dunnhorn

Tricia – I loved your posting about being a # to the doctors.  So very true.  My mother was diagnosed with Stage IIIB melanoma in May from a scalp primary.  Turned out, she had been going to her derm for a year while he was taking off a number of basal cell and she had mentioned this scalp mole to him several times – he said it was nothing.  It started hurting and itching and he injected it with steroids.  3 months later, after it grew he biopsied it, and it was mela and had already spread to 1-2 lymph nodes in her neck.  She had her SNB in Atlanta, and initial removal, then the doc wanted to take more.  He said NO WAY to interferon and made us feel like we were insane for even asking about it.  Yet, some websites say it is the standard of care for stage III.     She wanted a second opinion at MD Anderson, but MD wanted a referral from her doctor.  He wouldn't give the referral.  So, we went to our PCP and he gave the referral and she went out there.    Mom transferred her treatment to MD Anderson – so she has been treated out there since June.  She had more of the area around the primary removed, the lymph nodes from the entire side where there was a positive, and she did the month of high dose in August.  It was very hard on her, but she made it through.  She started the injections in September.  I was thinking "well – if she made it through the high dose, the injections should be a piece of cake."  Wrong-o.   The injections stripped my mother of every bit of her quality of life.  She got to where she had so much fatigue, she couldn't walk.  Food no longer tasted at all good to her.  She pretty much could only eat fruit.   She went off all vitamins – and because she wasn't working, she had muscle atrophy.  In 3 months lost 15 lbs (and she was a regular size person, not heavy.)  She started having tremors – even "brain fog" to the point where she couldn't put sentences together, couldn't carry on a conversation.  Couldn't remember anything, could barely smile.  It was as if we were watching alzheimers come on in fast forward.   They reduced her dosage and gave her ritalin for energy – it didn't work, only served to increase her tremors to the point that she could no longer hold a fork or feed herself.  My dad had to bathe her, help her go to the bathroom.  She had a mini stroke over Thanksgiving – stayed on it a month longer, until the MD docs reviewed her stroke medical records and said no more.  She made it on interferon injections 4 months.  She is out at MD now, and today her derm said no more interferon – just "watch and wait."  I am not crazy about this AT ALL – but it is her life, and I don't know how much I can or even should impress my opinion here.  She is 70 – so they are very concerned about quality of life.  My sisters were very concerned that the very medicine that was supposed to help her was killing her — and it was — but then, I am also VERY scared of her being on nothing to fight this beast.  We are left to prayer, and quarterly follow ups at MD.

Before she made this decision, we were offered several cliniical trials for different medicines.  I think the ones that concerned me the most were the ones that were put on by the drug companies.  I just felt that we were being "recruited" as a guinea pig for new things, and there is no guarantee that Mom would've gotten the medicine.  That was a deal breaker.  In a medical trial for a new med, do you think they would give the 70 year old woman the medicine or the placebo?   We just weren't convinced it was 100% "blind" – there are too many people age 20, 30, 40 who are suffering from this disease.  I can say that the folks at MD Anderson did not push whatsoever.  They mentioned options, but at the end of the day they did not push like the Atlanta doctor did.  I wondered if he received some type of $$ for having people join the study.

I have heard nothing but fantastic things about MD Anderson, and I can say nothing but wonderful things about the doctors and the care offered there.  I spent a week there with my mom when she had her surgery, and I was floored.  I am just putting my total trust in their advice and opinion.  My parents are as well.

So – that is our interferon story.  Like I said, this decision was made today, so we are hoping and praying that we will be one of the happy endings.

All the best to you all as you go on your journey –

worried Daughter in Atlanta

Tricia – I loved your posting about being a # to the doctors.  So very true.  My mother was diagnosed with Stage IIIB melanoma in May from a scalp primary.  Turned out, she had been going to her derm for a year while he was taking off a number of basal cell and she had mentioned this scalp mole to him several times – he said it was nothing.  It started hurting and itching and he injected it with steroids.  3 months later, after it grew he biopsied it, and it was mela and had already spread to 1-2 lymph nodes in her neck.  She had her SNB in Atlanta, and initial removal, then the doc wanted to take more.  He said NO WAY to interferon and made us feel like we were insane for even asking about it.  Yet, some websites say it is the standard of care for stage III.     She wanted a second opinion at MD Anderson, but MD wanted a referral from her doctor.  He wouldn't give the referral.  So, we went to our PCP and he gave the referral and she went out there.    Mom transferred her treatment to MD Anderson – so she has been treated out there since June.  She had more of the area around the primary removed, the lymph nodes from the entire side where there was a positive, and she did the month of high dose in August.  It was very hard on her, but she made it through.  She started the injections in September.  I was thinking "well – if she made it through the high dose, the injections should be a piece of cake."  Wrong-o.   The injections stripped my mother of every bit of her quality of life.  She got to where she had so much fatigue, she couldn't walk.  Food no longer tasted at all good to her.  She pretty much could only eat fruit.   She went off all vitamins – and because she wasn't working, she had muscle atrophy.  In 3 months lost 15 lbs (and she was a regular size person, not heavy.)  She started having tremors – even "brain fog" to the point where she couldn't put sentences together, couldn't carry on a conversation.  Couldn't remember anything, could barely smile.  It was as if we were watching alzheimers come on in fast forward.   They reduced her dosage and gave her ritalin for energy – it didn't work, only served to increase her tremors to the point that she could no longer hold a fork or feed herself.  My dad had to bathe her, help her go to the bathroom.  She had a mini stroke over Thanksgiving – stayed on it a month longer, until the MD docs reviewed her stroke medical records and said no more.  She made it on interferon injections 4 months.  She is out at MD now, and today her derm said no more interferon – just "watch and wait."  I am not crazy about this AT ALL – but it is her life, and I don't know how much I can or even should impress my opinion here.  She is 70 – so they are very concerned about quality of life.  My sisters were very concerned that the very medicine that was supposed to help her was killing her — and it was — but then, I am also VERY scared of her being on nothing to fight this beast.  We are left to prayer, and quarterly follow ups at MD.

Before she made this decision, we were offered several cliniical trials for different medicines.  I think the ones that concerned me the most were the ones that were put on by the drug companies.  I just felt that we were being "recruited" as a guinea pig for new things, and there is no guarantee that Mom would've gotten the medicine.  That was a deal breaker.  In a medical trial for a new med, do you think they would give the 70 year old woman the medicine or the placebo?   We just weren't convinced it was 100% "blind" – there are too many people age 20, 30, 40 who are suffering from this disease.  I can say that the folks at MD Anderson did not push whatsoever.  They mentioned options, but at the end of the day they did not push like the Atlanta doctor did.  I wondered if he received some type of $$ for having people join the study.

I have heard nothing but fantastic things about MD Anderson, and I can say nothing but wonderful things about the doctors and the care offered there.  I spent a week there with my mom when she had her surgery, and I was floored.  I am just putting my total trust in their advice and opinion.  My parents are as well.

So – that is our interferon story.  Like I said, this decision was made today, so we are hoping and praying that we will be one of the happy endings.

All the best to you all as you go on your journey –

worried Daughter in Atlanta