Newly diagnosed, any massachusetts folks?

Hi

So sorry to have to meet new people here.

While I'm not from Massachusetts I am from Connecticut, so we are almost neighbors.  I am also going into my 19th month on Zelboraf and can give you some of my side effect experience.  The only side effect you are experiencing that I had was hair loss although it was from my body and not my head.

The other side effects I have had were body rash (none on face), very sensitive to sun (tough for someone who likes gardening), mild neuropathy in both feet, mild swelling in left foot, warts on various parts of body with some taken off.  All except one wart that was taken off was benign, one was a squamous-cell carcinoma.

I hope your GI effects diminish quickly and that you continue to feel benefits from Zelboraf.

Best of luck

Dick

Hi

So sorry to have to meet new people here.

While I'm not from Massachusetts I am from Connecticut, so we are almost neighbors.  I am also going into my 19th month on Zelboraf and can give you some of my side effect experience.  The only side effect you are experiencing that I had was hair loss although it was from my body and not my head.

The other side effects I have had were body rash (none on face), very sensitive to sun (tough for someone who likes gardening), mild neuropathy in both feet, mild swelling in left foot, warts on various parts of body with some taken off.  All except one wart that was taken off was benign, one was a squamous-cell carcinoma.

I hope your GI effects diminish quickly and that you continue to feel benefits from Zelboraf.

Best of luck

Dick

I am not on zelboraf, but I just wanted to say Hi.  I too, am 31 years old, and just shocked this happened so early in life, so I can completely understand where you are and how you are feeling.  We've barely started to live our adult lives, 10 years out of college, if that, and we stuck with this stupid cancer.

I don't know about those side effects as I'm not on those drugs/treatments there (I'm on Yervoy/IPI), but I think any diarrhea/gas is like a #1 side effect of any drug/treatment, so I'd guess those are normal.

Hair loss too, is probably a side effect. I lost my hair where I had Gamma Knife, and even the Brain doctor who did it, said he's rarely seen anyone lose their hair from it, but of course I did!  Finally 2 months later, it just started to re-grow this week! I already regrew it once after my original brain surgery back in June 2011.

I am not on zelboraf, but I just wanted to say Hi.  I too, am 31 years old, and just shocked this happened so early in life, so I can completely understand where you are and how you are feeling.  We've barely started to live our adult lives, 10 years out of college, if that, and we stuck with this stupid cancer.

I don't know about those side effects as I'm not on those drugs/treatments there (I'm on Yervoy/IPI), but I think any diarrhea/gas is like a #1 side effect of any drug/treatment, so I'd guess those are normal.

Hair loss too, is probably a side effect. I lost my hair where I had Gamma Knife, and even the Brain doctor who did it, said he's rarely seen anyone lose their hair from it, but of course I did!  Finally 2 months later, it just started to re-grow this week! I already regrew it once after my original brain surgery back in June 2011.

Hi,

I use to live in MA but am now up in ME.  My oncologist is Dr Lawrence from Mass General in Boston so I come down for all my appointments and tests to MA.

I am sorry you have jumped right into stage 4 melanoma without any warning, that must have been really hard and shocking for you and your family. 

I am on zelboraf for 2 months now..  Had great scans last week 50% reduction.  My side effects are sun sensitivity, warts and squamous cell cancers popping up now and then(which dermatologist removes squamous).  I also have had some hair loss but on my body eyebrows etc not as much from my head.  I have def dealt with the nauseau, gas and dairrhea now and then.  It does seem to come and go, I am not sure if I make it worse when I eat dairy? or other foods trigger it? 

  I am soo relieved to have pain gone, I was having bad pain in shoulder and left side and that disappeared quickly once I started.    Similar plan for me, shrink tumors or have them disappear then switch to another drug like ippi. 

keep us posted

laurie from maine

Hi,

I use to live in MA but am now up in ME.  My oncologist is Dr Lawrence from Mass General in Boston so I come down for all my appointments and tests to MA.

I am sorry you have jumped right into stage 4 melanoma without any warning, that must have been really hard and shocking for you and your family. 

