Jump to content

Recommended Posts

I'm new to the group.  I was diagnosed with Stage 4 non-small cell adenocarcinoma with the Exon19 deletion mutation in February 2016.  I have been on Afatanib (Gilotrif) since March. 

 

Link to comment
Share on other sites

Good morning, Doris.  I'm glad you found this site; it has been a real lifeline for me.  I was also diagnosed with stage 4 NSC adenocarcinoma in February of this year but mine did not have any mutations; I apparently have the "plain" version.  I've read many posts about others with various mutations and the treatment options and hope that you find success.  Have you had any scans since you started treatment?

Link to comment
Share on other sites

Hi, Doris,

Welcome to LCSC! This site features online message boards where members can ask questions or talk about various topics. There are also member blogs, photo galleries, and a calendar of upcoming lung cancer awareness/fundraising events. LCSC is a great place to connect with other patients/survivors and share stories and advice. Is there anything in particular that you'd like to know more about? Are you looking for resources/information on a particular topic?

We are here to help!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

Link to comment
Share on other sites

  • 1 month later...

I started Gilotrif 2 weeks ago and have been getting all of the promised side effects.  The current plague is a rash on my scalp that makes sleeping difficult.  I use cortisone cream for itching and ice packs.  Doctor also prescribed an antibiotic but I'm not sure how that's supposed to help.

That said, my rib cage pain eased after only 3 days and now I cough less, breath easier and am less tired.  I guess I shouldn't complain.

Do the side effects ease over time?

 

 

Link to comment
Share on other sites

Gage welcome here!

For Gage - do the Gilotrif side effects ease over time?  My experience with a similar oral chemotherapy drug -- Tarceva -- was a continuation of what was called, in the drug literature, "skin rash" throughout the entire time I took it.  Skin rash was a very inadequate way of describing my symptom.  And it sounds inadequate also for your "plague." I had my Tarceva in combination with the conventional chemotherapy drugs Taxol and Carboplatin.  So, after losing my hair, my "skin rash" morphed into the worst case of head, face and neck acne the world's ever seen.  I looked like a zombie, most embarrassed to show what passed as my face in public.  Gilotrif seems to be working so stay connected and let us know how you are doing.

Stay the course.

Tom

Link to comment
Share on other sites

Photolady,

We welcome you.

Your words "just diagnosed and no details" speak volumes to lung cancer survivors.  We completely understand what is rushing through your mind as you navigate the sea of vast uncertainty and unpredictable outcomes that is lung cancer.  We survivors here are the subject matter experts in lung cancer.  Not by training, but by on-the-job experience. You will go down the path of "staging and typing" so your oncologist can decide on treatment.  This could take up to a month.  You'll have lots of questions.  At this juncture I offer this for your consideration: if I can live, so can you.

Stay the course.

Tom

Link to comment
Share on other sites

Thanks, Tom.  My rash is not nearly as bad as you describe.  It looks like acne and itches and burns but seems to be letting up a bit after about 3 weeks of Gilotrif.  With a little of my wife's makeup  I even made an appearance New Years Eve.

I was prescribed Doxycycline "for the rash" and didn't quite see the connection.  I can understand if the purpose is to head off infection but when asked, my oncologist said that the Doxycycline appears to have a beneficial effect on the rash that goes beyond the antibiotic itself and that they don't really understand why.  I love a mystery...

Gage

 

Link to comment
Share on other sites

  • 2 weeks later...

I joined last June, but this is my first post. I'm 62, dx January 2016.  Stage 4 nsclc, adeno, pleural effusion, inoperable 3cm tumor & sub-centimetre nodules in both right & left lungs. No mutations.  PDl-1 positive 80%. After the initial  pleural effusion was drained right upper the lobe remained collapsed.  Treatment was 4 Carbo/Alimta, 2 rounds of radiation & Alimta maintenance X 5.  Some Pleural effusion always lingered on scans while the 3 cm &  the sub-centimetre responded . In August I was hospitalized for pneumonia & pleural effusion,  then  immediately after I was diagnosed with pneumotitis. I was off treatment for 4 months., last Aug12.  SOB & rapid heart rate started with the pneumonia. SOB improved -EKG was normal in September, but rapid heart rate remained, usually 115 on exertion, 100-105 at rest.  Onc explains it's because of the disease my heart is working harder. Climbing stairs in our home always challenging.  While on prednisone for pneumotitis SOB returned  in mid-November due to  a pleural effusion, drained. Then another, drained. Tapered off prednisone, chest tube inserted for pleural effusions Dec 7. . Regular drains now every 2 days. Started Keytruda Dec15. Rapid heart rate remains, has been 135 on exertion. At rest 105-115.   SOB Did not improve with chest tube as it was supposed to. Oxygen was recommended due to Change in my O2. Since chest tube was inserted o2 is tracked by visiting home nurse & is down to 90. On exertion lower with rapid heart rate. 2nd Keytruda January 6. I do not feel any side effects from Keytruda.  My SOB has just declined. My last CT - right lung was difficult to see due to a pleural effusion, left lung has some spots.  My onc was onc was on vacation my last visit & I will see home this week along with pulmonary.   However, since my September scan the right lung is not getting much air & is operating at about 10%.  I am wondering if anyone has had these problems.  At first I was using oxygen for exertion, now I'm using it all the time due to changes to more changes in o2.  Can I become oxygen reliant? I only do the stairs once a day Very slowly.  Thanks, much appreciated.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited by April
Am I in the right forum. I want to introduce myself.
Link to comment
Share on other sites

