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Hi Everyone

I've been on Avastin for over 3 years.  My urine protein was under 1.0 then it became 1.0 steadily.  Finally, a few weeks ago, it was 3.0 and Avastin was not given.  This past Monday, again, it's 3.0 and no Avastin given.  I taste a lot of salt in my mouth.  I've cut back on salt, protein and saturated fats. I'm drinking tons of water.  I'm seeing a kidney doc in Dec. What else can I do now? Did this happen to anyone here?  My fear is the cancer will grow while the Avastin is withheld.  Any experiences with this issue? I'm only on Avastin and Taxol every other week because platinum drugs did nothing for me.  It will be 4 years in Feb 2026.  How are all of you doing?

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Hi @BellaDonna1959. I'm sorry to hear about the rise in the urine protein readings. I'll be honest. I googled it because they take so many different tests from our blood that I had to remind myself about this one. I'm glad they've got you in to see a kidney doctor so quickly (although I'm sure it feels like a lifetime away right now). Did your doctor suggest any actions in the interim? Do you continue with your Taxol treatments in the absence of Avastin?

I'd like to personally believe, without any medical evidence to support this, that with Avastin in your system for so long, and being given every other week, that the cancer will remain at bay. I've always believed these drugs linger in our system for awhile following their use. Particularly if the use has been long. However that is a NON medical opinion but one I like to hold onto.

Please keep us posted on how you progress. I'm hoping the kidney doctor will have some good advise/counsel and you will be back on track with your treatments. Sending positive vibes your way. 🩵

#Supportandencouragement #Treatmentandsideeffects

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Thank you - that is a very positive message.  I agree with you and hope I have enough in my system to keep things at bay.  I am still getting Taxol, but when I had Cabo and Taxol my tumors grew (front line treatment) so I don't have much faith in Taxol alone.  I will let you know what happens next.  I get a scan today so next week I will see what's what when the results come in.  Thanks again!

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@BellaDonna1959 🤞

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@BellaDonna1959. Hope the scan shows reduction in tumors.  Hope the kidney function improves and your protein numbers decrease so you can have continued treatment.  Keep going strong!

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I'm on the same treatment bi weekly Avastin + weekly Taxol,  although I'm only 3 months in. I'm really sorry you're dealing with the protein issue. I know it's common for doctors to hold it temporarily until things settle. It's good you're seeing a kidney specialist soon so they can figure out if anything can help bring the levels down so you can continue safely. I hope things improve quickly for you. Sending strength 🩵

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@BellaDonna 1959 I had my urine test again and it is holding. 1g protein on Ramipril 5mg despite another dose of Avastin. It works.

Great news and I will ask for it too. Thanks.

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@BellaDonna 1959 first of all congratulation of getting Avastin for 3years. I am on it for one year and I had to advocate for it strongly. I just had the same problem - protein in urine of >3g after weeks of 1g protein in urine. Avastin was held and I panicked. I was prescribed Ramipril 2.5 and then 5mg. It is an ACE inhibitor and thus a blood pressure medication but also number 1 choice to treat proteinuria. It helped within 2 weeks- last time protein was <2g protein and I was allowed to get Avastin. The Nephrology specialist that I saw was pretty calm about it. He said that he sees this frequently and patients can go back on Avastin once protein drops under 2. The proteinuria is reversible once Avastin is stopped. In my case Ramipril worked and blood pressure also came down to more normal levels.
I will get tested Monday again and hope it stayed down.

So helpful and I am going to ask about this drug. Let me know your next test result. Good luck.

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@Tanja ... this is why I love this forum so much. The knowledge and sharing. ❤️🩵

#Supportandencouragement

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This is so helpful thanks. I will ask about this specifically.

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Hi @BellaDonna1959 I'm checking in to see how things are going. I know you said you had a scan done and were going to do the follow-up on results. I know the brain can play tricks on us while we are waiting for appointments etc. so I just wanted to let you know you are in our thoughts. I'm not sure when the kidney Dr. appointment is in December however it sounds like some Teal Sisters had some good information to share regarding the urine protein and use of Ramipril. Stay tough Teal Warrior!!

#Treatmentandsideeffects #Supportandencouragement

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I am trying the Rampril 2.5 mg to start. B P not normal yet bouncing all over. I am monitoring it and it was super high in treatment yesterday but urine protein was 1.0 so I got Avastin. Kidney doc next week. Scan showed stable disease what a relief. Thanks for aski

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@BellaDonna1959 very good news on the stable CT. One positive move forward.

Glad you were able to get the Rampril and it's helping with the urine protein. Good luck with the kidney doc. Hope that goes well too.🤞

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@BellaDonna_1959 Great that you got Ramipril, and stayed on Avastin. I take it in the evening, aiming for the same time every day. Maybe you also need a higher dose.