I am on zelboraf for 2 months now..  Had great scans last week 50% reduction.  My side effects are sun sensitivity, warts and squamous cell cancers popping up now and then(which dermatologist removes squamous).  I also have had some hair loss but on my body eyebrows etc not as much from my head.  I have def dealt with the nauseau, gas and dairrhea now and then.  It does seem to come and go, I am not sure if I make it worse when I eat dairy? or other foods trigger it? 

  I am soo relieved to have pain gone, I was having bad pain in shoulder and left side and that disappeared quickly once I started.    Similar plan for me, shrink tumors or have them disappear then switch to another drug like ippi. 

keep us posted

laurie from maine

Hi there!

Not from MA, but live just over the boarder in NH.  Receive all my care out of Dana Farber.  I too was diagnosed right off (Aug 2005) at Stage IV with unknown primary.  Been through quite a bit for the first several years  (surgeries, rad., IL-2, trials), but have been NED for some time thanks largely to Ipi trial (now Yervoy).  MPIP is a great place to ask questions – it's been a life saver for me over the years – so ask away.

Just FYI if you're interested/able –  the Melanoma Foundation of New England is hosting a Fall Melanoma Symposium on Wed, November 9, from 6:30 – 9pm at Dana Farber Cancer Center in Boston.  I believe that Dr. Atkins from BIDMC and Dr. Hodi from DF will be discussing lastest treatment options.  Typically good opportunity to ask questions of docs and meet other Mel patients/survivors.

Hang in there!

Rocco, Stage IV (since Aug 2005), Ipi responder.

  http://www.mfne.org/?page=home  TyipTy

Hi there!

Not from MA, but live just over the boarder in NH.  Receive all my care out of Dana Farber.  I too was diagnosed right off (Aug 2005) at Stage IV with unknown primary.  Been through quite a bit for the first several years  (surgeries, rad., IL-2, trials), but have been NED for some time thanks largely to Ipi trial (now Yervoy).  MPIP is a great place to ask questions – it's been a life saver for me over the years – so ask away.

Just FYI if you're interested/able –  the Melanoma Foundation of New England is hosting a Fall Melanoma Symposium on Wed, November 9, from 6:30 – 9pm at Dana Farber Cancer Center in Boston.  I believe that Dr. Atkins from BIDMC and Dr. Hodi from DF will be discussing lastest treatment options.  Typically good opportunity to ask questions of docs and meet other Mel patients/survivors.

Hang in there!

Rocco, Stage IV (since Aug 2005), Ipi responder.

  http://www.mfne.org/?page=home  TyipTy

Hi there!

Not from MA, but live just over the boarder in NH.  Receive all my care out of Dana Farber.  I too was diagnosed right off (Aug 2005) at Stage IV with unknown primary.  Been through quite a bit for the first several years  (surgeries, rad., IL-2, trials), but have been NED for some time thanks largely to Ipi trial (now Yervoy).  MPIP is a great place to ask questions – it's been a life saver for me over the years – so ask away.

Just FYI if you're interested/able –  the Melanoma Foundation of New England is hosting a Fall Melanoma Symposium on Wed, November 9, from 6:30 – 9pm at Dana Farber Cancer Center in Boston.  I believe that Dr. Atkins from BIDMC and Dr. Hodi from DF will be discussing lastest treatment options.  Typically good opportunity to ask questions of docs and meet other Mel patients/survivors.

Hang in there!

Rocco, Stage IV (since Aug 2005), Ipi responder.

  http://www.mfne.org/?page=home  TyipTy

Phoenix,

We are from Massachusetts. My husband is 46; his diagnosis came out of nowhere back in March. He had a Stage 1A spot removed from his right shoulder two years ago…and we were told he would be fine. He went to his derm every 6 months like clockwork; nothing was ever found until his lymph node under his arm swelled up like a lemon. Boom, just like that, he was Stage 4. 

Don's spread has been to more lymph nodes in his right shoulder (beyond what was removed), lungs, liver, and bone (bone spread is the worst, with it half way up his spine, his hips, sternum, ribs, etc).

He is also a patient of Dr. Lawrence. I can tell you that our experience with Dr. Lawrence and his team has been phenomenal. If you read our profile, you'll see that we started out at Dana Farber and didn't have a good experience there. It was night and day.

So far, my husband has had chemo (carboplatin/taxol) and started vemurafenib the same week it was FDA approved. He was transitioned to the RX Zelboraf a couple weeks ago.

