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PostPosted: Mon Sep 30, 2013 3:48 pm 
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Joined: Mon Jul 29, 2013 4:42 am
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Hello Everyone -

I am writing in to ask if anyone has yet had any experience with a new Chemotherapy oral drug, Gilotrif?

My mother, who was diagnosed with Non-Small Cell Lung Cancer in 06/2013 has been identified as a #1 drug choice as per her Foundation One Genetic test on her tumor type.

She did not have much success with the first line treatment chosen which was Carboplatin/Taxotere. Her radiated areas did respond for the most part, but the Chemotherapy drugs did not really act on her cancer cells well.

This new drug seems very promising, but it really has some major side effects like any other drug, but I am just wanting to see if there is any experience with it out there yet.

I appreciate you all more than you know... I will admit this is my first post, I have been really just reading your inspiring words, and so many questions have been answered for me just by reading through this community - so I thank you from the bottom of my heart.

John M. Randazzo

My mother Marie Randazzo


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PostPosted: Mon Oct 14, 2013 5:41 pm 
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anyone hear of this new drug?????

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!


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PostPosted: Tue Oct 15, 2013 6:33 am 
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This drug was approved by the FDA earlier this summer for patients who have the EGFR mutation. I have to admit I haven't heard a lot of feedback about it yet. Most EGFR patients I know take Tarceva, but from what I understand this drug was developed for those who have developed metastasis.

I encourage you to submit a question to our experts for their opinions about Gilotrif (Afatinib)

http://expertblog.lungevity.org/ask-the-experts/

and please keep posting and keep us updated on your mom. I hope this treatment is a complete success for her.

Hugs


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PostPosted: Tue Oct 15, 2013 9:53 am 
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Thank you so much for your kind words and thoughts! We had originally started this road with Chemotherapy in the form of Carboplatin and Taxotere. She had a really strange type of cancer and metastases. Initially it started back in May, 2013, in which she came home with a "bump" on her head that was not going away. After seeing her primary we originally thought it was a hematoma from her bumping it at work, but when another one appeared just next to it, we finally had a biopsy. The first turned out to be a Squamous Cell Carcinoma, and was treated as such with a Mohs surgery. On that day of the Moh's surgery, the other newer bump was biopsied, and after that came back, it was another Squamous Cell, but this time poorly differentiated. When that Moh's was done, it was such a large and agressive site, that it was touching her skull bone.

This really concerned all involved at that point and she was sent for an Oncology consult in June and after all testing, it was confirmed that she had a Squamous Cell Lung Cancer, with metastases to her right femur bone, the right pariteal scalp area (where the most agressive squamous cell was), her L5 area, and minute area in her gluteal muscle area.

We were unbelieveably overwhelmed. Nonetheless we started treatment immediately. The plan was to use the Carboplatin and Taxotere weekly, along with Radiation to her Femur Bone which greatly stopped what was at this time her only pain. There was also radiation to the Right Parietal Scalp area, and the L5 area.

In between all this, I did have a second opinion completed, and he agreed that the treatment seemed sound at the time, though he indicated he would not perhaps have started "with those drugs" but admits that those were a standard for lung cancer. He did tell me though, that he would for certain order a genetic test on her tumor type.

We did in fact decide to order that genetic test from Foundation Medicine, and they ran it on the metastatic site that was seemingly the most agressive (the second scalp area).

After 9 Chemo treatments and the radiation treatments were complete, we recently had another full body PET Scan, and MRI to her Chest and they found that the Chemo treatment was not effective. Though the lung mass did not enlarge, it was still active, and now, there were new metastatic spots behing her left thigh, and at her groin area.

We were just a mess... I cannot believe all this happened so quickly....

In any case, right about this time, the genetic test came back and identified her tumor type to be that of the EFGR mutation, and it showed the Gilotrif as a potential #1 drug for treatment. Interestingly enough, it did not show Carboplatin or Taxotere anywhere on the report...

There were other secondary drugs listed to try but that they were not specific to her tumor type...

As of now she is in alot of pain behind her left thigh, and the groin area, so the Radiation Oncologist is treating those areas NOW. He is also finally treating the lung as well.

I can never really understand WHY (or could never really get an answer fully) about why the lung was not radiated in the beginning anyway...

So ALOT of work later, we have finally gotten the Gilotrif, but this was after 3 appeals, and after me personally contacting the Boelinger-Ingleheim's CEO and making an enormous plea to get these pills. (They are in pill form).....

So we will start the pill in the next few days, and I am praying, hoping, as everyone, that this will start to get this under some better control...

She has been so strong through all this, I just hate the painful areas right now. So I am hoping the radiation will sort of kick in soon.... This is so hard, and although I feel like this has felt like about 3 years so far and really it's been only 5 or so months, it's just so hard...

I am thankful that there are places like Lungevity to share the hope with and to have such wonderful people to share with.... I am very appreciative of you and thank you for letting me share...

