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Need some advice - encouragement

cindy0519
Posts: 173
Joined: Nov 2015

I have been doing Avastin as a single agent maintenance drug since I was taken off the Carbo/Taxotere/Avastin combination when it tried to take me out in early July (nearly zero blood counts and neutropenic infections every infusion). At this time, we discussed doing Avastin until I either had a recurrence or side effects that warranted taking me off Avastin (most likely a rise a blood pressure or protein in urine. This Friday is cycle 9 of Avastin only. A CT in Oct (2017) was NED so Avastin seems to be working. At my prechemo appointment last Friday, my onco said she wants to scan again in March (after my 12th cycle) and if the result is still NED she wants to talk about taking me off Avastin. I do have some side effects, lower back/hip pain that renders me virtually immobile at times, and mouth sores that also come and go as they please, none of these are standard Avastin side effects. I am also beginning to have some bloody noses though it is very little and I believe primarily caused by a cold I have had and can't seem to rid myself of. The Onco's nursing staff has been less than nice about my use of Magic mouthwash (they don't feel I should have mouth sores and don't seem to care that I actually do) and why I haven't returned to work (though until last Friday nobody, including the Onco herself, had discussed this topic with me at all!) I am scared stiff of the whole "do nothing approach" as it relates to my USPC. First line chemo ended for me in April 2016 and my recurrence was first seen on scans in Oct 2016 though the lumph node was tiny at that point, it was officially diagnosed and surgically removed in April 2017 when it had almost tripled in size! I have read scary things about going off Avastin after long periods of treatment with it and the cancer returning quickly and aggressively! I will say these are older studies and reports...but what isn't related to USPC? My Onco says there is nothing that says that only 12 treatments is any better, or worse for that matter, than staying on it until recurrence or side effects become too much. Hell...there is nothing that said that Avastin would work for me in the first place for that matter ( It is shown to increase time between progression but no overall survival rates). Just not sure how to process this in any way and everything in me screams and becomes hyper anxious about the thought of "doing nothing" again. Anyone have any experience with this?

evolo58
Posts: 293
Joined: Dec 2017

I'm going to sound like an echo here, but it really sounds like you need a second opinion in another facility. If THAT doctor agrees with the first one, it might give you better peace of mind. It is so, so hard to believe many sites and studies, because many don't use adequate samples, use old data (even the survival statstics on this site use much older data. I was surprised at that! This data is more than 15 years old, and it isn't easy finding newer data, since ten and even fifteen year data are often taken into account, so you'd indeed be at 2002/2003 and out, when procedures for the Type IIs were dramatically different. Great!) Oh ... and many downright contradict each other. The Type IIs are particularly at the bad end of this. There aren't as many of us, and we aren't the golden children of research, so good studies aren't easy to find.

I have this awful feeling that whichever facility I choose for my surgery, both are major teaching and testing facilities that publish reams of studies and research documents, and both are looking at me with keen interest for research because I'm such an outlier specimen, as are several ladies here. 

I mean, that's PROBABLY not the case, but just because I'm paranoid ... :)

Anyway, I'd go with the second opinion. If you don't feel confident, that will not help your outcome.

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Nicm
Posts: 31
Joined: Nov 2017

I agree with evolo58, but also think there ARE things you can do. You can watch your diet, drink green tea, go low on carbs and sugar. Starve your cancer with your diet. Take turmeric pills. You can do as little or as much as your are comfortable with/makes sense to you in terms of alternative medicine. I am from the ovarian cancer board and my knowledge compared to others (in terms of other things you can do) on here is completely limited. But there are things you can do! Just because you are off of avastin (or anything else for that matter) doesn't mean you're not doing anything!

cindy0519
Posts: 173
Joined: Nov 2015

Probably should have pointed out that UPSC is my second cancer.  I was running 40 plus miles a week, eating clean, and the healthiest I had been in years when I was diagnosed with breast cancer and then USPC a mere four months later in the fall of 2015. I have tried numerous forms of alternative medicine and continue to try new altenatives that minimize the poision I am subjecting my body too. I firmly believe that some mix of alternative medicine and modern medicine is the best way to go. The challenge is...finding the right balance for my cancers. When I say “do nothing approach” I am referring to my Onco reference to chemo - nothing more.   