April,

Any forum will do and you are most welcome here.  

OK - you've got a lot going on.  I've had many of your symptoms.  I was even prescribed O2 and for a while was tethered to a very long plastic tube that entangled itself along every running foot in my home from oxygen generator to wherever I navigated.  But, I am no longer on O2.  I do experience shortness of breath (SOB) and have a high heart rate but one lung with about 38-percent pulmonary capacity will do that.  I've learned to adjust my lifestyle and at 66 years old nearing 13 years of surviving late stage NSCLC, I enjoy the life I have.

I note you are on Keytruda, the new immunotherapy drug that yields very promising results for those with PD-1 indicators.  I love the PD designation by the way for it means Programmed Death.  Although the drug does not set a future death sentence for your cancer cells, the idea of programming death of lung cancer cells is an irresistible analogy that I do love to contemplate.  They ought to give the scientist who came up with the monicker a well deserved Nobel prize.  Sometimes revenge is so very sweet!

As well you know, pleural effusions and pneumonia go hand-in-hand with lung cancer.  I've been discharged with emplaced chest tubes.  I even had one fall out while taking a shower!  That was unsettling, in the extreme!  And pneumonia, I've had in all its many flavors.  When I get it, it takes me a month or more to resolve and I've even been hospitalized a number of times for treatment.  I've learned to avoid school aged children because a minor cold yields a flavor of pneumonia for me.

So, where do we go from here.  While not diagnosed stage 4, I suffered 3 recurrences in my remaining lung after a pneumonectomy of my right lung.  My lung was removed successfully but the bronchus stump sutures broke causing a bronchopleural fistula, three more surgeries to repair, then 4 stent insertions to bolster the repair.  This year-long surgical interlude precluded my post-surgical (dust-up) chemo and likely caused tumor metastasis to my remaining lung.  So, in total, nearly 3 years of continuous treatment totaling 18 infusions of taxol and carboplatin, two forms of radiation, and the oral chemotherapy Tarcevia to reach NED (no evidence of disease).  

Two points to close.  Jimmy Carter survives because of Keytruda and if I can live so can you.  And you are indeed most welcomed here.

Stay the course.

Tom

 

 

Link to comment
Share on other sites

On 1/15/2017 at 2:24 PM, April said:

I joined last June, but this is my first post. I'm 62, dx January 2016.  Stage 4 nsclc, adeno, pleural effusion, inoperable 3cm tumor & sub-centimetre nodules in both right & left lungs. No mutations.  PDl-1 positive 80%. After the initial  pleural effusion was drained right upper the lobe remained collapsed.  Treatment was 4 Carbo/Alimta, 2 rounds of radiation & Alimta maintenance X 5.  Some Pleural effusion always lingered on scans while the 3 cm &  the sub-centimetre responded . In August I was hospitalized for pneumonia & pleural effusion,  then  immediately after I was diagnosed with pneumotitis. I was off treatment for 4 months., last Aug12.  SOB & rapid heart rate started with the pneumonia. SOB improved -EKG was normal in September, but rapid heart rate remained, usually 115 on exertion, 100-105 at rest.  Onc explains it's because of the disease my heart is working harder. Climbing stairs in our home always challenging.  While on prednisone for pneumotitis SOB returned  in mid-November due to  a pleural effusion, drained. Then another, drained. Tapered off prednisone, chest tube inserted for pleural effusions Dec 7. . Regular drains now every 2 days. Started Keytruda Dec15. Rapid heart rate remains, has been 135 on exertion. At rest 105-115.   SOB Did not improve with chest tube as it was supposed to. Oxygen was recommended due to Change in my O2. Since chest tube was inserted o2 is tracked by visiting home nurse & is down to 90. On exertion lower with rapid heart rate. 2nd Keytruda January 6. I do not feel any side effects from Keytruda.  My SOB has just declined. My last CT - right lung was difficult to see due to a pleural effusion, left lung has some spots.  My onc was onc was on vacation my last visit & I will see home this week along with pulmonary.   However, since my September scan the right lung is not getting much air & is operating at about 10%.  I am wondering if anyone has had these problems.  At first I was using oxygen for exertion, now I'm using it all the time due to changes to more changes in o2.  Can I become oxygen reliant? I only do the stairs once a day Very slowly.  Thanks, much appreciated.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hi, April,

