› Forums › General Melanoma Community › Melanoma Return – 7 METS – Can’t breathe !
- This topic has 18 replies, 4 voices, and was last updated 13 years, 9 months ago by
KRob.
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- April 17, 2012 at 5:00 pm
It's been a LONGGGG time sine my hubby and I have been here. He has been free of melanoma since Oct. 1999 when he had a melanoma removed from his right ear lobe ! They cut the lobe off – did sentinel node biopsy, which was clean and we went to M. D. Anderson for 8 years. We were released to our Doc here upon our own request and he has done an excellent job of caring for him.
It's been a LONGGGG time sine my hubby and I have been here. He has been free of melanoma since Oct. 1999 when he had a melanoma removed from his right ear lobe ! They cut the lobe off – did sentinel node biopsy, which was clean and we went to M. D. Anderson for 8 years. We were released to our Doc here upon our own request and he has done an excellent job of caring for him.
On Feb. 29th, Wayne (the patient) had his physical – excellent helath – great blood work – cholesterol a little high. Doc suggested he might want to do Calcium scan because most of his family dropped dead from heart attacks. On a whim, he did. The Doc called……told him he had a good bit of plaque, but the problem was no longer that. There was a Shadow on his left lung and he thought they should see about it pronto. Long story short – had the needle biopsy and it was MELANOMA ! Headed for M. D. ANDERSON as soon as we could get there after test had been sent yada yada. Did PET SCAN – BRAIN MRI – Blood. 7 METS ! 2 in left lung – 1 in abdomen – 1 on right leg – 1 in spine at L-5 – 1 in liver – and I lost my mind on the 7th one. I'm pretty crazy right now.
I don't have to tell you what we're going through. We will go back to M. D. on Monday to see Doc one more time, and start ZELBRAF ! The Brain MRI was clean so because of that they decided not to do Bio-chem which was the original plan. We're happy about that……..I THINK !
I am his wife – NANCY ! Hi NANCY ! HEY YA'LL ! And we are trying to breathe !!!!!!! Scared…………but trying to TRUST GOD and not walk in FEAR !
I (Nancy) especially need to talk. I'm coming undone, because guess what, I've already been shut in and shut down sick with Fibro and you name it for the last 30 years, and how can we possibly go through this with no one well. We have a fantastic marriage……..the kind folks dream about. The NOTEBOOK Kind…….so close………too close and not much family. Only son is in Charlotte about 12 hours away struggling to live after losing his job in the recession.
I feel like I am drowning………………..he has taken care of me all these years. Sometimes I'm too weak to even carry my purse and he does that too. Have only gotten myself to Walmart one exit down about 5 times in the last year. Was off the operating table only 2 weeks when we learned this. Have liver disease (but not cancer) had a nasty gallbladder removed and all that on top of a dozen other things like the Fibro and CFS and several bad injuries from a wreck and 2 falls. HOW WILL WE DO THIS………….
WHAT WAS GOD THINKING………………….
I welcome any an all input and apologize for the long post right out of the shute !!!
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- April 17, 2012 at 5:37 pm
This is tough. But he is in good hands at M D Anderson. I had MM hit me in my bones and soft tissue in February of last year. I had been NED since 2000, so of course it was a great shock. I'm now finishing up a year on a braf/mek trial and doing well – all the mets are stable, smaller or gone. I'm praying for the same for your husband.
Hang in there,
Harry
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- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
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- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
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- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
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- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
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- April 17, 2012 at 6:04 pm
Ooops….sorry for the double post !!!
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- April 17, 2012 at 6:04 pm
Ooops….sorry for the double post !!!
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- April 17, 2012 at 6:04 pm
Ooops….sorry for the double post !!!
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- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
-
- April 17, 2012 at 6:00 pm
Thank you so much for writing, Harry ! You give me hope ! 🙂 And any measure of hope, I will take at this point. We do not have a copy of the PET SCAN yet to know how large they are, and Wayne was in such shock, I think he went out of body, and does not remember much after the first 2 or 3 she said over the phone. I know one of them in the left lung was 1.45. The first one found.