So far, he has had some small vomiting issues (just a couple times), a pretty good rash (although not too itchy), small warts (none that have been squamous cell yet), some fatigue that comes and goes. He had lost ALL his hair when he had the chemo, so most of it is actually growing back. However, I don't notice nearly as much of the body hair growing back (as opposed to his eyelashes, eyebrows and head hair), and have heard that body hair loss is more common than head hair, although I have heard of some head hair thinning from Zelboraf. 

Zelboraf can have some startling results (in a good way) and I hope you will have that kind of response. Also wishing your radio surgery goes well!

Well met, fellow Bay Stater!

Michelle, wife of Don

Phoenix,

We are from Massachusetts. My husband is 46; his diagnosis came out of nowhere back in March. He had a Stage 1A spot removed from his right shoulder two years ago…and we were told he would be fine. He went to his derm every 6 months like clockwork; nothing was ever found until his lymph node under his arm swelled up like a lemon. Boom, just like that, he was Stage 4. 

Don's spread has been to more lymph nodes in his right shoulder (beyond what was removed), lungs, liver, and bone (bone spread is the worst, with it half way up his spine, his hips, sternum, ribs, etc).

He is also a patient of Dr. Lawrence. I can tell you that our experience with Dr. Lawrence and his team has been phenomenal. If you read our profile, you'll see that we started out at Dana Farber and didn't have a good experience there. It was night and day.

So far, my husband has had chemo (carboplatin/taxol) and started vemurafenib the same week it was FDA approved. He was transitioned to the RX Zelboraf a couple weeks ago.

So far, he has had some small vomiting issues (just a couple times), a pretty good rash (although not too itchy), small warts (none that have been squamous cell yet), some fatigue that comes and goes. He had lost ALL his hair when he had the chemo, so most of it is actually growing back. However, I don't notice nearly as much of the body hair growing back (as opposed to his eyelashes, eyebrows and head hair), and have heard that body hair loss is more common than head hair, although I have heard of some head hair thinning from Zelboraf. 

Zelboraf can have some startling results (in a good way) and I hope you will have that kind of response. Also wishing your radio surgery goes well!

Well met, fellow Bay Stater!

Michelle, wife of Don

Phoenix,

We are from Massachusetts. My husband is 46; his diagnosis came out of nowhere back in March. He had a Stage 1A spot removed from his right shoulder two years ago…and we were told he would be fine. He went to his derm every 6 months like clockwork; nothing was ever found until his lymph node under his arm swelled up like a lemon. Boom, just like that, he was Stage 4. 

Don's spread has been to more lymph nodes in his right shoulder (beyond what was removed), lungs, liver, and bone (bone spread is the worst, with it half way up his spine, his hips, sternum, ribs, etc).

He is also a patient of Dr. Lawrence. I can tell you that our experience with Dr. Lawrence and his team has been phenomenal. If you read our profile, you'll see that we started out at Dana Farber and didn't have a good experience there. It was night and day.

So far, my husband has had chemo (carboplatin/taxol) and started vemurafenib the same week it was FDA approved. He was transitioned to the RX Zelboraf a couple weeks ago.

So far, he has had some small vomiting issues (just a couple times), a pretty good rash (although not too itchy), small warts (none that have been squamous cell yet), some fatigue that comes and goes. He had lost ALL his hair when he had the chemo, so most of it is actually growing back. However, I don't notice nearly as much of the body hair growing back (as opposed to his eyelashes, eyebrows and head hair), and have heard that body hair loss is more common than head hair, although I have heard of some head hair thinning from Zelboraf. 

Zelboraf can have some startling results (in a good way) and I hope you will have that kind of response. Also wishing your radio surgery goes well!

Well met, fellow Bay Stater!

Michelle, wife of Don

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing. 

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing. 

Hey!

I am also 31, living in MA, in the healthcare field and have Dr Lawrence as my oncologist! I also don't know any other melanoma patients. I'm stage 3a and just reached 1 yr NED this August. 

I wish you the best. It's an awful disease and an awful thing to happen when you're so young. Continue to fight and stay positive. You can do this.

BTW – I love all the Dr Lawrence & team love right now – he & Krista and that entire team are amazing.