Trabecta Side Effects

[eullrich66]

Hi,

I went on Trabecta in June and in my latest scan at the end of September, it showed my malignant tumors were shrinking! As we never expected that result, we are elated. That being said, in the last month, my feet and legs and now my hands are swelling as well as pain in my forearms and the top of my hands. The doctor has been going back and forth with diuretics but is very discouraging because I was told that if this can’t be controlled, they will have to lower the dosage of the Trabecta, the one thing that has worked! I am so disheartened. I have another call into the doctor tomorrow but as I have yet to meet anyone else who is on Trabecta was wondering if anyone out there has been on it and has the same effects. 

[LouT]

Hello and welcome to our forum.  Sorry you need to be here, but glad you found us.  We have people here who, collectively, have had all the treatments available.  For my LC it was surgery without chemo.  But you will soon be hearing from others who will share their experiences and that may help you to work with your team in finding some relief.  

But, let me tell you that I'm so glad to hear that you are experiencing such dramatically good results.  I'm sure your medical team will find a way to balance the drugs efficacy while minimizing the side-effects.  But, in the meantime please be patient.  You'll soon be hearing from others in our forum and in the meantime we do have a sub-forum on Chemotherapy that can be found here.

Stay strong, you can do this.

Lou

[CandeeC]

@eullrich66

Yes - my father has been on Tabrecta since September 2nd.  Cancer tumors shrinking dramatically, but the Edema has become a major issue.  

[Robert A.]

My wife has been on Tabrecta since June with occasional swelling. She takes Lasix as needed. Yesterday the 31st, she had a teleconference with her oncologist to discuss her latest scan. The Dr. said her tumor is continuing to shrink ( this is her 2nd scan since starting Tabrecta) so we will continue with this course. Her Dr. also said that her Albumin levels that were low have risen so that is why she is having less swelling.

[John43]

Hi, my name is John but I go by Jack. I was diagnosed with stage III metastatic left lung adenocarcinoma last June. Prior to 12 weeks of pemetrexed and cisplatin I had a spontaneous right adrenal gland hemorrhage that delayed treatment for a week. In light of that surgery was  deferred and I went thru 15 sessions of SBRT on the lung and 5 on the adrenal gland which I just have completed.  My oncologist wants to start me on Tabrecta in Feb. because I have the MET exon 14 splice site mutation for this drug. How do I join this group?

[GaryG]

Hi Jack: Welcome.  To be part of this group all you have to do is visit and contribute with your story. You can also ask questions and the members with knowledge on the subject will answer. As you can see there are few people on Tabrecta  so you can share your story with them and benefit from their experience. 

[Robert A.]

On 1/11/2021 at 9:02 AM, John43 said:

Hi, my name is John but I go by Jack. I was diagnosed with stage III metastatic left lung adenocarcinoma last June. Prior to 12 weeks of pemetrexed and cisplatin I had a spontaneous right adrenal gland hemorrhage that delayed treatment for a week. In light of that surgery was  deferred and I went thru 15 sessions of SBRT on the lung and 5 on the adrenal gland which I just have completed.  My oncologist wants to start me on Tabrecta in Feb. because I have the MET exon 14 splice site mutation for this drug. How do I join this group?

Welcome to the group. My wife has been on Tabrecta since June and has had very good results, even her oncologist is very pleased. My wife started on Keytruda which worked for awhile then they gave her Chemo which but her in the hospital for 5 days. When her oncologist visited her in the hospital she said there was a brand new targeted drug called Tabrecta she was going to try to get her on. Within a few days she was on it. See if your Dr. or yourself can get you on a program to help with the cost as it is very expensive.

 

[eullrich66]

Hi,

I was the original poster. I have also gone through chemo, immunotherapy, 2 surgeries, and radiation. Trabecta has been working great for me in reducing the newest tumors! The only side effect I am still experiencing is swelling throughout my body. I've had to get shoes 2 sizes bigger than my normal size. But, like every side effect that I endure, I will endure this until this therapy stops working.

