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TABRECTA


Robert  A.

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I’m so sorry things are not going well for your husband. I hope the radiologist has a plan moving forward. 
Maybe the scans will give you some clarity 

Here’s hoping for some better news. Hang in there

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Thanks, Lin. He skipped the morning dose today and finally was able to keep down some solid food. Not sure where we go from here. 😟

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Hi Robert and MarieE,

I’m new to this forum.  I want to let you know that my mom is on tabrecta as well.  She started on 6/15.  She seems well with it.  The only side effect is some small rash.  However, the oncologist is thinking it may not be strong enough, because my mom still feels some discomfort in her right leg that he thinks it might be from cancer growing or muscle recovery from the hip replacement surgery in February and radiation in March.  I’m hopeful her discomfort is due to the later one. We will know from next ct scan in about two weeks, and I’ll keep you posted. 

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Well 3 bottles down 168 tablets of Tabrecta and no side effects, my  wife will be scanned in late August hopefully it's doing it's thing. Wife is doing great feeling good and no more coughing.

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On 6/23/2020 at 8:19 PM, Robert A. said:

Our's was covered by Optimum RX which is the company that covers our prescriptions.

Do you mean Optum RX? That's the plan I have. I'm not grading you on spelling, just wondering if it's the same plan.

 

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8 minutes ago, LexieCat said:

Do you mean Optum RX? That's the plan I have. I'm not grading you on spelling, just wondering if it's the same plan.

 

Yup that's the same one.

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1 hour ago, Robert A. said:

Yup that's the same one.

Good to know they are with the program--on top of the latest drugs. No clue yet what they'll order for me, but I do find your experience reassuring.

 

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46 minutes ago, MarieE said:

Unfortunately my husband couldn’t tolerate the side effects. 😞 

Sorry to hear that, are you sure it is the Tabrecta and not the other treatment he's getting? There are other targeted therapy drugs, I hope that if it is the Tabrecta they can switch him to another. Keep on going and stay positive.

 

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Yes. We had stopped everything for a week and then he took one pill and started vomiting violently again. Switching to Xalkori and hoping for the best. 

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  • 5 months later...

Hello all:

My father has non-small cell lung cancer, and tried Keytruda, which did not work for him. As of September 2nd, he is on Tabrecta.  We've worked through Novartis for funding of medication and Pan foundation.  https://www.panfoundation.org/

https://www.hcp.novartis.com/products/tabrecta/met-exon-14-skipping-mutation-nsclc/access/

Before we received funding from these groups his insurance (Medicare & Supplemental) paid for most of it, and we were so anxious to obtain the medication, I just paid the co-pay. Now I am working through Pan foundation for reimbursement.  

The first PET scans were very promising - most tumors down by 50% and some undetectable by scan (too small to detect).

He had a big turn around with this medication, however November and December issue have developed.  I cannot determine if these problems are a side effect of Tabrecta or some other issue at this point. 

Issues are;  Edema (swelling) in legs and groin and some trouble breathing. I will read through your posts to see if anyone else has had similar issues.  Both these issues had us taking a week break from the medication.  We will re-start today (if he's agreeable) at a lower dosage.  Previous dosage 200mg (2 pills) Am/Pm - Now 150mg (2 pills) Am/Pm.

He is on no other treatments and has not had chemo - only tried Keytruda.

Thank you for sharing your insights. Candee

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Hi Candee, 

While I take a different targeted therapy, there were similar side effects with me.  I had developed pulmonary edema which caused a rapid six pound weight gain, followed by shortness of breath.   

The challenge with targeted therapy is the dosing is one size fits all. With other types of medication, typically the physician prescribes the lowest dose and works up to the most effect dose to avoid sudden onset of adverse side effects. Because targeted therapy is so new, the prescribing pattern is the reverse.  The highest tolerated dose is initiated and if there are side effects at that point, the medication is stopped for a brief time and then restarted.  It's called a re-challenge.  For some reason, the body is able to adapt to the side effects after a brief hiatus.   

