My sister's journey

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My sister's journey

Post by Thomvdv » Sun Feb 22, 2015 8:48 am

maybe it can be helpful for others?

Sister - Ann (15/03/1985)

Stage 1 - 2004
Stage 2 - december 2010
Stage 2 - may 2011
Stage 4 - July 2013

Leuven, Belgium

Doctor - Dr. Wolter

(to be reworked)
2004 First melanoma right leg. Big exercision.
2010 (december) Lump found on the same place; removed.
2011 (may) Again she found a lump on the same place; they removed it. But did a bigger excersion to have a bigger margin.
2013 In January she had an infected pancreas. We ended up the emerency, they did a CT-scan but there was nothing to see. In April she went for her 3 month echo's and they were all clear. With her echo's in June she was diagnosed with metastatic melanoma: 3 big tumors in the liver, a big one in the pancreas, stomach, several glands and vessels and the biggest on her ovaries.


2004, 2010, 2011: surgery to remove melanomas, tumors in the right leg and bigger excersicion.
August 2013: unexpected 2 spots came available in the combination dabrafenib/trametinib. She has been on it ever since.
total of 150mg drabrafenib and 2mg tametinib (2 times a day).

pills MUST be conserved in the fridge.

8am: no eating or drinking - soberness till 11 am
10am: 75mg drabrafenib and 2 mg trametinib
11 am: can eat and drink again

8pm: stop eating and drinking
10pm: 75mg drabrafenib
11pm: can eat/drink again

Side-effects: (only in the beginning, nowadays little to none)
- tiredness
- infections of the fattissue in the legs (lumps, feels warm and like a bruise)
- heavy legs and joints (rare) -- CRAMPS now
- high bloodpressure (region 15/10), gets medication for it if her kidneys can hold it) -- FINE now

scan - 11/20/2013
Everything but the liver and ovaries disappeared. But they had shrunk 40%. Liver now only has 1 tumor.

scan - 17/01/2014
All tumors are stable, reduced 2mm.

scan - 14/03/2014

All tumors are stable, reduced again 2mm. (The onc said "stable" but 2 + 2 = 4 mm so it's still going down!)
Plus since 2 weeks energy level back to normal again since august 2013, side-effects have been reduced to nothing, except high blood pressure.

scan - 9/05/2014
All tumors are stable, reduced some mm.
There was a panic because the radiologist reported a "grey zone" on the liver next to the small tumor. So extra echo's and extra CT-scan but all came negative!

scan - 4/07/2014
All tumors are stable, liver reduced 4 mm. So that leaves with one small measurable tumor on the liver and a small one on the ovaries.
LDH were a surprisingly 98.
Blood pressure is back to normal level, tiredness is back though but not too severe. New sideeffect: legcramps

scan - 29/08/2014
All tumors are stable. Onc talked about cyste but i'm thinking he means cyste-like characteristics for the tumor on the liver. Tumor on the ovaries changed shape but was a bit smaller. He talked about she still being in remission.
Blood pressure was a bit up (but guessing it was scanxiety), tiredness, legcramps and inflammation of the fattissue.
We are 56 weeks into treatment.

UPDATE: we got a message scan are now moved up to every 3 months instead of 2 because we have hit one year

scan - 21/11/2014
all stable!

UPDATE: because she had minor headaches for 4 weeks they had a scan of the brain: all clear!

scan - 13/02/2015
all stable!

NEXT SCAN: 8/5/2015

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Re: My sister's journey

Post by Thomvdv » Sun Feb 22, 2015 8:52 am

People question why we don't switch to an immunotherapy. So I talked to the oncologist regarding transition to immunotherapy last scan.

He recommends - in the case of my sister - not to do so.
Why not?
- But he can, for now, only offer IPI in second line
- He has patients who are already more than 3 years on the combo, in Europe there are many more
Vemu is known for so long and one can almost clock it that it’s done after +/- 6 months (of course we know exceptions!). Dabrafinib and certainly the combos are not that old to know the long-term results. Who knows, in some people the cancer chronic with this combination. It is still too early to say but there is % chance for % of people. There are 20 people with him started about 3 years ago, a number 7 'only' had to stop (He named a few doctors who have the same opinion)
- My sister had an immense remission (he said that's a good sign to stay long on the combo) plus ab-sol-utely no side effects. She has a normal life.
- Immunotherapy (especially IPI) does not guarantee that it responds
- We can not be simply assumed that we 'just' go back into the combo; the cancer may have since found other paths
- Immunotherapy, in patients with grade 3 or 4 toxicity cause of that rule out other therapies
- It is not that at EVERY patient cell division is faster, he has more patients with slow than rapid cell division after resistance.

==> Why stop a therapy that is succesfull without any side effects for another road that brings many uncertainties?
==> Why change security of the NOW in uncertainties with all their consequences?

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Re: My sister's journey

Post by Mikers » Sun Feb 22, 2015 11:57 am

Thank you very much, Thomvdv!
Very encouraging story since braf combo often seems to be able to become dangerous at some point.
Have you been thinking of surgical removal of the last tumor (or there can be other options like electrocoagulation)? Just to be sure there is nothing visible left.
BTW I wonder what happens if all tumors are totally shrunk with combo? Should patient stop braf therapy or should switch to immuno or anything else...