[LouT]

So glad to hear that Trabecta has been working for you.  Side-effects aside the reduction of tumors is wonderful.

Lou

[John43]

Started my Trabecta therapy on 2/8/21.  So far no side effects.  Had my first Covid vaccination last week (pfizer).  Yes drug is very expensive.  Our patient advocate at the clinic got Novartis to foot the bill.

[ConcernedSib]

This is a wonderful blog. My sister diagnosed with brain metastasis nsclc in early Dec 2020. Was treated with WBRT for 2 weeks then put on Trabecta end of January. Her spirits very good but has bad & good days. Results not in yet from recent MRI. Virtually no side effects from Trabecta - no swelling. Mornings and afternoons good for her but evenings very tired. I hope & pray rumor is shrinking. My question, if anyone knows, is my understanding is since lung is primary tumor & brain is where tumor metastasized from, is the Trabecta also treating her “lung cancer cells” that are in her brain? Before this she was extremely healthy, & working into her 60s. Hope everyone in this blog does well with this hard diagnosis & continues to reach out to friends, family & medical community.

[ConcernedSib]

Sorry. Meant to say, hope & pray tumor is shrinking (not tumor-typo)

[LexieCat]

Hi, Sib,

To my knowledge, most cancer drugs, including targeted therapy drugs, don't cross the "blood-brain barrier" very effectively, if at all. That's why radiation is so important to address the brain mets. I believe that researchers are working on developing drugs that can work directly on brain mets, but right now I think it's still in the investigational stage.

Hope your sister does well with her next scans!

[ConcernedSib]

Thank you for your response & concern. Hope you are doing well. I’ve been trying to read & reread as much as I can. I have a little bit of a medical background but am challenged somewhat with the specific studies on the ongoing research to treat LC - although I’ve been quite encouraged & hopeful for my sis. We’re on opposite coasts but we talk & text. She is fiercely independent & is quite determined. Kudos to all the ppl in the fight of their life and the supporting community that surrounds them.

[Deb W]

Sib,

I was told by my oncologist that Tabrecta has an added protective benefit for the brain when compared to Tepotinib.

[ConcernedSib]

Thank you for your response & concern. Hope you are doing well. I’ve been trying to read & reread as much as I can. I have a little bit of a medical background but am challenged somewhat with the specific studies on the ongoing research to treat LC - although I’ve been quite encouraged & hopeful for my sis. We’re on opposite coasts but we talk & text. She is fiercely independent & is quite determined. Kudos to all the ppl in the fight of their life and the supporting community that surrounds them.

[Nicole]

Hi 

my dad has been on Trabecta for about 2 1/2 weeks. Has anyone notice increase in fatigue/ shortness of breath?

[Abe]

After 2 months on Trabecta my mom developed serious edema on feet and hands, very low albumin levels, extreme fatigue. We had to stop the drug. A week later she feels better, the plan in to restart Trabecta on minimal dose and increase gradually in order to find the dose she can stand. Anyone had a similar experience?

[Tom Galli]

Nicole and Abe,

Welcome here! I don't have actual experience with Trabecta therapy. My treatment occurred in the "dark ages" of lung cancer before targeted therapy was discovered. But, we have a detailed informational resource on targeted therapy here. Moreover, I'm sure forum folks with actual experience will soon chime in to lend there expertise.

Stay the course.

Tom

[ConcernedSib]

My sister has been taking Trabecta since late January. Her dx is bm nsclc. Treated with WBRT for brain metastasis with MRI showing shrinking brain lesions with no swelling. Tolerating Trabecta well. Since taking Trabecta, she changed her diet to gluten free organic diet. Really help control her nausea and makes her feel so much better. Can only eat very small meals several times per day. Occasional nausea & vertigo. No swelling at all. Has good & bad days with extreme fatigue. Wakes early with  more energy. Energy wanes later in day. Sleeps 10 to 12 hours per day. Doctors and I are encouraging her to get regular exercise. A medical social worker told me that her fatigue could be a cumulative effect of all of her treatments. Hope this information helps. My take away, if you can improve your diet and incorporate some exercise, no matter how small, it helps.

