K in LA

I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site.  It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved.  To the care givers left behind more recently than I have been: 

Please look after yourselves.  

People often don't know how they can help you so tell them what you need.

Don't be surprised if some folks you'd thought of as friends, drift away.  Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.

One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.

Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).

Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:

http://www.melapp.net/

Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.

I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site.  It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved.  To the care givers left behind more recently than I have been: 

Please look after yourselves.  

People often don't know how they can help you so tell them what you need.

Don't be surprised if some folks you'd thought of as friends, drift away.  Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.

One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.

Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).

Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:

http://www.melapp.net/

Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.

I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site.  It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved.  To the care givers left behind more recently than I have been: 

Please look after yourselves.  

People often don't know how they can help you so tell them what you need.

Don't be surprised if some folks you'd thought of as friends, drift away.  Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.

One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.

Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).

Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:

http://www.melapp.net/

Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.

Jill,

I know exactly how you feel.  I was my husband/best friend/soul mate's caregiver during his 21/2 year fight against this awful disease & lost him to it at 4:10 am on June 19th.  Take comfort in the knowledge of how very much he loved you & how hard he fought to stay here with you & in the fact that you were able to say everything you wanted to say to each other.   This is a totally different, and at times very lonely, battle.  Sometimes the only thing that keeps me going is that I promised Tony I would, & because there are so many things I want to do to honor his memory.  

So, if this is of any help, here's what I've learned so far:

Find a grief support group for people your age-group who've lost their spouses  because, no matter how well-meaning people are, only those in this same boat truly understand what you're going through.  

Never leave the house without tissues — as you probably already know, the grief will suddenly overwhelm you without warning.  

Trust your gut-instinct & do whatever you need to do to get through each day — your subconcious mind will protect you from a lot if you let it — although it does get a bit overworked in doing so & leave you rather forgetful — I've had to start writing lists & always leaving keys in exactly the same place.  

Get a lot of rest: it's hard to sleep properly, and everyday things can suddenly become exhausting.  You did everything you could to take care of Eric, now it's time to let the people who love you take care of you.  Don't be afraid to ask for help from them, and, just as importantly, to tell them if what they're saying/doing isn't what you need. 

I envision it as reaching a fork in the road on our journey where he had to go one way & I had to go the other, but eventually we'll meet up again.  It's just a real slog to make this part of the journey without your travelling companion so I wish you all the best in taking these first steps along this new path…

Jill,

I know exactly how you feel.  I was my husband/best friend/soul mate's caregiver during his 21/2 year fight against this awful disease & lost him to it at 4:10 am on June 19th.  Take comfort in the knowledge of how very much he loved you & how hard he fought to stay here with you & in the fact that you were able to say everything you wanted to say to each other.   This is a totally different, and at times very lonely, battle.  Sometimes the only thing that keeps me going is that I promised Tony I would, & because there are so many things I want to do to honor his memory.  

So, if this is of any help, here's what I've learned so far:

Find a grief support group for people your age-group who've lost their spouses  because, no matter how well-meaning people are, only those in this same boat truly understand what you're going through.  

Never leave the house without tissues — as you probably already know, the grief will suddenly overwhelm you without warning.  

Trust your gut-instinct & do whatever you need to do to get through each day — your subconcious mind will protect you from a lot if you let it — although it does get a bit overworked in doing so & leave you rather forgetful — I've had to start writing lists & always leaving keys in exactly the same place.  

Get a lot of rest: it's hard to sleep properly, and everyday things can suddenly become exhausting.  You did everything you could to take care of Eric, now it's time to let the people who love you take care of you.  Don't be afraid to ask for help from them, and, just as importantly, to tell them if what they're saying/doing isn't what you need. 

I envision it as reaching a fork in the road on our journey where he had to go one way & I had to go the other, but eventually we'll meet up again.  It's just a real slog to make this part of the journey without your travelling companion so I wish you all the best in taking these first steps along this new path…

If you haven't done so already, you may also want to look at a more "systemic" treatment like the PLX drug if you're BRAF positive and/or Ipi — there are tons of postings on the board for both of these plus other treatments

I don't know if these Drs are radiology oncologists or melanoma specialists; if they are the former rather than the latter then you need to see someone specializing in melanoma.  

If you haven't done so already, you may also want to look at a more "systemic" treatment like the PLX drug if you're BRAF positive and/or Ipi — there are tons of postings on the board for both of these plus other treatments

I don't know if these Drs are radiology oncologists or melanoma specialists; if they are the former rather than the latter then you need to see someone specializing in melanoma.  

Thanks, Douglas, for posting this roll call request.  I've been trawling the board since my husband started IPI looking for posting about the ipi experience & responders!!!

