› Forums › Cutaneous Melanoma Community › Results from my first scan for BRAF GSK113929 study
- This topic has 22 replies, 11 voices, and was last updated 12 years, 11 months ago by
mrsmarilyn.
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- May 19, 2011 at 6:07 am
This is going to be an essay, so apologies in advance…
At the start of March, I started feeling not so fantastic. Nauseous, abdo pain, and these little nodules started popping up at a rate of knots on my neck/clavicle and scalp- "Hold the phone! That can't be good!!" Off to see my GP, and in for a CT which discovered subq's in the abdo, one of which had completely blocked a ureter *rolls eyes* Drama, drama… off to have a stent inserted, then off to Sydney to aim for a brain met trial- 2 weeks later I was enrolled onto the GSK113929 study. Finally!!
This is going to be an essay, so apologies in advance…
At the start of March, I started feeling not so fantastic. Nauseous, abdo pain, and these little nodules started popping up at a rate of knots on my neck/clavicle and scalp- "Hold the phone! That can't be good!!" Off to see my GP, and in for a CT which discovered subq's in the abdo, one of which had completely blocked a ureter *rolls eyes* Drama, drama… off to have a stent inserted, then off to Sydney to aim for a brain met trial- 2 weeks later I was enrolled onto the GSK113929 study. Finally!!
(I didn't even ask what the scan results showed at the time. I made the executive decision that the study was either going to work, or it wasn't, and I could probably do without stressing the 'details' of what was going on in my body. It turned out to be the right choice for me on that occasion as my eyes nearly popped out of my head when I read the scan results from the study almost 4 weeks later.)
After a mere 3 days on the study, the nodules around my neck & clavicle had virtually disappeared and the ones on my scalp were reducing in size and pain (I thought my tumours must be making me hallucinate- how could it possibly act THIS quickly?!?). They had been hoping to be able to remove and biopsy several of the subq's and nodules to perform additional research on the effect of the drug, however within 2 weeks they no longer had any of the palpable or visible areas to choose from.
SCAN RESULTS (2 pages- impossible to condense)
MRI- Multiple underlying enhancing bilateral cerebral lesions however most have reduced in size. Left frontal from 14x12mm down to 5x5mm. Left parietal from 12x12mm down to 6x6mm. Right parietal from 11×9 down to 6x5mm. Some of the smaller lesions are no longer visible and this includes the previously demonstrated cerebellar lesions (of which I was blissfully ignorant! :D)
Dominant lesion in right basal ganglia may be slghtly larger at 23x21mm from 20×18 (note from me: THIS lesion had been previously zapped with SRS and I frequesntly seem to have some small growth following several months after SRS which often stabilises and then begins to reduce)
OVERALL: Reduction in size and in some cases resolution of many of the multiple cerebral and cerebellar metastases.
CT: Chest- reduction in size of right upper paratracheal nodule, down to 4mm from 11mm previously. No suspicious intrapulmonary mass.
Abdo & Pelvis: There remain 3 focal liver lesions (Really? I was blissfully ignorant of that, too! :D) One has reduced from 21x18mm down to 14x10mm. Another is persisting at 19x18mm, as does onea small lesion at 9x9mm. There has been a reduction in the right adrenal mass, and reduction in hydronephrosis.
OVERALL: there has been dramatic subtotal resolution of the previously demonstrated innumerabel subcutaneous nodules and significant reduction in size of the paratracheal and axillary lymph nodes, although only slight reduction in the size of the liver lesions.
And how could I forget the indignity of a "persisting nodule in the right flank, reduced from 19x11mm down to 11x7mm." One in my right butt cheek. Pffft! Perhaps I shouldn't have tempted melanoma by telling me consistently that it can kiss my butt cheek, eh? 😛
Back in another month for more scans and a chat with the docs.
SIDE EFFECTS: Sore/painful soles of the feet. Were it not for that I'd be tempted to be training for a half-marathon I feel so good otherwise. Am off pain meds completely (fentanyl) and currently weaning of the steroids dex/decadron. And stent should be out in a few weeks when I catch up with uroogist. Now, after a hectic 6 weeks away, I'm going to sit on MY lounge and catch up on some tele and veg out completely.
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- May 19, 2011 at 7:15 am
That's fantastic news! I hope the next set of scans shows even more "resolution."
I just started a BRAF/MEK combo trial last week, and your post is just the thing I wanted to hear. Thanks!
Best wishes,
Harry
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- May 19, 2011 at 7:15 am
That's fantastic news! I hope the next set of scans shows even more "resolution."