I sought a second, and even a third opinion, before proceeding with frontline treatment and up until now have been very comfortable with my Oncos recommendations. I’m not even sure I question her now as much I wonder if I am just letting anxiety about the unknown take over. I posted here hoping someone else has been in this spot and could share their experience with getting through it.  

pinky104
Posts: 574
Joined: Feb 2013

You probably haven't had any genomic testing done yet, have you?  I had 6 mutations when mine was done, and the four drugs that had been used successfully in some of my mutations had been used for other types of cancer besides UPSC.  My oncologist told me that the drugs were expensive and since they hadn't been approved for UPSC, he was sure that no insurance would be willng to pay for them. But then I was contacted by another member of this board, who reads medical journals.  She told me that she had found that a diabetes drug, Metformin, was known to work on four of my mutations.  She was taking it herself.  I have started on it (in spite of not being diabetic), and it's too soon to know results yet, but I'm hoping that between that and the Turmeric/Curcumin I'm taking now, I won't get this cancer back at all or I'll have a longer remission.  I've had UPSC twice, in 2010 and 2017, and I was originally stage IVb at diagnosis.  My GYN/onc. acted like he thought I'd get it back again in five years or so after my chemo ended in Sept., so I'm hoping these drugs will help.  The PA at my family doctor's office had read some of the studies and had put other patients on Metformin prior to prescribing it to me.  He said he was willing to prescribe it to his "more informed" patients.  It requires a little extra bloodwork to check for kidney problems and low blood sugar levels, but if it works, it'll be worth it.  I started out on half a 500 mg. pill for a month and then upped it to two half pills a day, morning and evening, after the first month.  It should be taken on a full stomach to avoid nausea.  The person who recommended it to me and some other people on this website say it doesn't work on everyone, but it may work for you if you have certain mutations. 

Let's face it, if you're like most of us, you'll probably worry about a recurrence the rest of your life, so maybe taking something like this might lessen your anxiety a little. 

I'm currently in remission for the second time.  In 2010, I had Carboplatin and Taxol.  In 2017, I had Carboplatin and Gemzar (with low blood counts) then switched to Cisplatin and Gemzar for the last treatment after having an allergic reaction to Carboplatin.  My GYN/onc. was surprised I went into remission so quickly.

SF73
Posts: 264
Joined: Oct 2017

Was any hormone treatment recommended for your breast cancer? I don't know if hormone treatment is an option for UPSC but if hormone receptor of your tumor is positive then wouldnt that mean you have two hormone related cancer? 

Like Pinky I am also on Metformin even though my H1abc is 4.8% (lowest possible value, so definitely not a diabetic). Metformin has some angiogenesis properties. If you feel Avastin has worked for you, replacing Avastin (an angiogenesis drug) with Metformin may make sense. Though please note what this article  suggests: "Since metformin's use in cancer as a single antiangiogenic agent appears to be a therapeutic disappointment, the use of the drug as part of combination anticancer modality represents a therapeutic challenge"   

I am also on Megestrol Acetate (Megace) Progesterone treatment. I am currently on chemo (Carbo/Taxol). My oncologist thought I could benefit from Avastin but my insurance company denied coverage so I never got it.  My histology is endometrioid and hence different than yours but I thought I would share my treatment plan with the hopes that it would give you some ideas. Best of luck! 

cindy0519
Posts: 173
Joined: Nov 2015

I am on Femera (estrogen blocker) for the breast cancer and cancer as in Tamoxifen prior to th discovery of the USPC.  However my USPC is not positive for either Estrogen or Progestrone. I have discuseed Metformin with all of my treatment team, on several occasions, and it has been reviewed by the entire Oncology group and not determined to be something my medical team believes will provide value. I have also had this discussion with my PCP and my internal medicine doctor.

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Jacjac2
Posts: 44
Joined: Feb 2016

I have been on Femera but was told not to take it with Avastin.  Femera helped for a while but tumor in abdomen area begain to grow more.  It shrinks, it grows, not matter what they use on me.  I did the Doxil, 3 treatments, and had a bad reaction.  Now we are trying Avastin single agent, starting that today.  I have had a second opinion with MDA and now with a third doctor but same local Cancer Center.  Thinking of going back to MDA.  It leaves you thinking when they tell you there is not much study done on Uterine cancer and not many more treatments that play nice.  Doxil was not nice, hoping Avastin with do better even if he has told it is only temporary. 

SF73
Posts: 264
Joined: Oct 2017

I found at least one research from 2015 that studies the effect of Avastin together with Femara. Dont think there is any adverse drug-drug interaction.

The women were randomly assigned to get either:

  • Femara alone (2.5 mg per day)
  • Femara plus Avastin (15 mg/kg every 3 weeks)

Femara is a pill, usually taken once per day. Avastin is given intravenously, which means it is dripped into your body through a needle inserted into a vein.

After slightly more than 3 years of follow-up, the researchers found that women who got Femara plus Avastin had better progression-free survival than women who got only Femara:

  • progression-free survival was 20 months for women who got Femara plus Avastin
  • progression-free survival was 16 months for women who got Femara alone

This difference was statistically significant, which means that it was likely due to the difference in treatment rather than just because of chance.

 

 

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