My husvband is stage iV & psrt of the "compassionate use" expansion.  He is due to get infusion #4 next week — BTW, both his oncologist & BMS have confirmed that this dose is still free to him as a compassionate use enrollee even though it's more thatn 30 days sfter the FDA approved Yervoy (I haven't yet crossed the bridge of what'll happen if he needs future doses –we have a HIPAA  health ins. policy, a PPO which has so far coughed up for all "FDA approved" melanoma treatments, including the v.expensive hospital administered IL-2) anyway, back to his IPI experence so far:

My husband is Braf positive & was one of the longest people on the phase 2 trial for the Braf inhibitor, PLX, and at Xmas 2010 had very little cancer left: a few sub-q's and a teeny tumor in the adrenal gland.  He'd had radiation/ablation  for a lung tumor (the oldest & biggest melanoma) which had stopped reacting to the PLX drug, in the summer of 2010 & the Drs thought it was necrotizing.  In retrospect I wish we'd ditched PLX & switched to IPI right then as the rest of his melanoma cells subsequently found a way round the Braf inhibitor, with an unusual RAS mutation.  Previously, his cancer growth had always been pretty sluggish, but this time it took off like wildfire & by the time he'd done the 28 day "wash-out" befoe IPI, he was getting new skin lesions & sub-q's every day.  plus he had 3 brain nmets (treated by gamma knife the week before he started IPI).

The first dose of IPI pretty much put the brakes on (much to our & the Dr's relief) & temporarily some of lesions went very purple & angry, some dried out & bits dropped off,  & some sub-q's went softer.  He hasn't noticed anything so dramatic post-doses 2 or 3.  I'd say things are still growing, but at a very slow rate &, like some of the other posters, he's got a few new sub-q's.  This week one or two of the skin lesions look like they're drying out again & a couple of the sub-qs look "less healthy" (his words, not mine — I think "less robust" is preferable!).

He always has side effect "issues" — until this year the side effects have always damaged his health far more than the cancer & he's not been able to work since April 2009 when we kicked things off with IL-2.  Until then he was a fit, healthy guy who worked out almost daily, didn't smoke, etc.  

So far, his IPI side effects have been:

1. Horrendous fatigue: in bed 12 hours every night (although not asleep all of that time — the painful tumors on his scalp wake him up a lot) & juest sitting watching TV & reading all day.  He has no energy to even go to friends for dinner; on a good day we make it outside for a walk after dinner (the IPI, like PLX has made him sun-sensitive).  We're waiting for the Dr to let us know his adrenal function & vit D test results.

2. Stomach pain & really bad acid indigestion — he's always had a bit of an acid problem but it was exacerbated by chemo in 2009 (not the usual chemo treatments, a but a big dose to remove his immune system before they gave him a new one as part of another clinical trial) we'd got the remaining silent acid reflux under control with daily famatodine, but now I'm having to be very careful what I feed him or the acid gets so bad, he'll have a coughing fit & eventually throw up.

3. Nausea (without actually throwing up — that always seems to be caused by the acid attacks) — the anti-nausea meds prescibed for it (prochloroperazine) doesn't work.

4. Fever — lots of hot & cold flashes — these started the night of dose 1 & have continued — thankfully nowhere near as violent as they were with IL-2 . 

He had the PLX rash but to date hasn't had this awful itchy IPI rash others have described  — only some itching in some of the tumors on his scalp. and he hasn't had the diarrhea — until recently I'd been giving him Colpermin, a British OTC treatment for irritable bowel syndrome (it's capsules of peppermint oil that release into the intestines) but we stopped last week just in case it was doing something to "up" the acid in his stomach.

Think that all….

Thanks, Douglas, for posting this roll call request.  I've been trawling the board since my husband started IPI looking for posting about the ipi experience & responders!!!

My husvband is stage iV & psrt of the "compassionate use" expansion.  He is due to get infusion #4 next week — BTW, both his oncologist & BMS have confirmed that this dose is still free to him as a compassionate use enrollee even though it's more thatn 30 days sfter the FDA approved Yervoy (I haven't yet crossed the bridge of what'll happen if he needs future doses –we have a HIPAA  health ins. policy, a PPO which has so far coughed up for all "FDA approved" melanoma treatments, including the v.expensive hospital administered IL-2) anyway, back to his IPI experence so far:

My husband is Braf positive & was one of the longest people on the phase 2 trial for the Braf inhibitor, PLX, and at Xmas 2010 had very little cancer left: a few sub-q's and a teeny tumor in the adrenal gland.  He'd had radiation/ablation  for a lung tumor (the oldest & biggest melanoma) which had stopped reacting to the PLX drug, in the summer of 2010 & the Drs thought it was necrotizing.  In retrospect I wish we'd ditched PLX & switched to IPI right then as the rest of his melanoma cells subsequently found a way round the Braf inhibitor, with an unusual RAS mutation.  Previously, his cancer growth had always been pretty sluggish, but this time it took off like wildfire & by the time he'd done the 28 day "wash-out" befoe IPI, he was getting new skin lesions & sub-q's every day.  plus he had 3 brain nmets (treated by gamma knife the week before he started IPI).