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Re: My sister's journey

Post by MathewR » Sun Feb 22, 2015 11:21 pm

Thomvdv, I was on the combo for 18 months (I also tried ipi within this time period). I concur with what you've said, except that I might push for more frequent scans (8-10 weeks). In December I had stable disease (stable for 14 months). In February (10 weeks later), I had a new brain met and 3 new lung nodules. Since immunotherapy needs time to work, it is important to catch the progression as early as possible.

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Re: My sister's journey

Post by Lesli » Mon Feb 23, 2015 1:38 am

Dear Thomvdv,
How generous of you to recount your sister's experience for those to come who have so many questions about what is possible.
I also received the same advice from melanoma specialists here in remain on the combo for as long as it works, catch any sign of progression as early as possible and switch to immunotherapy immediately.
Additionally, I was told that the response and success numbers for Ipi are on the rise since so many more patients are requesting access to Ipi who with a history of the combo drugs having reduced their cancer burden. A "restaging" happens after treatment with the Combo and the better the results on the combo, the better Ipi has a chance to kick in and work, thanks to the bonus time offered by a good regression.
Best wishes to your sister. Her time on the combo drugs are inspiring.

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Re: My sister's journey

Post by Thomvdv » Mon Feb 23, 2015 7:22 am

Mikers: onco has ruled out any surgery. her mets were everywhere in the bowel to begin with so he reckons that is too late because it so far in her body and blood (if i remember correctly his opinion on this)

MathewR: you had the combo together with IPI? Or did you have the combo and afterwards IPI in a period of 18 months? Indeed, what you say is also a concern of mine. Because first we had a scan every 8 weeks. After 12 months it changes into 12 weeks according to protocol (this is still a trail). We got nervous with that news but the onc says he doesn't think we are "gonna miss the boat". And he says 8 to 12 weeks is the standard of a new evaluation of the body. He also said that scans aren't without risk as well with all the stuff you drink. He did ask her to be extra carefull with symptoms. But i totally get what ur saying. (Some weeks ago she had headaches so we had an extra mri: all clear, aches were probably from the bloodpressurepills) and i'm having an extra eye on her and some symptoms... totally get what ur saying.

Lesli: not sure i totally understand you. Changes of ipi working after failing inhibitors are bigger? Or do people get the combo + ipi? Are you still on the combo? When do you have scans? every 8 to 12 weeks?

What is for sure is that i don't want her to waste time on the ipi. hoping for a trail or a way to access immuno as second line...

is there any word on the EA ipi/nivo in Europe?

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Re: My sister's journey

Post by Lesli » Mon Feb 23, 2015 10:32 am

Hi Thomvdv,

A Melanoma specialists at the Melanoma Clinic at Seattle Cancer Care Alliance told me during a second opinion meeting that the response rate for Ipi is rising beyond original numbers (roughly 15%) because more patients were starting Ipi in a healthier condition than in the past. While in the past, patients (regardless of tumor burden) were placed on Ipi because it was all that was availabe, today, more and more patients are beginning Ipi after having been on the combo for an average of 9-10 months.
One of the biggest challenges with Ipi is that it can take 3-6 months to really kick in to work. Many Melanoma patients with a heavy tumor burden can't survive that waiting period (hence, lower response rates to Ipi). The combo drugs decrease tumor burden and offer more patients increased months of life. With that healthier condition, Ipi has a greater chance of doing its job.
Does that make more sense?
I believe that standard protocol now for patients who are Braf positive is to offer the combo first, Ipi second and PD-1 (for those in the US currently) third. In the near future, PD-1 should be available in Europe and elsewhere. In the near future, we hope PD-1 will become the first line of treatment.
All of this information is so recent. When I was diagnosed in September 2013, order of treatment was being debated. PD-1 was not available in the US. My oncologist's words ring in my ears still "We didn't deal this hand. Our job is to try to figure out how to play it nonetheless."
Regards, Leslie

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Re: My sister's journey

Post by Thomvdv » Mon Feb 23, 2015 11:02 am

Thank you for your clarification Lesli! Very clear now :)

Our trail nurse said ipi was in the hospital around 21 - 25 response rate. But i still prefer anti-pd1 as second line or ipi/nivo.

And we obviously hope we never need to!

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Re: My sister's journey

Post by Thomvdv » Sun Mar 15, 2015 3:11 pm

Yesterday we had a surpriseparty for her 30th birthday (who thought THAT would happen???!) ... nref=story

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Re: My sister's journey

Post by Thomvdv » Sat Mar 28, 2015 8:59 am

few days after her birthday she got angina tonsillaris. her son had it the week previous and also got it again.
because the onc doesn't like her taking antibiotics she stopped taking them the moment she started to feel better. so now she has it again. onc said it's ok to take antibiotics again but find its strange she has it again.
hope it's just the same thing like her son and it's because she didn't take her antibiotics entirely

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