[tasjacques]

Dear Catherine,

Sorry for not to be precise. I’m on the higher dose every 2 weeks. After the first Ct Scan the result was incredible with over 70% reduction of mass. After my 2nd, 3rd, 4th Ct Scan the result continue to be incredible with over 50 % decreasing but the last one was a smaller result but still really good by standar. I’m faraway from NED ( still have some 4 or more over 3 cm) but still getting result from treatment. After checking with MERK they agree ( just yesterday news) to start me every 3 weeks but still don’t know the dose. That is great news for me because i’m not sure I can handle this side effects. I have right now one medecine call predizone ( 5Mg) per day to help. What hurts the most is short of breath and no one can understand why and don’t believe that has nothing to do with the other side effect. Well for that I use pain medecine but don’t work much.The last side effect I have is acid reflux after I eat, they gave me ondansentron but it stopped working this past few days.

I will have scans in 2 weeks and that will show the last 12 weeks without treatment due to hospitalization and stopage for side effects.

Im really worry about this next scan and feel really bad from this gastrittis still can not get over and I have only 2 more weeks prior to restart this trial. The problem is that if I stop I have nothing that will take care off the cancer and if I continue I will have again gastritis with colitis. I din’t mention the first time that I was hospitalize from those side effect I spend 25 days and lost 50 lbs. Follow a fews day later with 1 week in the hospital to deal with colitis. I was 180 lbs prior to this hospitalization and now I’m 115lbs and feel really weak and walking is hard, moving is hard all feels so difficult with no much solution and going nowhere and all I hear is just stop treatment because you can’t afford to lose anymore weight… and the other side they say don’t worry all will be ok it isn’t sure you will get this side effect again. I don’t see how I can afforded not to be in this trial that saves my life with out a doubt. They say i’m the only one that I have those kind of severe side effect but I can’t belive it or I don’t want to belive it is possible, that is why I reach all of you. Please contact me if you do have those side effect and how did you deal with it ?

Again thank you for all . Mahalo

[tasjacques]

Hi Kees,

That is so great that Mariette has been stable for one and a half year, gives tons of relieve to know that maybe Jacques will be also for a long time responding

As for a complete responder, I dunno yet, since we just started this past June, and we have had only one scans (well two a month apart), we do hope he continues to respond.

I wanted to ask you if Mariette has experienced loss of pigmentation or depigmentation (Vitiligo)?

Have a wonderful weekend!

Elenise

[tasjacques]

Thank you to both of you.

It is interesting how things can change so fast, this time for the good

Elenise

[tasjacques]

Hi Jonathan,

So sorry to hear about the brain mets, but your spirits are high and that sometimes is half the battle.

And it is an interesting debate the one of PD1 trial from Merck and BMS allowing or not to continue while having develop brain mets. Scary to think that you could be boot out of something that is helping you so much.

Wish you all the very best, and thank you for sharing so much information about this new treatment, it helps to know how the patients are doing.

I am happy that it is working for you.

Elenise

[tasjacques]

Erin so happy for you!!! It is really a good medication…my husband is also responding, we are so happy.

Enjoy your ‘boring’ days

Elenise

[tasjacques]

Thank you! I do wish soon this drug will be available for everyone.

We will continue enjoy a day at the time

Elenise

[tasjacques]

Wow talking about timing

What trial is she in? I am so happy she started treatment.

Jacques is doing great! First scans which were end of August showed about 70% reduction!!!!!! and UCLA did not believe it, so they redid the scans after 4 weeks and still shows reduction We are so happy. He is getting better and better each day. He does have joint pain here and there, which what bothers him the most but overall unbelievable results.

Hope for you and Mariette the times get better and she starts feeling the difference as well.

Keep us updated how she does.

Elenise

[tasjacques]

Hi Kees,

Just wondering how it went with Kaiser?

Elenise

[tasjacques]

Yeah definitely not a way to be a frequent flyer, 😯 but we are happy that the drug is working.

Good luck with Kaiser!

Elenise

[tasjacques]

Franny, I am so sorry to read this, and my heart goes to you. Jeff has wise words for you. I will keep you in my prayers for you to find peace in all this sorrow.

As Jeff said be kind to yourself, we care for you.

Elenise

[tasjacques]

Hi Kees,

We are Kaiser members and it has been working for us. We are located in Hawaii, and here they don’t care if we participate in anti PD 1 trial, which my husband is in UCLA.

We were with Kaiser since second recurrence (Dec 2012), we did Zel and then Ipi, both failed. We were able to enter a PD 1 trial in UCLA. Our biggest worries was for them to pay scans, blood work, or any other medical treatment we needed while on PD 1 trial. Kaiser Hawaii accepted to continue to cover with regular medical care which entail regular scans (my husband gets CT and MRI), medication (mostly pain medication), and any other appointments with the Kaiser oncologist.

So during this trial, he goes to UCLA get checked by docs, does blood work and gets the infusion all covered by MERCK, including biopsies. For us, he needs to do scans every 12 weeks and this Kaiser covers, we get a copy of the CT & MRI bring it to UCLA for them to read and records.

Our expenses as of right now are the air fairs, co-payments for office visits and meds.

Our UCLA coordinator and the doc were ok with this arrangement so I hope your trial allows that and also Kaiser at SF also allows it.

Let me know if you need more info, so happy your wife is doing PD 1!!! It is working amazingly with my husband

take care,

Elenise

[tasjacques]

Franny

How are you doing? You are in my prayers

Elenise

[tasjacques]

Hi Tamie and Cabronication,

My husband was in Zelboraf back in Jan-Feb 2013, his side effects were very mild at first, til he develop swelling of tong, face, lips, eyes etc. I don’t know if this applies to everyone since the reactions are always different from patient to patient. But wanted to share that my husband develop Steven’s Johnson disease which is a sever RARE allergic reaction to the medication. Just want to share this with both of you to be aware of the symptoms and do not take them slightly. It took me three visits to the ER for them to find out the severity of the situation. Just be aware, and if you don’t feel good ask for help from your doctors.

I wish you awesome responds as Dick’s but felt obligated to share since Cabronication mentioned tong swelling ….

Best wishes and keep us updated.

Elenise

[tasjacques]

My husband was with Z (had severe allergic reaction) then had Ipi, his taste changed dramatically while in Yervoy. Like you things would taste awful, even water will taste roten! My cooking changed by the day. It has been a great challenge to feed him. Vitamin water to replace plain water or water with flavor, soups were the best for him … All sorts of soups, I would just google and cook then it was he wanted spicy, then too spicy, … Also another thing he liked a LOT was curry dishes, and squash. Juice of all flavors. Acidic did not go to we’ll with him, out the lemonade, orange juice, etc.

I hope it helps the small tips to conquer the taste buds. Keep hydrated

Elenise

[tasjacques]

Hi Franny

So sorry to read what you are going thru. Catherine has a good suggestion, though its hard to leave his side it’s important you have some rest. I do hope you have someone to lean on and ask for help.

May God bring some peace to you and your husband. We have you in our prayers!

Elenise

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