Update to liver Mets and other issues from scan

[Wolverine19]

I saw my doctor today. This is another one of those times when I like to tell people I wouldn't wish breast cancer on anyone but it's very interesting with all of its twists and turns. So I was supposed to go on one clinical trial but that will not start for probably a couple of months. My options were either to start xeloda or go on this other optional clinical trial. It involves taxol and one of the requirements is you can't ever have had chemo which I qualify for. It was interesting because my genomics test indicated that afinitor was my other option but my oncologist does not think that will help me. So I'm going to try this clinical trial which will probably be starting within a couple of weeks. I just took my last ibrance last night so there is a two-week washout. One arm will be taxol only, the second arm is taxol plus a reovirus or something like that. It is an immunotherapy trial which has had some success for patients with her2-positive type. But I am her 2 negative and er positive. The way I understand it er-positive cancer cells are cold and the idea is to make them hot so they will inject a virus and I think that turns them hot so immunotherapy will respond to it. Something like that don't quote me. I'm waiting for more information to try to understand this better. The third arm would involve a third drug on top of the other two. I don't know if this all makes sense but it's all very interesting to me. I'm also a bit nervous because I think this virus will be a bit like the flu is what I'm told. I told my friends I will take pictures because I think I will go bald on this and I will show them how beautiful I can look without hair, with makeup of course. LOL. I I figure as long as I have my sense of humor I'm still okay. I also have to have a thoracentesis to drain the water from my pleural effusion which I'm told is not that big a deal. My doctor is hoping the mass on my abdomen will respond to the treatment. It has nothing to do with my liver Mets it's closer to the skin and involves the upper abdomen.

[Hidden]

Thanks for providing an update. I would be excited at the prospect of starting a clinical trial. I hope you can get started on it soon and start to see immediate results.

Take care,

Sophie

[Wolverine19]

This is a phase II trial. I learned today that Phase 1 at least for this trial they only used three people. In the second phase they will use probably about a hundred people I was very surprised to hear that they only use a few people for the first phase. I understand it but that's a little scary. It seems if you're doing a clinical trial the third phase is the best one to be in so they can see results on a wider variety of people before you go through it.

[Wolverine19]

Thanks Sandra, I'm so glad you told me that first phase is a low number. That was a surprise to me as well but I don't know much about clinical trials so I guess I just assumed that that was normal. Do you know what is typical for a first phase? When they send me the consent form I will know more about it. You have definitely given me something to think about. I might not go that route after all. We will see.

[Wolverine19]

Hi Sandra I just read the information on the link. Yes you are correct 3 is a very low number. If I had known that I would have asked her why it was so low when I was at the appointment. This gives me pause for thought because I'm not convinced of the safety of this clinical trial. I may still do it but I definitely need to go and ask some more questions. Thanks again for the heads up which is very helpful.

[Wolverine19]

She gave me the option of xeloda and she also talked about afinitor. I was surprised that she more or less nixed afinitor oh, she just said she did not think it was going to help me. I read somewhere that they found it does not improve progression-free survival but that was some years ago I think that the study was done. I figured I would try the clinical trial because it expands my options. But I got to thinking after my appointment I could also do taxol by itself after I tried afinitor and/or xeloda. My doctor and I talked about so much this appointment, we covered a lot and I can't quite remember what was said. She may have told me why there were only three people, I can't remember. But yes I will ask. Your advice is very helpful. I also like to challenge my doctor in a good way. This is a teaching hospital and she teaches so she is approachable with questions. We get along well because I approached her in an amicable way about it. Anyway I have not yet committed, I will take a look at the agreement and do a more thorough risk assessment. She left it open for questions so I will talk to her again before I sign the consent. I like to write out the advantages and disadvantages of each before I make a decision. Thanks again for your help Sandra.

[SeattleMom in reply to Wolverine19]

I can imagine how difficult it becomes to remember so many details from your oncology appointments. I wonder if it would be helpful to record the conversation on your iPhone when you are at future appointments? I sure would! I can't imagine a doctor having any qualms about your need to remember details. God bless you!

Linda

[Pbsoup]

Whether or not you do the trial this is interesting. It sounds like they are looking at immunotherapy for non triple negative gals. If it works it could be a major step forward, no?

Can I ask what hospital this is?

[Wolverine19 in reply to Pbsoup]

Yes, you described it better than I could. The way I understand it, it is indeed a trial 2 use immunotherapy to treat patients who are er-positive. I am happy to tell you which hospital but I think it's better if I wait until I get this consent form. They were just finalizing the details after my appointment. I should have something within the next week or so.

[Sebina]

I don't know much about trials! Just thinking since you say only 3 people participated, whether there is a possibility that the same trail was done in several hospitals and that they collected data?

Good luck!

Sebina

[Wolverine19 in reply to Sebina]

It seems like my oncologist breezed over that. It was a long appointment so I didn't really have time to dig too deep. I will look over the consent form to understand this better. I don't think other hospitals did this before but I can't say for sure. I will definitely ask my oncologist that question. Frankly I'm feeling a little bit insecure right now because this is a new territory for me as well. I would love to hear from other people who have done clinical trials. I will probably start a new post when I get more information about this.

[Barbteeth in reply to Wolverine19]

I was offered to participate in a trial or go on everolimus and exemastane

I just don’t like the thought of trials in case they aren’t successful for me and let’s face it we’re on limite d time

As it transpired the trial was stopped due to Covid and the everolimus and exemastane failed!!!

