CSN Login
Members Online: 23

The new miracle drug for cancer (no sarcasm!)

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I know you've all heard of Crizotinib by now - also known as PF1066, and now known as Xalkori as it is released by Pfizer for use in the general population, yayy! I'll be reminding my doc that he said I could do well on this drug despite not having the ALK mutation, since Tarceva worked so well for me (even though I didn't have the EGFR mutation, either.). Let's see if he can get my insurance to cover it, while I still HAVE insurance :) We should all be asking our docs about this drug, make them aware of it!

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

My wife tested positive for the mutation last week after testing negative 5 months ago..... and yes.... this is a "miracle drug" that should not be withheld.

lekkerone
Posts: 199
Joined: Jan 2011

I am very pleased for everyone who needs it and hope you all can get it.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

My wife started xalkori/crizotinib today. She was enrolled in the study last Thursday and pfizer closed it to new entrants after the fda approval. Her health has declined rapidly the last 6 weeks, new scans indicated growth and new growths in many places.... enough that there is no way she can walk her marathon.... but she is looking at another marathon in november assuming crizotinib works. I never doubt my wifes dedication.

lekkerone
Posts: 199
Joined: Jan 2011

My very best to your wife as she starts on this new drug. I don't doubt you two for a minute as you are an amazing pair. Diane

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Wishing your wife the best of luck with the new drug and I'll be praying that she can walk the marathon in November. She is such an incredible woman!!!

grannylove
Posts: 183
Joined: Apr 2011

NayPaul,
Lifting you both up in thought and prayers! Looking for positive outcomes with crizotinib so that you and your wife will have a lifetime marathon. Stay strong and know we are here. God bless.
Cheryl

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

It's been an up and down week. She was pretty much out of commission the first few days of the drug. Then Monday, she did very well. We went to the zoo, she was up all day etc. But starting yesterday afternoon she has faultered. She is having trouble keeping things down, so I have to plan the meds at the right time. I'm going to try and take her in tommorrow to get some fluids. She is losing a lot of weight and seems dehydrated. I do believe Crizotinib is her best chance so I want to keep getting this into her.

Thanks again.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Over the last week, my wife as made slow but steady progress. We cut back on her morphine patch last Saturday, and will likely end its uuse altogother tomorrow. She is now taking no other pain meds. She as also cut back on her nausea meds. She still has trouble eating, bt is drinking ensure and water. She is also awake about half the day. She wants to try walking again by the end of the week. I think ending the morphine will give her much more energy.

;)

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

That sounds so great! I am sure she can't wait to start walking again! PRAYERS flying your way.

lekkerone
Posts: 199
Joined: Jan 2011

That sounds more encouraging Paul. It made my heart sing just reading your last post. God bless you both and know that we all have your back!!

sleepless in jersey
Posts: 185
Joined: Feb 2011

Thats good...
Your such a great Husband really! Remember take care of yourself and stay well your beautiful wife needs you and so do your kids.
My Mom always reminds me "One day at a time"
God Bless

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

I've been on the pity pot lately but I'm getting myself together again. And yes.... "One day at a time." :)

grannylove
Posts: 183
Joined: Apr 2011

NayPaul, Glad to read your post! Sounds so very encouraging for the both of you. I pray that she improves on a daily basis and that this new med is her key. You are a positive force for her and are to be applauded. The love you have for your wife and children is beyond comprehension and fills my heart with awe. May God reach down and touch your family. Stay strong NayPaul and know that our lives have also been touched by you and your wife. Prayers are with you. Cheryl

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

I read a lot of good things about this stuff and hope your insurance company approves it for you. I was not aware the FDA already approved it for people with Lung cancer

All the best
Hondo

persion
Posts: 2
Joined: Sep 2009

I am very worried over my friend. I feel the subject staying calm is very appropriate.
She has stage 4 non small cell carcinoma of the lungs. Tarceva worked for about 8 months.2 different chemos and now to try for a experimental drug (but which one) ?
At this time she is doing great and has only shortness of breath.Vital signs good, no fever, pneumonia one time.
I am very anxious to what others are using that gives more extension for life and quality.I wish for a miracle and there is always that hope as we need more miracles in our lifetime.If you have any advise to give or any thing that could help please email me. I wish you , yourself the best and hope to find on here inspiration.