I had a five day treatment break, resumed therapy without any issue.  I do have to take lasix and potassium every day which means lab draws every six weeks to ensure the potassium levels are within the normal range.  

I hope your Dad gets back on track quickly!

Michelle 

 

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Hi Candee and welcome to our group. First of all is Tabrecta not covered by Medicare or the medicare supplement?  Second I looked up Tabrecta side effects and most of what you described are listed. Unless the side effects are unbearable maybe you should continue the same process. Most of us have side effects from one treatment or an other but we use medication to lessen the pain.  Your oncologist should help you.

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1 hour ago, Rower Michelle said:

Hi Candee, 

While I take a different targeted therapy, there were similar side effects with me.  I had developed pulmonary edema which caused a rapid six pound weight gain, followed by shortness of breath.   

The challenge with targeted therapy is the dosing is one size fits all. With other types of medication, typically the physician prescribes the lowest dose and works up to the most effect dose to avoid sudden onset of adverse side effects. Because targeted therapy is so new, the prescribing pattern is the reverse.  The highest tolerated dose is initiated and if there are side effects at that point, the medication is stopped for a brief time and then restarted.  It's called a re-challenge.  For some reason, the body is able to adapt to the side effects after a brief hiatus.   

I had a five day treatment break, resumed therapy without any issue.  I do have to take lasix and potassium every day which means lab draws every six weeks to ensure the potassium levels are within the normal range.  

I hope your Dad gets back on track quickly!

Michelle 

 

Thank you Michelle.  I appreciate your insights.  We took a week and 3 day break.  Was planning to start back today, now I am not so sure, as breathing issues seem to continue.  His pulse oximeter readings are good - 97 and up.  I feel that maybe the fluid around outside of lungs is now an issue, even though doctor said it was small amount and did not want to drain with tubes.  He is on a diuretic.   Continued success to you!  

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1 hour ago, GaryG said:

Hi Candee and welcome to our group. First of all is Tabrecta not covered by Medicare or the medicare supplement?  Second I looked up Tabrecta side effects and most of what you described are listed. Unless the side effects are unbearable maybe you should continue the same process. Most of us have side effects from one treatment or an other but we use medication to lessen the pain.  Your oncologist should help you.

Thank you Gary.  Medicare & supplement only covered partially - but now we have Novartis and PAN foundation supplying medication - so we got that covered!  The co-pay before this was 971 dollars  Thankfully I only needed to pay that amount twice and might get reimbursement from PAN foundation.   I posted that info for benefit of others as well.  And yes... our oncologist was  huge help finding the funding... I just was anxious and didn't want to wait for all the paper work to go through!  Trying to sort out this "breathing issue" is most of concern at this point... and the edema.  No pneumonia, just fluid around lungs and other swelling.  Was told lung fluid did not need to be drained yesterday... now I wonder if we might reconsider this.  Best CC

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CandeeC, My wife has been on Tabrecta since June, she gets occasional swelling mostly her feet and ankles. She takes Lasix when needed. Just got off with her oncologist about an hour ago and her tumor continues to shrink, she'll  continue the Trabecta and get another scan in 7 weeks. Her Dr. said her protein levels are up which helps her Albumin levels which also help with her swelling.

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  • 4 weeks later...

I’ve been on Tabrecta since June and the side effects have been a bit harsh. Edema in legs and Hands, Extreme weakness and Fatigue and shortness of breath. Scans are inconclusive nevertheless I continue this regimen. 
eager to hear from others taking Tabrecta. 
 

George B. 

