› Forums › General Melanoma Community › stage 4 now :(
- This topic has 14 replies, 7 voices, and was last updated 13 years, 5 months ago by
Vermont_Donna.
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- July 20, 2011 at 7:11 pm
hi,
hi,
I just came back from hospital where I had a tumor removed from intestines which was causing a blockage. The tumor removed from intestine was melanoma and scans found tumor in my liver and left lung Brain mri showed all clear there.. I also am having strong pain in my left shoulder pretty constant so they re thinking it is in my bones there. Met with Dr Lawrence mass general yesterday. My tumor is being tested for Braf and that is the option he suggests we go if I test positive. We will discuss what we do if I am not Braf positive, I believe they were leaning to ippilumb(sp?). My husband and I are trying to absorb all of this.
I believe Dr Lawrence is one of the best as far as being up on reseach and trials and am feeling that he can help guide us thru this.
any thoughts? I know it is real basic info, my family is currently overwhelmed as my baby sister is in hospital today having double masectomy and we are all trying to surround her and help her thru this, so timing for my melanoma to resurface stinks.
laurie from maine
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- July 20, 2011 at 7:36 pm
Laurie, I am thinking of you and your family at this time – surrounding you and your sister with prayer. I was recently diagnosed with Stage IV early June. I have had surgery to remove area of disease and I am currently viewing options for treatment. I am positive for BRAF and have appointmens set with Johns Hopkins and Sloan Kettering. I also found researching this site for Trials is a good tool. I found one that I might be a candidate for and had immediate response within 24hrs of additional information I was requesting. Perhaps you may wish to view the Trials on this site and discuss with Dr. Lawrence during your next visit. Thinking of you –
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- July 20, 2011 at 7:36 pm
Laurie, I am thinking of you and your family at this time – surrounding you and your sister with prayer. I was recently diagnosed with Stage IV early June. I have had surgery to remove area of disease and I am currently viewing options for treatment. I am positive for BRAF and have appointmens set with Johns Hopkins and Sloan Kettering. I also found researching this site for Trials is a good tool. I found one that I might be a candidate for and had immediate response within 24hrs of additional information I was requesting. Perhaps you may wish to view the Trials on this site and discuss with Dr. Lawrence during your next visit. Thinking of you –
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- July 20, 2011 at 7:51 pm
So sorry to hear this news Laurie. We can relate to the "bad timing". My 30 year old brother was diagnosed with terminal stage IV stomach cancer in May, and Dave's scans in June showed his mel has progressed to stage IV. Then again, I can't think of a good time for cancer!?
It sounds to me as if your doctor is on the right track. A friend of ours has been on the B-RAF drug since early spring and he had similar mets as yours, including one on his spine. He felt better after a week and is now back to work. He is hoping to be well enough (he's already gained back some weight) to do IL-2 at the end of summer. IPI does take some time to work, and there are always chemo options in addition to trials at NIH which are successful for some people as well.
Please keep us posted on your treatment options. Wishing you all the best that you find the treatment that works for you.
Maria & Dave
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- July 20, 2011 at 7:51 pm
So sorry to hear this news Laurie. We can relate to the "bad timing". My 30 year old brother was diagnosed with terminal stage IV stomach cancer in May, and Dave's scans in June showed his mel has progressed to stage IV. Then again, I can't think of a good time for cancer!?
It sounds to me as if your doctor is on the right track. A friend of ours has been on the B-RAF drug since early spring and he had similar mets as yours, including one on his spine. He felt better after a week and is now back to work. He is hoping to be well enough (he's already gained back some weight) to do IL-2 at the end of summer. IPI does take some time to work, and there are always chemo options in addition to trials at NIH which are successful for some people as well.
Please keep us posted on your treatment options. Wishing you all the best that you find the treatment that works for you.
Maria & Dave
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- July 20, 2011 at 8:32 pm
I'm sorry, Laurie, for all this you're having to deal with and your sister's cancer also. "Overwhelmed" is putting it mildly! But remember, you need support too.
Thankfully, you're in good hands and you've also got a lot of prayers going up for you and positive thoughts going your way.
Hang tight, stay tough & fight.
Lord, in Your mercy, make a way for Laurie and for her sister. Hold them both and open the doors they each need opened. Thank You. Amen.
Grace and peace,
Carol
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- July 20, 2011 at 8:32 pm
I'm sorry, Laurie, for all this you're having to deal with and your sister's cancer also. "Overwhelmed" is putting it mildly! But remember, you need support too.
Thankfully, you're in good hands and you've also got a lot of prayers going up for you and positive thoughts going your way.
Hang tight, stay tough & fight.
Lord, in Your mercy, make a way for Laurie and for her sister. Hold them both and open the doors they each need opened. Thank You. Amen.
Grace and peace,
Carol
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- July 21, 2011 at 4:21 am
Awww, Laurie, I'm sorry to hear that. We certainly know how much this news royally bites. Is Dr. Lawrence talking to you about the Compassionate use PLX4032 trial (or have you not gotten that far yet?)? That is the one Don is signed up for when his chemo treatments are no longer effective.
I am going to pray really hard that you are BRAF positive. I agree that Dr. Lawrence has a really good handle on what's out there right now for treatments.
Sending positive thoughts your way and hoping that you will find a great durable treatment!
Michelle, wife of Don
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- July 21, 2011 at 11:04 am
Dear Laurie,
I am so sorry that you are now stage 4, and so sorry for your sister with breast cancer. From all I have read over the years here at MPIP Dr Lawrence and Mass General have excellent reputations. I had my ILP at Mass General (different doctor tho). I was impressed with overall patient care and didnt feel like a number.
I will be thinking of you as you sort out treatments with your team and get started and also of your sister too.
Hugs,
Vermont_Donna, stage 3a, NED
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- July 21, 2011 at 11:04 am
Dear Laurie,
I am so sorry that you are now stage 4, and so sorry for your sister with breast cancer. From all I have read over the years here at MPIP Dr Lawrence and Mass General have excellent reputations. I had my ILP at Mass General (different doctor tho). I was impressed with overall patient care and didnt feel like a number.
I will be thinking of you as you sort out treatments with your team and get started and also of your sister too.
Hugs,
Vermont_Donna, stage 3a, NED
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- July 21, 2011 at 4:21 am
Awww, Laurie, I'm sorry to hear that. We certainly know how much this news royally bites. Is Dr. Lawrence talking to you about the Compassionate use PLX4032 trial (or have you not gotten that far yet?)? That is the one Don is signed up for when his chemo treatments are no longer effective.
I am going to pray really hard that you are BRAF positive. I agree that Dr. Lawrence has a really good handle on what's out there right now for treatments.
Sending positive thoughts your way and hoping that you will find a great durable treatment!
Michelle, wife of Don
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