John Randazzo


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PostPosted: Tue Oct 15, 2013 10:56 am 
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I'm so sorry that your mom is going through this and I hope the radiation quickly takes care of the pain. She has been through a lot in the past 5 months, but it is good news that she has an EGFR mutation. As a rule, they don't usually expect people with squamous cell to have the EGFR mutation, and some doctors don't even encourage testing for squamous cell. I am very glad you have posted your mom's story as it shows that you just can't assume anything - there are always exceptions and if you are one of those exceptions it can mean a lot. I hadn't heard of Gilotrif, so the fact that there is another treatment option available is great news. I know they all have side effects, but not everyone suffers from all of those - some people just breeze through, and others just have a few issues. Hopefully your mom will have an easy time with it and a good response.

Please let us know how you are both doing.

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, oncologist believes it is a new cancer not recurrence
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09, 12/07/09, 3/1/10, 6/1/10, 8/23/10, 10/25/10 and 1/20/11 CT scans - all stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12, 10/30/12, 2/26/13 CT scans - all stable.
8/23/13 CT scan - new opacity suggestive of infection, treat with antibiotics and re-scan in 8 weeks
10/21/13 CT scan - opacity gone - still Stable!!!

Avatar is with 10-mo-old grandson Ethan at Xmas


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PostPosted: Tue Oct 15, 2013 3:00 pm 
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Joined: Mon Jul 29, 2013 4:42 am
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dianew wrote:
I'm so sorry that your mom is going through this and I hope the radiation quickly takes care of the pain. She has been through a lot in the past 5 months, but it is good news that she has an EGFR mutation. As a rule, they don't usually expect people with squamous cell to have the EGFR mutation, and some doctors don't even encourage testing for squamous cell. I am very glad you have posted your mom's story as it shows that you just can't assume anything - there are always exceptions and if you are one of those exceptions it can mean a lot. I hadn't heard of Gilotrif, so the fact that there is another treatment option available is great news. I know they all have side effects, but not everyone suffers from all of those - some people just breeze through, and others just have a few issues. Hopefully your mom will have an easy time with it and a good response.

Please let us know how you are both doing.


THANK YOU so very much for your kind words Diane - they mean ALOT! I am really so HAPPY to have found this forum... What beautiful people and support!


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PostPosted: Tue Nov 26, 2013 2:19 pm 
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Just in case anyone else is starting or on Gilotrif....

My mom has been on the Gilotrif since 10/16/2013. It's really hard to know if it is doing what it needs to as we have not gotten any more scanning as of yet and the Oncologist tells us (as well as what I have found out from the clinical trials) to wait about 6-8 weeks for it to even start to work....

Side Effects: I feel like she has gotten most of the side effects! In the first 10 days, she started with Diarrhea this has been very well controlled, though, with Immodium, and when she does have it, it occurs usually no more than 2 times in a day. I think we have found that pushing the extra fiber and giving metamucil may help but not totally sure.. It may be coincidence but she has not had any for over a week now... Over the next few weeks she started to have some NAIL issues with them becoming a little dry and subsequently crusted on the edges of two if them. The Eucerin Lotion and Neosporin helped with this. She then got HIVES at different parts of her body.... Originally we thought it was the addition of Folic Acid because every time we took the new Folic Acid away, they stopped, but the Oncologist insists its from the Gilotrif... That's another conversation! Anyway, for the Hives, we had some good relief from using AVENO Calamine and Premoxine HCI Lotion over the counter... We rubbed this all over and it's like an eraser to the hives! What finally stopped the hives, though, was the addition of 24 hour Zyrtec at bedtime.

So here we are about almost 6 weeks into it, and she is stable with her side effects.... I am just hoping that this is doing something in her! I hate the not knowing part....

As a summary this is what we are doing for her symptoms:

DIARRHEA: 1st Loose Stool = 2 Immodium, followed by 2 Gatorade Bottles, and general increase in fluids (water, popsicles, jello) NO DIET CHANGE

2nd Loose Stool = 1 Immodium, followed by another bottle of Gatorade or Pedialyte, and general increase in fluids (water, popsicles, jello) NO DIET CHANGE

3rd Loose Stool (rare for us) = 1 Immodium with another Gatorade and change over to BRAT diet for the rest of the day... I pretty much give her White Rice and Chicken Broth for the duration....


SKIN ISSUES: The KEY is using Lotion daily... We use Eucerin all over her body. We have also used COPIUS amounts of Vaseline with socks over them at night on her feet since they were already DRY!

For HIVES: Try the Aveno used for Poison Ivy/Oak lotion. It has Calamine Lotion and Pramoxine in it. Lastly we had great success keeping the hives completely away (so far) with adding Zyrtec 24 hour at night.

FOR LIPS: We are using Vaseline on her lips as it seems to help the best...

FOR NAIL ISSUES: We are making sure to keep them SHORT! (The Gilotrif is GROWING her nails!) and clean and lotioned.

Hope this helps some.... I would be more than happy to be contacted for more questions, but EQUALLY more happy for you to share your experiences and keep this conversation going.... I hgave found that on occasion I know more than the doctors from my reading and keeping in touch with the company Boelinger/Ingleheim. I keep in close contact with a nurse at Solutions Plus every week without fail about her side effects, and I also am able to talk to the medical team while on that call if I have technical questions... This has been a tremendous help...

Since the drug is so now, I find that the support staff in the doctors offices are a bit vague on things...

Thank you all for your support - This is so tough... but with discussion areas like this, somehow I get greater comfort from feeling helpless and alone.... Much love to you all and god bless....

John Randazzo


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