Welcome to LCSC. My name is Lauren and I am the Digital Community Manager for LUNGevity Foundation. I am happy to "show you around" and help you get started with our online community. We encourage all new members to create an Introduction post in the Introduce Yourself board. To create a new thread or conversation, click the orange Start New Topic button at the top right of the page. You can also join existing conversations by scrolling to the bottom and clicking in the Reply to this topic box. The discussion boards are a great place to ask questions and learn from others' personal experiences. I'm glad to see that you've already met Tom. He's one of our administrators and he's been an incredible help to many members in this community! In addition to the discussion boards, we also have member blogs, photo galleries, and an event calendar. We're updating the calendar this week with nationwide lung cancer events, so check back next week! I hope that you make many meaningful connections on LCSC. Please do not hesitate to contact me with questions about how to use this site.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

Link to comment
Share on other sites

Last Wednesday I found out my cancer has spread & has lymph nodes in my stomach & "suspicious of" in the liver. I was unable to ask a lot of questions as my husband & I were in shock. I know in the beginning I heard those words "suspicious" & it was cancer. My onc assures me that I am on the best possible treatment so does my husband, but Keytruda is for lung, head & neck & melanoma. Chemotherapy & Keytruda is not an option currently. My onc goal is to keep me where I'm at.  Is that even possible???   Where do I go from here????  I'm in big trouble I know.     We are back at the the onc Wednesday.  

Thanks

 

Link to comment
Share on other sites

April,

A funny thing about cancer.  When it spreads from a primary location to distant parts of the body, it spreads as the original type.  By that I mean, a lung cancer tumor that metastasizes to say the liver will be a lung cancer tumor.  So, Keytruda is a newly discovered drug that can be very effective and will attack all your lung cancer tumors regardless of where they are in your body.

Is it possible to stay where you are?  Yes.  I know many who receive infused and or oral chemotherapy as a chronic treatment.  That means the treatments are not eradicating the cancer but prohibiting it from growing.  I know well one lady who and one gentleman who have lived more than 10 years through chronic treatment.

Where do you go from here? Stay involved and engaged in your treatment.  

There is no such thing as big trouble.  You have a disease, you are involved in treatment, and you may experience very good results.  You'd be in big trouble if there were no treatment.

I know how hard this is.  I've tread your path.  I caused myself needless worry and lived the doom and gloom life-style for 3 years while in treatment.  I look back at that period and realize the missed opportunities life afforded.  If I could convince you of one thing, it is that chemotherapy often extends life.  No one is certain for how long but then, no one alive is certain about how long.  What is most important is what one does with the life extension.  Look for something to enjoy each day, then celebrate.

Stay the course.

Tom

Link to comment
Share on other sites

Tom,

I've read your reply many times. It helps me understand this disease so much more. What you explained about not eradicating the disease, but prohibiting it from growing is exactly what my oncologist had said.  I wasn't open to receiving it.  I have been devastated since my last onc appointment.  Although I still have my fears, at least I understand and somehow the burden is lighter.  Thanks so much for your help, it is so very kind of you.   I keep praying for myself, for you and all of us who have this ugly disease.

Blessings

 

 

Link to comment
Share on other sites

I was diagnosed with stage 4 in Sept 2015. At the time the prognosis was grim, 6-18 months. It's Jan of 2017 and I'm doing well. I was on Afatanib for about 7 months before new mutation showed up. Now on Tagrisso. Next scan in 2 weeks.

When I was initially diagnosed I told my friend, who happens to be a nurse specialist in oncology that,"My goose was cooked!" She adamantly disagreed. She responded that she would be honest with me and tell me "when my goose was cooked". Apparently "my goose" is still alive and well. 

My point being, it is really difficult to have hope when the diagnosis is revealed. It gets much easier once you've had some success with treatment.

I feel so fortunate that we are in a time when new treatments are being developed frequently!

Best Wishes and Prayers,

Lydia

Link to comment
Share on other sites

Lydia,

Your goose has laid the golden egg!  You are so right about feeling hopeful upon diagnosis.  I'm looking forward to hearing good news about your forthcoming scan.

April,

Here is my picture of hope for you.  I embraced the tradition of painting a toenail red on the anniversary of my diagnosis date.  I did so upon joining an online cancer support group called RedToeNail.org.  Unfortunately, this site is no longer active.  I'm color blind so my first paint job (joined my 2nd year of survival -- my first was 3 toes) was "hot" pink.  My wife and I just competed the photography for my thirteenth anniversary that officially occurs on February 4, 2017.  If I can live, so can you!

Stay the course.

Tom

Three to Thirteen Red Toenails.jpg

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use. We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.