z's picture
z
Posts: 1261
Joined: May 2009

I certainly want all that needs this medicine to get it and have their insurance company approve it. Chemo is just as expensive and actually even more expensive, so it really shouldn't be an issue. I read where it would be a 100 dollar co pay if the insurance accepts it.

hopefullma
Posts: 13
Joined: Jan 2010

i am on tarceva now did it work pretty good then? the side affects are kicking me.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

If the side effects are really too much for you, you can ask your doc if he would lower the dosage for you - that's what I did. It was lowered to 100mg, every other day (or maybe three days on and one day off, I don't remember), and eventually began taking 100mg every day. Hopefully your doc is willing to be flexible :)

Best of luck, stayingcalm

smneider
Posts: 20
Joined: Aug 2011

My Mom may start taking Tarceva once Chemo treatments are done. Do you mind sharing the side effects you have experienced?

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Tarceva affects fast-growing cells, like eyelashes and fingernails & skin - my eyelashes got very long and tangly, enough that I had to trim them regularly to keep them from curling back and poking me in the eye! My fingernails were more brittle than usual. My skin got very dry and flaky, for which I used vitamin E oil and Eucerin (Dry Skin Therapy), and washed with Dove or something similar.

When I began taking Tarceva I was on 150mg/day, which made me break out like a teenager and made my eyelids swell up in a histamine-type reaction - it wasn't pretty :) The oncologist and I eventually settled on 100mg/day (for a long time I was taking it for 3 days at a time, then a day off, then 3 days, etc). Within this last year it seemed the Tarceva was beginning to fail, so I took a 2 month break without consulting my doc (NOT a recommended behavior!) to try to jump-start it again. Will be re-starting it this weekend...

You may want to keep imodium on hand for mom, as Tarceva can have diarrhea as a side effect...she shouldn't eat grapefruit because it reacts with Tarceva in some way. Acidic foods (especially tomatoes) and strong spices can cause her stomach distress.

If I think of anything else I'll post!
stayingcalm

bakcarsol
Posts: 1
Joined: Apr 2011

I have stage IV lung cancer, non smoker, EGRF positive. Started 150mg Tarceva six months ago. The results so far have been incredibly positive but I know at some point I will become resistant.

My skin and hair are most affected- dryness and cracking, especially on fingers and toes. I have gotten the rash on my face but control it with anti-inflammatory creams. Fatigue is another problem and it varies from week to week. Then there is a slight nausea/aversion to savory foods. It is definitely at least a part-time job managing but I am functioning fairly normally.

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Staying Calm,

Great news! I do bot have the ALK gene, but it is good to know that may not be a necessity for the drug to be effective. I have been through several chemo "cocktails" with none of them having too mch success. (well, no shrinkage at any rate) Finished 33 radiation treatments about a mionth ago and now have a couple of new unknown "spots" on my lung.

So, I'll keep checking on other possibilities for treatment and keep moving forward. As I heard on this board (I believe from Joe), my job is to stay alive long enough to have a treatment developed that is successful. I believe that day is coming!

Great to hear from you and I wish you well always.

Regards
John

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

So happy that they have come up with something to help you stayingcalm. I hope it works as well as the last one.

Stay Strong.

c

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I haven't yet talked to my doc about trying to get on Xalkori...but I'm still hopeful!
stayingcalm

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Sending positive vibes your way Deb. Let us know what the doc says. <3

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

I'm sending positive vibes also.