I just started a BRAF/MEK combo trial last week, and your post is just the thing I wanted to hear. Thanks!
Best wishes,
Harry
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- May 19, 2011 at 8:17 am
That's fantastic news! I am so happy for you! Here's hoping that continued time shrinks them even more! My husband is waiting with baited breath for his BRAF results so that he might qualify for a trial available in our area.
It's always encouraging to hear of people responding to treatments. : )
Michelle, wife of Don, Stage IV
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- May 19, 2011 at 8:17 am
That's fantastic news! I am so happy for you! Here's hoping that continued time shrinks them even more! My husband is waiting with baited breath for his BRAF results so that he might qualify for a trial available in our area.
It's always encouraging to hear of people responding to treatments. : )
Michelle, wife of Don, Stage IV
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- May 19, 2011 at 9:49 am
That's really wonderful!! Thanks for sharing your remarkable results!
Best wishes
Frank from Australia
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- May 19, 2011 at 9:49 am
That's really wonderful!! Thanks for sharing your remarkable results!
Best wishes
Frank from Australia
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- May 19, 2011 at 1:01 pm
Dear Dear Nic
Not totally understanding this, but I am sooooo happy that all the disappearing and shrinking and no pain meds, and weaning off steroids is happening to you.
No marathoning just yet, but I love the idea of your lounge and just relaxing and know that things are so much better-er-er than before. Like it or not, to me you are an inspiration!
Bonnie Lea
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- May 19, 2011 at 1:01 pm
Dear Dear Nic
Not totally understanding this, but I am sooooo happy that all the disappearing and shrinking and no pain meds, and weaning off steroids is happening to you.
No marathoning just yet, but I love the idea of your lounge and just relaxing and know that things are so much better-er-er than before. Like it or not, to me you are an inspiration!
Bonnie Lea
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- May 19, 2011 at 1:18 pm
Nic,
What totally fantastic news! A toast to you that mel will continue to disappear from your body and let you go on enjoying your little girl.
I will learn from you and never tell mel to kiss my @%%!
Thanks for sharing with everyone and spreading hope and happiness.
Linda
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- May 19, 2011 at 1:18 pm
Nic,
What totally fantastic news! A toast to you that mel will continue to disappear from your body and let you go on enjoying your little girl.
I will learn from you and never tell mel to kiss my @%%!
Thanks for sharing with everyone and spreading hope and happiness.
Linda
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- May 19, 2011 at 3:55 pm
Nic! this sounds like pretty good news overall.
are you exhausted???
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- May 19, 2011 at 3:55 pm
Nic! this sounds like pretty good news overall.
are you exhausted???
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- May 19, 2011 at 5:58 pm
Nic, I think you are a honeybadger-rubber ball mix, to be honest. You fight through anything, you never get down, and you spring back so fast, that I have come to expect you to recover from virtually everything.
God Bless
John
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- May 20, 2011 at 6:02 pm
Wow, I have been wondering how you have been doing and you have quite a journey as always!!! but you keep on keeping on, and getting right on top of symptoms and tests and treatments and have such fantastic results like this….keep it up!
Vermont_Donna, stage 3a
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- May 20, 2011 at 6:02 pm
Wow, I have been wondering how you have been doing and you have quite a journey as always!!! but you keep on keeping on, and getting right on top of symptoms and tests and treatments and have such fantastic results like this….keep it up!
Vermont_Donna, stage 3a
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- May 21, 2011 at 2:52 pm
That is Awesome! WOW! My brother on GSK/MEK – just went through a very painful first two months. He had to take pain relieft -I am not sure what he took-but his whole body was in pain. BUT-he golfed all day yesterday!!! Yippeee! The pain went away. He is back in action -and feeling great. He goes to Nashville for scan on Wednesday-And we are looking for a NED real soon!
Glad you decided to veg out — you deserve it and keep me posted on your excellent results!
enjoy the summer!
Mrs Marilyn
Sister of Gary Stage IV
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- May 21, 2011 at 2:52 pm
That is Awesome! WOW! My brother on GSK/MEK – just went through a very painful first two months. He had to take pain relieft -I am not sure what he took-but his whole body was in pain. BUT-he golfed all day yesterday!!! Yippeee! The pain went away. He is back in action -and feeling great. He goes to Nashville for scan on Wednesday-And we are looking for a NED real soon!
Glad you decided to veg out — you deserve it and keep me posted on your excellent results!
enjoy the summer!
Mrs Marilyn
Sister of Gary Stage IV
Tagged: cutaneous melanoma
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