The first dose of IPI pretty much put the brakes on (much to our & the Dr's relief) & temporarily some of lesions went very purple & angry, some dried out & bits dropped off,  & some sub-q's went softer.  He hasn't noticed anything so dramatic post-doses 2 or 3.  I'd say things are still growing, but at a very slow rate &, like some of the other posters, he's got a few new sub-q's.  This week one or two of the skin lesions look like they're drying out again & a couple of the sub-qs look "less healthy" (his words, not mine — I think "less robust" is preferable!).

He always has side effect "issues" — until this year the side effects have always damaged his health far more than the cancer & he's not been able to work since April 2009 when we kicked things off with IL-2.  Until then he was a fit, healthy guy who worked out almost daily, didn't smoke, etc.  

So far, his IPI side effects have been:

1. Horrendous fatigue: in bed 12 hours every night (although not asleep all of that time — the painful tumors on his scalp wake him up a lot) & juest sitting watching TV & reading all day.  He has no energy to even go to friends for dinner; on a good day we make it outside for a walk after dinner (the IPI, like PLX has made him sun-sensitive).  We're waiting for the Dr to let us know his adrenal function & vit D test results.

2. Stomach pain & really bad acid indigestion — he's always had a bit of an acid problem but it was exacerbated by chemo in 2009 (not the usual chemo treatments, a but a big dose to remove his immune system before they gave him a new one as part of another clinical trial) we'd got the remaining silent acid reflux under control with daily famatodine, but now I'm having to be very careful what I feed him or the acid gets so bad, he'll have a coughing fit & eventually throw up.

3. Nausea (without actually throwing up — that always seems to be caused by the acid attacks) — the anti-nausea meds prescibed for it (prochloroperazine) doesn't work.

4. Fever — lots of hot & cold flashes — these started the night of dose 1 & have continued — thankfully nowhere near as violent as they were with IL-2 . 

He had the PLX rash but to date hasn't had this awful itchy IPI rash others have described  — only some itching in some of the tumors on his scalp. and he hasn't had the diarrhea — until recently I'd been giving him Colpermin, a British OTC treatment for irritable bowel syndrome (it's capsules of peppermint oil that release into the intestines) but we stopped last week just in case it was doing something to "up" the acid in his stomach.

Think that all….

Pretty sure my husband had this done last summer at UCLA — part of a clinical trial that combined ablation with stereotactic radiation — to treat a met. in the lung that was too close to major organs to be treated by the usual full dose of radiation alone.

The ablation was done under local anaestetic so he was awake to hold his breath at the surgeon's direction.  It WAS painful — not least becuase my husband has a tendency to undersell the level of pain he's experiencing (it turned out his 3 or 4 was everyone else's 6 or 7) so wasn't given enough morphine!!!!!

This clinical trial, if it is still open, is normally used for lung cancer & I had to fight our insurers to get it approved.  Fortunately, California law requires insurance companies to fund any clinical trial for cancer if the insured's doctor deems it "medically necessary" — this is an excellent brochure from UC Davis on the issue.  I don't know what the situation is in other states.

http://www.ucdmc.ucdavis.edu/cancer/clinical_trials/thebigc/pdfs/CC_Clinical_Law_Trial.pdf

Pretty sure my husband had this done last summer at UCLA — part of a clinical trial that combined ablation with stereotactic radiation — to treat a met. in the lung that was too close to major organs to be treated by the usual full dose of radiation alone.

The ablation was done under local anaestetic so he was awake to hold his breath at the surgeon's direction.  It WAS painful — not least becuase my husband has a tendency to undersell the level of pain he's experiencing (it turned out his 3 or 4 was everyone else's 6 or 7) so wasn't given enough morphine!!!!!

This clinical trial, if it is still open, is normally used for lung cancer & I had to fight our insurers to get it approved.  Fortunately, California law requires insurance companies to fund any clinical trial for cancer if the insured's doctor deems it "medically necessary" — this is an excellent brochure from UC Davis on the issue.  I don't know what the situation is in other states.

http://www.ucdmc.ucdavis.edu/cancer/clinical_trials/thebigc/pdfs/CC_Clinical_Law_Trial.pdf