Insom
Posts: 1
Joined: Sep 2011

Hello Everyone,
I'm new to this forum and I plan on trying it out. My sister and I are getting close to burnout taking care of my mom. It's almost been two years since my mom was diagnosed with stage 4 mesothelioma and as of 3 days ago is now in the Final stages of her cancer. My mom's story is a tragic one as it normally is. Great human being, a labor delivery nurse, great mom, kind and caring to anyone around her, and devoted Christan soldier.
She found out the week of her bday and mothers day she was at stage 4 and was given 9 months to live. 11 to 12 with treatment. She has almost made it through 2 years after that day. But her torso is covered in tumors and they have filled the inside and outside of her lungs with fluid. It's on her heart,both lungs, ribs, esphogus, and lymph nodes. Then traveled through her lymphatic system and into her brain. She's going through the early stages of Dementia.
We have tried direct radiation, full brain, chemo, etc. With no luck! Even worse two months ago Dr. Pu an Oncologist in Downtown Sacramento told my mom and sister he cured her brain tumor and never told us about a leztion on her frontal lobe. But he told us he cured her brain completely. A month goes by and my mom is getting confused and lost. My sister and I start to get worried. We talked to her doctors and they tell us it's the medications.
Well, last Saturday Im watching my mom, so my sister can get a break. I'm sick as a dog atm. I go to check on my mom and she's not making any sense. This is a woman that graduated from collage and has been one of the smartest people I have ever known. So I call my sister to take her to the hospital. She does. Then we find out the next day that her brain tumor's are still there and there's been one that was drastically worse that we never even know about and was never told about.
4 days have passed since then and my mom isn't even the same person she was when she went in. She doesn't even recognize me anymore. The look in her eye's is a blank stare filled with confusion and fear. It's emotionally disemboweling! We are going to talk to her doctor about that miracle drug ou guys where talking about, but at this point were not holding our breath with all things considering.
I mainly came on her to vent and find an online chat to help my sister and I to avoid burn out or worse things from happening. The only saviing grace we have right now is a catch 22. The brain tumor's are causing dementia and hopefully.... she will forget this part. Compared to 4 days ago where she was petrified in fear curled up in the fetal position crying saying " I don't want to die yet. " Ever since then I have felt like I have been bleeding out and the wound won't clot.
The worst part is my step father died this exact same way three years ago. Got lung cancer, got cured, a few months later it turned into full body cancer, and then he passed soon afterwards. Now my mom is going through the same thing except this time I have a front row seat. My step father abused me, so I didn't take his passing as badly as my mom. We don't know what to do. So we are going to try these chats and forums out to see if it helps.

lekkerone
Posts: 199
Joined: Jan 2011

Reading your post was heartbreaking. I feel so badly for you and your sister. Have you contacted Hospice?. I have read and heard many wonderful stories about them. Someone in the hospital can direct you to them. Others on this forum will have had experience and tell you what exactly to do.
God Bless.

Hope4Marge's picture
Hope4Marge
Posts: 74
Joined: Jul 2011

Hang in there. You are a wonderful daughter (as is your sister). This is heartbreaking to read and I am so sorry you have to go through this with your mom. God bless you all.

tjerunner262
Posts: 6
Joined: Sep 2011

Hello stayingcalm,

Any luck with pf1066 ?

My wife was on tarceva for 4 years but cancer developed resistance to it. She was diagnosed in June of 07 with lung cancer and has the EFGR mutation.

We were pursuing a clinical trial using erbitux and BIBW 2992, but the trial was too far to travel. The FDA is of no help for patients running out of hopeful options. (sorry for the editorial)

My wife Helen is now on erbitux (two sessions) and she seems to be breathing better. However we are now seeking to combine Erbitux with Lapatanib (tykerp). Studies have shown this combination was successful for patients with resistance to tarceva if they have t790 mutation. But the insurance will not cover tykerp since it is for breast cancer.

So I am going to ask our oncologist about PF1066.

Let me know how it works out for you.

Thank you

z's picture
z
Posts: 1261
Joined: May 2009

I am sorry to tell you that Deb (stayingcalm) has recently passed. Please look at the threads my heart is breaking, and dust in the wind. This was so sudden and my heart just aches. Lori

Hope4Marge's picture
Hope4Marge
Posts: 74
Joined: Jul 2011

I had no idea Deb was near death. She was always so optomisitc and even up to her last week she was reaching out to help others.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network