[eullrich66]

Hi,

Besides lasix, has any doctor come up with another treatment for the edema?

[Rower Michelle]

Now that is a great question.  My targeted therapy for AlK causes edema & it took months to find the right dose & frequency.  Lasix isn’t one size fits all & requires adjustments based on how much sodium is consumed the previous day.  Lasix can treat edema but for me it was a trial & error approach.  My dose was up to 40mg & we settled on 20mg four times a week. 
 

Basically my edema “test” is how well do my rings fit. If I can’t get them on or they are tight, then I take a lasix.  
 

In addition to Lasix if you can tolerate it, compression socks might help.  I try & walk at least one mile a day which seems to work the best.  Typically I walk about 2.5 miles a day which seems to move the fluids pretty well.  
 

It is a frustrating process for sure. 
Michelle

[Jesse L.]

 Quite actually my recommendation for what I know is a  combination of diet change, exercise, and perhaps Lasix if needed (most likely). Doing nothing is just begging for a bad outcome on your other bodily parts and functions.

There is good information on the Web about foods that are best to eat to minimize edema or if there is a dietician associated with where you get your care you may want to consult with that person. I also couldn't emphasize enough the importance of exercise to keep the system moving so to speak. Lots of folks have lots of reasons for not exercising, but you really should be doing that. However, above all consult with your medical team before you begin. Understand that no one will make you nor expect you to run a marathon in a few months, but the benefits of even a short leisurely walk are well worth the effort.

As for myself, I'm currently on a regimen of chemotherapy and I'll admit on my bad days I have a hard time doing much of anything at all. However, on my good days which is about two/thirds of the time I'm walking as much as four and maybe five miles a day sometimes. We're meant to move so that's what I do.

As to lasix, I'm with Rower in that those drugs are not a one size fits all. From day to day depending on your particular food intake, your size and weight, and even your activity level your need for them will change. It's tough to speculate what you will need drug wise to keep the edema at bay. I would imagine it best then to keep a kind of regular schedule if possible so as to predict how much you need. 

Oh, and you might want to try some compression socks too...they actually do work to some extent.

Other than that all I can say is I understand that it's tough to have to address all this c**p when you're just trying to win your cancer battle, but that's the way it is. And I can fully understand your pain. My cancer has led to the additional development of Deep Vein Thrombosis (DVT) and now I'm taking pills for that too. We all got to make more changes than we want to for this nasty, diabolical, and unforgiving disease. I wish it weren't so... 

[Marcia Fluhr]

I have tried to read thru all the comments and responses to the edema and the reduction in dosage of Tabrecta.   The current dosage is 150/2 in AM and 150/2 in PM.

The edema is still present.  I am taking (2) lasix.  I walk 2 miles/day with dog.  I wear the support stockings.  Is anyone wearing compression support on their arms?  The tumors are shrinking.   Has any had to have their dosage reduced more?  I keep my salt intake to a minimum.

[Dr. S]

On 4/15/2021 at 12:19 AM, Abe said:

After 2 months on Trabecta my mom developed serious edema on feet and hands, very low albumin levels, extreme fatigue. We had to stop the drug. A week later she feels better, the plan in to restart Trabecta on minimal dose and increase gradually in order to find the dose she can stand. Anyone had a similar experience?

My 89 y.o. father is having a similar issue.  400 mg/day Tabrecta seemed to be tolerated, but after two month on 800mg/day, edema has become severe. Therapeutic effect was excellent based on PET scan, but side effects have become an issue.  The plan is to take a few days off the medication and then resume Tabrecta at 400mg/day.  

 Has anyone found a simple way to increase albumin levels through diet?