hi Annie
Your post took so many of my thoughts and feelings and you wrote them exactly. This is a very scary place to be but trying to be proactive seams to help and you are absoluty right about the wating for treatment. That is what I find my mom is having the hardest time with too.
thank you for the great post and information. I'm very happy to here your mom has been doing so well and seams to be a very strong fighter. I'm so sorry that you have to go through this again with your dad and i will be thinking of him as well.
Thankn you to everyone who has replied and provided us with so much information, love, positivity, and support.
Chris
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- October 14, 2016 at 12:48 am
Hi Annie
Your post took so many of my thoughts and feelings and you wrote them exactly. This is a very scary place to be but trying to be proactive seams to help and you are absoluty right about the wating for treatment. That is what I find my mom is having the hardest time with too.
thank you for the great post and information. I'm very happy to here your mom has been doing so well and seams to be a very strong fighter. I'm so sorry that you have to go through this again with your dad and i will be thinking of him as well.
Thankn you to everyone who has replied and provided us with so much information, love, positivity, and support.
Chris
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- October 14, 2016 at 12:48 am
Hi Annie
Your post took so many of my thoughts and feelings and you wrote them exactly. This is a very scary place to be but trying to be proactive seams to help and you are absoluty right about the wating for treatment. That is what I find my mom is having the hardest time with too.
thank you for the great post and information. I'm very happy to here your mom has been doing so well and seams to be a very strong fighter. I'm so sorry that you have to go through this again with your dad and i will be thinking of him as well.
Thankn you to everyone who has replied and provided us with so much information, love, positivity, and support.
Chris
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- October 16, 2016 at 2:12 pm
Thank you Chris. Keep us updated on your mom. Thinking of you.Annie
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- October 16, 2016 at 2:12 pm
Thank you Chris. Keep us updated on your mom. Thinking of you.Annie
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- October 16, 2016 at 2:12 pm
Thank you Chris. Keep us updated on your mom. Thinking of you.Annie
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- October 13, 2016 at 4:47 pm
Hi Chris, I am so sorry about your mom and I can completely relate. My mom had stage 3, triple negative breast cancer 15 years ago. Thankfully she got through it and is still here today. Now my dad has stage 4 melanoma with tumors in his brain. It is a very scary place to be but I always found in both cases, that being proactive and researching helped me control the fear. It made me feel like I was doing something at least. This is what you seem to be doing as well.I also suggest you wait for the braf status. In your mom’s case, since she is having some pretty severe symptoms, it might be a good idea to start her on the Inhibitors should she be braf positive. This will quickly knock down the tumor so she can get some relief. Some doctors seem to be willing to switch over to immunotherapy before the positive effects of the inhibitors fade. The issue being that if you wait too long to switch the cancer seems to get an extra boost and become more aggressive.
If she is not braf positive immunotherapy would be the way to go. The combo is highly toxic so it might be better to start her on pembro alone since she is in pretty rough shape right now. I am glad you are with a melanoma specialist who sounds like he knows what he’s talking about.
I know this is a rough time for you. But as you get into treatment and things are actually getting done, it does seem to get a bit easier. The waiting for treatment to start is the worst.
I will keep you and your mom in my thoughts.
Annie
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