Doxil (newer type) and Avastin (Recap of Lost Posts, Topic Created by evolo58 on Nov 15, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

evolo58

Nov 15, 2018 - 2:37 pm

Anyone on these? I don't mean the older Doxil, which wreaks havoc on your system.

I like my new doctor so much better. She told me that with a such a short progression, things could be more difficult, and Carbo/Plat is off the table for now. Yes, it could be that cancer was lurking there all along with that stranding, but she could not go by that. We have to assume I'm plat-resistant. She explained things in a factual, non-sugar-coated, yet non-alarmist or dire way. We will try this new treatment and see if it works.

My old doctor was not QUITE as incompetent as I thought ... buuuuuuuuuut ... I still have my doubts. I still wonder if a couple of extra chemos could have gotten rid of the stranding. I remember what happened to CheeseQueen. I admit to never being completely satisfied about that, as CheeseQueen doesn't seem to be, and her remission period was longer than mine!

The gyno-onco did mention that I might have to switch between treatments. That is normal. We need to find out which one works the best and longest.

The bit about "Avastin until nasty side effects/stop working" scared me. But she explained what that meant is that we will have to explore other options ... not necessarily dire ones. Perhaps Megace will work. Perhaps there will be a Phase III or IV clinical trial. Perhaps the FDA will greenlight another option. It does not automatically mean (slices hand across throat).

She agreed that she HAS seen women in far worse shape pass five years and beyond. It's not common, but it does happen. But she has no crystal ball, and UPSC is a nasty disesae. We will have to take things as they come and see what happens. We have to focus on NOW.

That is all she can promise me ... that she will do what she can to ensure as much of a quality and quantity of life as possible. I am so glad I fired my old doctor. 

Biopsies, radiation, etc .... right now, she explained how they are not the best options, but has ruled nothing out in the future. Fair enough.

Anyway, looking for people on these two treatments and how they reacted to them. Please pray and hope these two work!

 

zsazsa1

Nov 15, 2018 - 3:13 pm

If they can get a sample, and

If they can get a sample, and send it out for genetic testing, that may help guide treatment.  I am so glad that you found someone with whom you can connect, who looks like they can help you!

 

evolo58

Nov 15, 2018 - 4:41 pm

Testing

I've had genetic testing, Foundation One and ER/PR/Her2 testing (sorry ... forgot the name for that). My new doctor was quite happy to get the results, and yes, these tests offer some more options, such as Votrient, Megace, Letrozole, Tamoxifen, etc. That is good news. We ladies need every option we can get! However, she explained to me that Votrient and Megace et al. are not commonly used for endometrial cancer patients at the moment. That would be an option for the future. She also suggested that since UPSC and ovarian cancer are closely related, I might want to look at treatment options with ovarian cancer stage 4. Those could also be available for endometrial cancer paitents in the future. 

I did not have tumor assay testing. Right now, I have two tiny lesions, a very small indeterminate lesion (the liver one) and three small lymph nodes of concern. According to the doctor, they would not be the most feasible to test at this point. Hopefully, they will always be so and better yet, DISAPPEAR already! And I thought cockroaches and poison ivy were bad! I don't think I will ever complain about THOSE again.

 

evolo58

Nov 18, 2018 - 10:31 pm

Ct scan for me

First of all, just because a tech finds something on a CT scan does NOT mean it's cancer. CT scans have trouble finding which lesions and lymph node swellings are due to cancer, infections, inflammations, dead cancer cells, adhesions (which can form months after a hysterectomy), etc. 

"Lesions" and "nodules" are catch-all terms for tumors, cysts, ulcers, abcesses, etc. etc. And some radiologists are a whole lot more over-cautious (to a fault) than others. I can tell you THAT, for darn sure. I've had certain lesions called all sorts of things. The same lesions!

My CA-125 shot up like a bottle rocket, too. A benign cause or two or three could still be behind this, and CA-125s are prone to all sorts of errors, but no doctor is going to proclaim, "Hey! You're fine". I don't blame him or her! Going from 17 to 770 is not good, no matter how positive a spin I try to put on it.

That being written, the CT scan and CA-125 need to be considered in line with a patient's clinical history, along the radiologist's perceptions for the CT scan. I had mets to the periotneum and omentum in first-line, so new development there puts up a red flag. Prior to this, I had stranding in the lower right pelvis that my gyno-onco chose to do a wait and watch on. Well, perhaps she should have watched a bit better. Much of new area of concern seems to be in that area. Coincidence? I'd like to THINK it's diverticulitis in a perfect world. My bowels/instestines were wretched around that time; mainly due to stress. I'm absolutely, positively not betting on this.  Neither is my new doctor. The world is not perfect.

I also have a lymph node swelling on my para-aortic lymph node. That is a favorite place for progressions to happen, and my gyno-onco did not take out ANY lymph nodes for sampling. You bet that worries me. I won't go into other areas, but while there is still a chance that some or all of these could be benign, and we wouldn't really know unless we did a PET scan or biopsy, we can't leave anything to chance. The liver lesion could be a new hemangiona, which have popped up over the last six months, could be related to fatty liver, which I defintiely have, or could be something of concern. That is a true watch and wait because at this point, it's indeterminate, which is CT-scan-ese for "We don't know WHAT this is at this point. No ... really."

I know of one woman who had six such areas of concern in a CT scan. Five were benign. One was not. Great news? No. That is one too many.

We are plagued with scans and tests that are prone to error and misinterpretation. PET scans are a little more accurate, but even then, there is a little room for error. This is the frustrating nature of endometrial and ovarian cancer. 

 

ConnieSW

Nov 15, 2018 - 5:58 pm

I like

your new doc. 

 

barnyardgal

Nov 15, 2018 - 6:36 pm

I like her too!! I think

I like her too!! I think there were some ladies on this board before who used the newer doxil. The side effects don't seem so bad. I was allergic to Taxol and ended up with the old doxil (adriamyacin). It wasn't fun but the newer doxil is supposedly much easier. The newer kind isn't for front line treatment but is used for recurrences. 

 

NoTimeForCancer

Nov 15, 2018 - 7:59 pm

evolo, you crack me up with

evolo, you crack me up with some of your posts!  I always believe that you have to love your doctor, and I think you made the case.  

 

SF73

Nov 15, 2018 - 8:09 pm

Glag you like your doctor,

Glag you like your doctor, evolo. The treatment plan made sense to me. Best of luck!

 

derMaus

Nov 15, 2018 - 11:03 pm

I like this one much better.

I like this one much better. I'm glad you were able to make the change and found someone who appears to offer a wider range of options. Good news!

 

Armywife

Nov 17, 2018 - 11:52 am

Cheers for the new doc!

Isn't it amazing how calming it is just to sit down with someone who listens and explains??  Happy for you to have this woman on your team.  Praying now.