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- This topic has 12 replies, 4 voices, and was last updated 8 years, 11 months ago by
Bubbles.
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- May 16, 2015 at 8:53 am
My wife of 25 years recently passed away from melanoma. She went to her family doctor with a large new thick black lesion on her face. He sent her to an Ear Nose and Throat (ENT) doctor to have it removed. We waited for 3 months to get in to this appointment. He removed it and 2 weeks later told us it was melanoma. It took another month to get in to an oncologist. The oncologist referred us to another ENT who did a radical lymphectomy (positive for 13 lymph nodes). At this point it was 6 months from the time she called for an appoinment from her family doctor until the day of surgery. They waited two months to heal from surgery and decided to do 30 treatments of radiation, which made her so sick and lost almost 40lbs unable to eat due to mouth sores). They started a Gtube to do feedings. Now 10months from her initial appointment they decide to start one dose of dacarbazine then Vervoy x 3 doses. Asked several times for a brain MRI but told they wouldn't do it if there were no symptoms. She told them several times of numbness and tingling in her hands and I told the doctor that her personality was changing. She died 2 weeks after the third Vervoy dose from a bleeding brain turmor-9 months from the time of diagnosis. My question-we went to a melanoma specialist, why did they wait 6 months before they started systemic therapy on a metastatic melanoma? Why did they do radiation first? I truly believe that there must have been a better way to manage her treatment. In the effort of improving care for future people living with melanoma what could have been done different (aside from having a family doctor that made her wait for 3 months for a biopsy for something that clearly appeared like melanoma)? Thanks everyone for your help. It has been a fast and difficult ride.
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- May 16, 2015 at 4:30 pm
I am so sorry and sad for this tragedy. My thoughts and prayers are with you and your family during this difficult time.
Melanoma patients should be treated as patients with stroke or heart attacks: being treated once they step into the clinic. When my husband felt his pain grew fast and nobody in the clinic cared but told him to wait for the appointment a month later, he almost had to pound the desk to get the surgery. I really hope the medical system will improve soon.
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- May 16, 2015 at 4:30 pm
I am so sorry and sad for this tragedy. My thoughts and prayers are with you and your family during this difficult time.
Melanoma patients should be treated as patients with stroke or heart attacks: being treated once they step into the clinic. When my husband felt his pain grew fast and nobody in the clinic cared but told him to wait for the appointment a month later, he almost had to pound the desk to get the surgery. I really hope the medical system will improve soon.
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- May 16, 2015 at 4:30 pm
I am so sorry and sad for this tragedy. My thoughts and prayers are with you and your family during this difficult time.
Melanoma patients should be treated as patients with stroke or heart attacks: being treated once they step into the clinic. When my husband felt his pain grew fast and nobody in the clinic cared but told him to wait for the appointment a month later, he almost had to pound the desk to get the surgery. I really hope the medical system will improve soon.
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- May 16, 2015 at 4:57 pm
My heart goes out to you, I am so sorry for your loss and in such a difficult way. I pray for your heart to be healed and freedom from the pain of second guessing the path you took. There is so much to know and learn about melanoma and no way for us to know exactly how ours will respond and progress. So many have quick progression that there is no time to spend researching very much, so we must trust and rely on those in the medical field to direct our path. I too, was misguided, being diagnosed with a blood blister and told to leave it alone, which grew quickly and fell off! 5 years later being diagnosed with metastatic melanoma with no primary, but I knew I had a primary!
Please try to redirect your energy and focus on all the beautiful memories of the 25 years you had with your lovely wife. There is nothing that can be done to change the course of her medical treatment and who knows, if a different path was chosen, perhaps it would have been a more difficult journey. We all share your burden and understand your sorrow. May all the beautiful days you shared together be your comfort and inspire you to live life fully in honor or your sweet wife.
Take care,
Swanee
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- May 16, 2015 at 4:57 pm
My heart goes out to you, I am so sorry for your loss and in such a difficult way. I pray for your heart to be healed and freedom from the pain of second guessing the path you took. There is so much to know and learn about melanoma and no way for us to know exactly how ours will respond and progress. So many have quick progression that there is no time to spend researching very much, so we must trust and rely on those in the medical field to direct our path. I too, was misguided, being diagnosed with a blood blister and told to leave it alone, which grew quickly and fell off! 5 years later being diagnosed with metastatic melanoma with no primary, but I knew I had a primary!
Please try to redirect your energy and focus on all the beautiful memories of the 25 years you had with your lovely wife. There is nothing that can be done to change the course of her medical treatment and who knows, if a different path was chosen, perhaps it would have been a more difficult journey. We all share your burden and understand your sorrow. May all the beautiful days you shared together be your comfort and inspire you to live life fully in honor or your sweet wife.
Take care,
Swanee
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- May 16, 2015 at 4:57 pm
My heart goes out to you, I am so sorry for your loss and in such a difficult way. I pray for your heart to be healed and freedom from the pain of second guessing the path you took. There is so much to know and learn about melanoma and no way for us to know exactly how ours will respond and progress. So many have quick progression that there is no time to spend researching very much, so we must trust and rely on those in the medical field to direct our path. I too, was misguided, being diagnosed with a blood blister and told to leave it alone, which grew quickly and fell off! 5 years later being diagnosed with metastatic melanoma with no primary, but I knew I had a primary!