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Thanks for the helpful forum. Also, we are getting assistance through the Novartis Foundation for Tabrecta. My husband, Ken, has the MetX 14 gene mutation for his NSLC and started on Tabrecta 400 mg/day on 10/28.  He had one chemo and Keytruda treatment in Sept and was getting his second round 3 weeks later and started with a Keytruda treatment which they finished and then cancelled the chemo when his MetX 14 test came back. He had a terrible reaction to the Keytruda both times. He was started on Tabrecta on 10/28. He did fine in the beginning, then in early Dec was sleeping nearly 14-16 hrs a day and his face and body was flushed and tingly/itchy constantly. His liver numbers were way elevated. They took him off Tabrecta for a week. He then took one morning dose and broke out in hives and itching all over and couldn’t sleep or rest and was jittery all over. He stayed off Tabrecta for an additional 7 days and started on a reduced dose of 300 mg/day on 12/10. He had a PET scan on 1/13 and it Dr said it showed his tumors at ~95% gone and the lymph node only glowed a little and could be scar tissue. His blood work showed an increase in liver and glucose numbers but was told that was ok as you could be about 5X out of range and still ok to keep taking. He has been on this dose until yesterday 1/27. He began the face tingling and itching feeling plus developed “lesion type” sores on his back, neck and top of his head. We called and got in to see the oncologist immediately, they did another blood work up and his numbers were very high, he is off the med for 10 days and we will see the Dr again on 2/3. 

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Jean,

Welcome here.

Sorry tolerant about the Tabrecta side-effects. I know they are commonly reported but it seems your husband has uncommon magnitude.

I am really happy about his PET result. 95-percent gone is fantastic! Let's hope his doctor can figure a way to mitigate the adverse effects.

Stay the course.

Tom

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  • 2 weeks later...

i started Tabrecta Christmas Eve as they told me i have the MET EXON 14 skipping mutation that this drug would chip away at. Would love to join anyone who is taking this drug to discuss how you are doing

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  • 2 weeks later...
On 2/8/2021 at 8:47 AM, genor said:

i started Tabrecta Christmas Eve as they told me i have the MET EXON 14 skipping mutation that this drug would chip away at. Would love to join anyone who is taking this drug to discuss how you are doing

Sorry for the late post haven't been on the forum for awhile trying to get a Covid shot for my wife. My wife has been taking Tabrecta since June 2020. She was diagnosed with LC October 31 2019, she was started on Keytruda in November of 2019 and was doing good after the 1st scan. After her 2nd scan showed the tumor growing bigger she was given Chemo in May 2020, that put her in the hospital for 5 days. Her oncologist lowered her dose of chemo and she was given another round after her release from the hospital. Her Dr. told her that there was a brand new targeted drug the was a pill (Tabrecta) and it might be a good choice for her treatment and my wife started in June. After 12 weeks if I remember correctly, she was scanned and it showed her tumor had shrunk more than 1/2 it's size so we continued this treatment. Her second scan this past December 2020 her scan showed her tumor still shrinking. She has another scan in late March hopefully it keeps shrinking. I hope this helps a little. Robert.

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  • 2 weeks later...
On 2/17/2021 at 7:18 AM, Robert A. said:

Sorry for the late post haven't been on the forum for awhile trying to get a Covid shot for my wife. My wife has been taking Tabrecta since June 2020. She was diagnosed with LC October 31 2019, she was started on Keytruda in November of 2019 and was doing good after the 1st scan. After her 2nd scan showed the tumor growing bigger she was given Chemo in May 2020, that put her in the hospital for 5 days. Her oncologist lowered her dose of chemo and she was given another round after her release from the hospital. Her Dr. told her that there was a brand new targeted drug the was a pill (Tabrecta) and it might be a good choice for her treatment and my wife started in June. After 12 weeks if I remember correctly, she was scanned and it showed her tumor had shrunk more than 1/2 it's size so we continued this treatment. Her second scan this past December 2020 her scan showed her tumor still shrinking. She has another scan in late March hopefully it keeps shrinking. I hope this helps a little. Robert.

did she have any side affects; after 3 months im showing swelling in ankles. How old is she? Im 67. Ty so much for responding Robert. Its been 2 months and my CT scan last week showed one of tumors smaller second one we couldn't find and the original site still small; lots of scar tissue from radiation so hard to see. great news on wife. does she have a pan coast tumor?

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