Here's praying none of them are larger than that. We feel very good at MDA. I forgot to say that Wayne had colon cancer at age 39 with an early spread in 1990, and did a year of chemo/max radiation, and then the melly in 1999. NOW THIS ! We have been going there for over 22 years.
I am so glad for you that you are doing well……I pray it will continue for many more years to come. SO NICE TO MEET YOU HARRY !
Caretaker Nancy (Wayne's devoted wife)
Any of you in a local support group ?
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- April 17, 2012 at 5:37 pm
This is tough. But he is in good hands at M D Anderson. I had MM hit me in my bones and soft tissue in February of last year. I had been NED since 2000, so of course it was a great shock. I'm now finishing up a year on a braf/mek trial and doing well – all the mets are stable, smaller or gone. I'm praying for the same for your husband.
Hang in there,
Harry
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- April 17, 2012 at 5:37 pm
This is tough. But he is in good hands at M D Anderson. I had MM hit me in my bones and soft tissue in February of last year. I had been NED since 2000, so of course it was a great shock. I'm now finishing up a year on a braf/mek trial and doing well – all the mets are stable, smaller or gone. I'm praying for the same for your husband.
Hang in there,
Harry
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- April 17, 2012 at 6:48 pm
Hi Nancy,
Sorry to hear that Wayne's melanoma resurfaced.
But — take a DEEP breath.
A lot has happened with regard to melanoma treatment since Wayne was diagnosed back in 1999. For one, two new drugs were approved last year. One of them is Zelboraf, which is what Wayne will be on. A lot of folks are doing well on it. It's not a cure, but appears to zap those nasty mets. Another drug is Yervoy and some folks do wll on that too. Yervoy can give you some nasty side effects, but not everyone gets them.
Then there are clinical trials, which your doctor can discuss with you. There's a BRAF/MEK trial and an anti PD-1 trial that are having some good results.
All these (and others I haven't mentioned) are options that did not exist when Wayne first was diagnosed. He's also being seen at one of the top melanoma centers in the country and is in good hands.
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- April 17, 2012 at 6:48 pm
Hi Nancy,
Sorry to hear that Wayne's melanoma resurfaced.
But — take a DEEP breath.
A lot has happened with regard to melanoma treatment since Wayne was diagnosed back in 1999. For one, two new drugs were approved last year. One of them is Zelboraf, which is what Wayne will be on. A lot of folks are doing well on it. It's not a cure, but appears to zap those nasty mets. Another drug is Yervoy and some folks do wll on that too. Yervoy can give you some nasty side effects, but not everyone gets them.
Then there are clinical trials, which your doctor can discuss with you. There's a BRAF/MEK trial and an anti PD-1 trial that are having some good results.
All these (and others I haven't mentioned) are options that did not exist when Wayne first was diagnosed. He's also being seen at one of the top melanoma centers in the country and is in good hands.
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- April 17, 2012 at 6:48 pm
Hi Nancy,
Sorry to hear that Wayne's melanoma resurfaced.
But — take a DEEP breath.
A lot has happened with regard to melanoma treatment since Wayne was diagnosed back in 1999. For one, two new drugs were approved last year. One of them is Zelboraf, which is what Wayne will be on. A lot of folks are doing well on it. It's not a cure, but appears to zap those nasty mets. Another drug is Yervoy and some folks do wll on that too. Yervoy can give you some nasty side effects, but not everyone gets them.
Then there are clinical trials, which your doctor can discuss with you. There's a BRAF/MEK trial and an anti PD-1 trial that are having some good results.
All these (and others I haven't mentioned) are options that did not exist when Wayne first was diagnosed. He's also being seen at one of the top melanoma centers in the country and is in good hands.
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