Please try to redirect your energy and focus on all the beautiful memories of the 25 years you had with your lovely wife. There is nothing that can be done to change the course of her medical treatment and who knows, if a different path was chosen, perhaps it would have been a more difficult journey. We all share your burden and understand your sorrow. May all the beautiful days you shared together be your comfort and inspire you to live life fully in honor or your sweet wife.
Take care,
Swanee
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- May 16, 2015 at 6:10 pm
Wow. That is very sad. I'm not quite sure what to say. My first treatment was radiation but that was because of the close proximity of that t10 tumor to my spinal cord. My first doc was an old time regular cancer doc. He was very much about urgency. I had no idea why at the time but he asked if I was having headaches and I said a little sometimes and right away that day I had a head MRI. Supposedly came back clear but looking back I can see 2 of the 3 I've had in my skull. Also a biopsy surgery on the t10 the next day and diagnosis the next and started on radiation. A pet was done a few days later as well as a braf test. He also lined up a trial that never happened and a melanoma specialist to see. So for a non melanoma doc I now think he did excellent. I think when we think of a melanoma specialist they know the urgency of melanoma. Or at least should. This stuff as you found out the hard awful way can grow and spread like crazy.
im no doc of course but I imagine they thought they were dealing with an early stage of melanoma. Thus surgery followed by radiation might get it all before it can spread. Obviously getting that bad on radiation was awful. I assume before surgery they did a pet scan? That probably came back clear except the areas where it doesn't show like the brain thus an MRI. So in my opinion after the biopsy a full pet and a head MRI should have been done. Probably should become some type of standard.
I'm going crazy trying to get some treatment to my t10 that's at my spinal cord again. Trying to hear from 3 docs. Also trying to get into a good trial. So yes I have lots of regrets how my treatments have been but fortunately now thanks to the folks on this site I know lots more.
Im sorry and sad it didn't turn out better for your wife.
Artie
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- May 16, 2015 at 6:10 pm
Wow. That is very sad. I'm not quite sure what to say. My first treatment was radiation but that was because of the close proximity of that t10 tumor to my spinal cord. My first doc was an old time regular cancer doc. He was very much about urgency. I had no idea why at the time but he asked if I was having headaches and I said a little sometimes and right away that day I had a head MRI. Supposedly came back clear but looking back I can see 2 of the 3 I've had in my skull. Also a biopsy surgery on the t10 the next day and diagnosis the next and started on radiation. A pet was done a few days later as well as a braf test. He also lined up a trial that never happened and a melanoma specialist to see. So for a non melanoma doc I now think he did excellent. I think when we think of a melanoma specialist they know the urgency of melanoma. Or at least should. This stuff as you found out the hard awful way can grow and spread like crazy.
im no doc of course but I imagine they thought they were dealing with an early stage of melanoma. Thus surgery followed by radiation might get it all before it can spread. Obviously getting that bad on radiation was awful. I assume before surgery they did a pet scan? That probably came back clear except the areas where it doesn't show like the brain thus an MRI. So in my opinion after the biopsy a full pet and a head MRI should have been done. Probably should become some type of standard.
I'm going crazy trying to get some treatment to my t10 that's at my spinal cord again. Trying to hear from 3 docs. Also trying to get into a good trial. So yes I have lots of regrets how my treatments have been but fortunately now thanks to the folks on this site I know lots more.
Im sorry and sad it didn't turn out better for your wife.
Artie
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- May 16, 2015 at 6:10 pm
Wow. That is very sad. I'm not quite sure what to say. My first treatment was radiation but that was because of the close proximity of that t10 tumor to my spinal cord. My first doc was an old time regular cancer doc. He was very much about urgency. I had no idea why at the time but he asked if I was having headaches and I said a little sometimes and right away that day I had a head MRI. Supposedly came back clear but looking back I can see 2 of the 3 I've had in my skull. Also a biopsy surgery on the t10 the next day and diagnosis the next and started on radiation. A pet was done a few days later as well as a braf test. He also lined up a trial that never happened and a melanoma specialist to see. So for a non melanoma doc I now think he did excellent. I think when we think of a melanoma specialist they know the urgency of melanoma. Or at least should. This stuff as you found out the hard awful way can grow and spread like crazy.
im no doc of course but I imagine they thought they were dealing with an early stage of melanoma. Thus surgery followed by radiation might get it all before it can spread. Obviously getting that bad on radiation was awful. I assume before surgery they did a pet scan? That probably came back clear except the areas where it doesn't show like the brain thus an MRI. So in my opinion after the biopsy a full pet and a head MRI should have been done. Probably should become some type of standard.
I'm going crazy trying to get some treatment to my t10 that's at my spinal cord again. Trying to hear from 3 docs. Also trying to get into a good trial. So yes I have lots of regrets how my treatments have been but fortunately now thanks to the folks on this site I know lots more.
Im sorry and sad it didn't turn out better for your wife.
Artie
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