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My name is Marcia.  I have been taking Tabrecta since January.  I experienced the adverse reaction which was cited as a side effect - edema.  I went off the Tabrecta for a week.

I just started back on Tabrecta at a reduced dosage and I experienced the edema again.  I would like to hear how other people handled this situation.

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Hi, Marcia, and welcome.

Sorry to hear about the edema. I have no targetable mutations, so no experience with Tabrecta. What does your oncologist tell you? Another source of help may be the palliative care team where you're being treated--they often have strategies to help minimize side effects from treatment.

Unfortunately, our search function on the forums isn't working right now, but here's at least one thread about Tabrecta and side effects: https://forums.lungevity.org/topic/47585-trabecta-side-effects/ You might try posting there and maybe you'll get more responses from members dealing with this.

 

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Hi Marcia,

I take a different inhibitor that also has the edema side effect.  I actually developed pulmonary edema and it felt like there was a gold fish swimming around in my chest, my shoes didn’t fit, and I couldn’t get my wedding rings on. 
 

My doctor prescribed a low dose of Lasix with Potassium.  In addition I sometimes wear compression socks.  Most importantly is body movement.  Walking is about the best way to manage edema.  Start slowly and work yourself up to a manageable distance.   
 

Shoes can still be a challenge for me so I invested in four pairs of Crocs & one pair of Addias slides.  
 

It took a few months to find the right Lasix dosage & frequency.  Your medical team can provide a lot of guidance on how to manage this pesky side effect.  Let us know how you do. 
 

Michelle

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  • 2 weeks later...

Thank you for your responses.  Doctor has suggested I be seen by a therapist who deals with edema.  The home health  care nurse has made a request for one.  I wear compression stockings.  I imagine the next step is to be measured for compression sleeves for my arms.... real attractive with summer coming....  I'll be wearing long sleeves.

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Hi Marcia,

I've been wearing compression stockings (thigh high) for about 10 years, not for edema from meds, thoough. I have lymphedema in both legs as a result of treatment for a gynecologic cancer.  I also had a possible episode of lymphedema in one arm (also had treatment for breast cancer). This was while I was flying, so I now wear an arm sleeve and gauntlet when I fly. So I'm pretty familiar with compression garments. 

Here are some suggestions and information. If you need to buy many of these, you can get them cheaper on-line. But it's a good idea to get properly fitted first. I have done well with name brands-- some les-expensive house-brands/off brands haven't worked well for me.  If you're wearing knee highs and a fairly light degree of compression, there are some cute prints and patterns.  Arm sleeves come in some great-looking patterns and colors. An interesting pair might be an alternative to (and cooler than) long sleeves. We have in Portland a specialty lingerie shop that carries and can fit a lot of these things--much nicer than being fitted at a medical supply place.

I've found gloves indispensable in putting stockings on. I found some gardening gloves with latex palms/fingers that come in size small that work perfectly.  

Wearing this stuff can be a hassle, but for me, it works.

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My wife has been on Tabrecta since last June when it was just coming out. It had shrunk her tumor more than 1/2 after the 1st scan and another1/4 after her 2nd scan. She see her oncologist tomorrow and I'm sure another scan will be ordered and we'll see what's going on. My wife has had edema of the feet, legs and hand which the Dr. prescribed Lasix but only once in awhile, not to be taken every day only as needed. I hope it works for you as well as my wife.

 

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I was taking Tabrecta for 9-10 days.  No edema, but  on day 11 I had a serious allergic reaction to the drug and ended up in the hospital so I can no longer take it.  I did have what my oncologist called an "immediate response" with Tabrecta.  I had a CT scan  and the tumor shrunk and there was no sign of cancer in the two lymph nodes.  My oncologist is working on a new treatment plan that might include Tepotinib (similar properties as Tabrecta though)  he is also including an allergist for a consult - I will see him in a week.    I am not having treatment presently as he's figuring out a plan - checking with EMD Serrono about Tepotinib.  There  also might be an option to go back on Keytruda - however, in the past that I was taken off that due to toxicity which caused colitis.  

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On 5/10/2021 at 12:05 PM, Marcia Fluhr said:

Thank you for your responses.  Doctor has suggested I be seen by a therapist who deals with edema.  The home health  care nurse has made a request for one.  I wear compression stockings.  I imagine the next step is to be measured for compression sleeves for my arms.... real attractive with summer coming....  I'll be wearing long sleeves.

I have been taking Lasix.   A request was put in for me to be seen by a lymphedema therapist.

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I am still waiting for a phone call  from the lymphedema therapist.  What does this therapist do to reduce the level of edema?   Does this person massage the areas of involvement to release the fluid?  Will this person be able to write an order for compression sleeves?  My primary had to write a prescription for the compression stockings for my legs.

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Here's what my lymphedema therapists did. Yours may or may not do similar treatment. Not sure if all edema treament is the same.

I had massage to allow the lymph fluid to drain, and was taught to do the massage myself at home. Surprisingly, thear treament doesn't start in the affected areas. First they/you massage the areas in the upper trunk where the lymph system empties into a big vein, then progress down the body, following the lymph system and  focusing on areas where there are concentrationens of lymph nodes, and then, in my case, down the legs to the feet last. The idea is to make space for the lymph from the legs to drain into.  

Some people get a specialized kind of bandaging  before they go to the compression garments. I didn't have it, but I did get a custom-made set (many pieces) of leggings that I wore at night. They were made of something like neoprene and looked like a cross between a wetsuit and a mummy wrap. 

The  therapists didn't write the prescriptions themselves, but wrote recommendations for the doctor to sign off on. Fortunately, the Durable Medical Coverage of my insurance paid for this stuff, because some of it, especially the mummy wraps, was shockingly expensive.

Let me know if I can answer any other questions. I'll be interested to hear what kind of treatment you get from the therapists.

 

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On 4/28/2021 at 2:13 PM, Marcia Fluhr said:

My name is Marcia.  I have been taking Tabrecta since January.  I experienced the adverse reaction which was cited as a side effect - edema.  I went off the Tabrecta for a week.

I just started back on Tabrecta at a reduced dosage and I experienced the edema again.  I would like to hear how other people handled this situation.

Yesterday, a lymphedema therapist visited me.  She did no manipulation of the fluid.  She did not suggest any techniques for my husband to help me.  She asked if I wanted compression for my arms or for my legs.  She cut pieces of compression like-material to be used around my thighs before I put on the compression stockings.  If there are members out there who have had a different experience with a lymphedema therapist, I welcome the input.  I will go back to my doctor with this information.  Thank you!

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