Barb xx

[Lisa-n-AZ in reply to Barbteeth]

Barb, Hello. I am just starting Everolimus and Exemastane...sorry to hear it failed. How long until it failed and what have you moved onto?

Thanks so much Lisa

[Geulah]

Much good luck,and good news. Try and see seems to be the name of the game. Can you share the name of the trial?

I was on one a fewonthe ago,it worked partly so my doctor didn't hesitate to stop and change treatment. He felt good to try because this could be the new breakthrough.

Ibrance was a clinical trial not that long ago.....

Now helpful standard treatment

I thinl it's a good idea to read about possible side effects

With blessings from Above may you and everyone have healing and well being

Positive thinking goes a long way...keep the good work

[flowersinherhair]

Be sure you understand the clinical trial before you agree to it. It sounds like a blind study which means you will not know which "arm" you are going into until it starts. if thus is the case then you may or may not get trial drug which is probably the immunotherapy. They should give you papers to read and plenty of info to make your decision.

[mariootsi]

I wish you well with your decision. I don't know much about clinical trials, but the brave women who take part are heroes.

Maybe write a list of all your concerns and get clarification before proceeding.

[hdhonda]

Wolverine, it sounds like you and your doctor have a plan. I don't totally understand it, but I sure hope you get favorable results. Wishing you the best. Blessings Hannah

[Hidden]

Wolverine19 -

I'm sorry you're going through this and I agree that it's very interesting -- and promising.

It seems that the Taxol is a good option to begin with, and then possibly adding the reovirus and maybe even a third drug, too, can do only additional good (side-effects aside...)?

There was some discussion here recently with other women who were starting Taxol after the oral treatments stopped working...It's stressful, and no fun, but as I always say, these are the heavy artillery, which is good..

And I'm especially glad you still have your sense of humor!

I wish you the best of luck with it...Please do keep us posted.

p.s. Do you know the name of the trial? I'm trying to set up a teledoc meeting w/ my secondary onc in a couple of weeks and would love to bring this up...

Thanks, Wolverine...Be well...💜

Lynn

[Wolverine19 in reply to Hidden]

Thanks Lynn I'm trying to digest all this and make a proper informed decision. I'm supposed to get the consent form next week so when I get more information about this I will be putting another update on this site for everyone.

[diamags]

Dear Wolverine, You have a very good attitude towards all of this. Whatever you decide, do what's best for you with all the information you can gather. If you do the trial, I would like to say thank you in advance because if it wasn't for them, we wouldn't have any of the effective drugs we have today.

[SeattleMom]

Hello!

You are indeed a wolverine! I have to applaud your state of mind and your battle readiness! I sure hope I have your mindset when my current protocol stops working. You are an inspiration and I wish you all the love and blessings this message can convey!

Linda

XXOO

[RLN-overcomer]

I will continue to pray that this trial will be nothing , but miraculous for you, and your loved ones.

[Bestbird]

You've received some great responses: before going on a clinical trial, you should know what you are signing up for!

Below from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available in a complimentary .pdf, is a very long list (apologies!) of questions patients are encouraged to ask before enlisting.

For this type of information, along with treatments and cutting edge research, please feel free to visit: insidersguidembc.com/about

Wishing you a good outcome, whatever you decide!

The Phase of the trial

If this is a Phase 2 or Phase 3 trial, what was the effectiveness of the experimental therapy in the prior study, and what type and degree of toxicities were experienced by patients?

What are the inclusion and exclusion criteria for the trial?

Whether there is a possibility of receiving a placebo (sugar pill) instead of the experimental drug. If a group of patients may receive a placebo, what drug(s) will they receive to treat their disease?

Whether there is a required washout (“run-in”) period prior to entering the trial whereby the patient must stay off all medication that would normally treat their disease.

If a washout period is required, how long is it? Often it lasts for 28 days, which may pose a risk in terms of disease progression and mortality.

How will the therapy be administered (pill, IV, other?)

What risks and side effects may be experienced on the experimental drug?

How often will the patient need to visit the hospital or clinic?

Will the patient need to stay in the hospital? If yes, how often and for how long, and who will cover inpatient hospital costs?

What costs may the patient incur on - and traveling to - the trial, and which of these costs will be covered (and by whom)?

What is the nature and frequency of tests given to patients on the trial?

Who will cover the costs of these tests?

If the patient becomes ill due to the experimental drug, will the patient’s related expenses be reimbursed? If yes, by whom?

Who will oversee the patient’s medical care while they are on the trial?

Who may the patient speak with about questions they may have during and after the trial, and how can they be contacted?

Who can help answer any specific questions from the patient’s insurance company?

How and when will it be determined whether the treatment is working?

Is the timing of the trial appropriate for the patient’s situation? (For example, a newly diagnosed patient may prefer to receive standard of care treatment instead of immediately entering a clinical trial, especially if the standard of care is generally considered effective for their subtype of MBC).

Why is this particular clinical trial being recommended? This is a critical question, and if a satisfactory answer is not provided, the patient may want to reconsider whether they wish to enter the trial.

Similar to the above, how do the possible risks and benefits of this trial compare to those of the standard treatment?

What are the credentials and research experience of the physician and study staff?

How long is the trial expected to last?

If the patient decides to drop out of the trial, may they do so at any time without repercussion?

If one group of patients in the trial fares considerably better than another group, can the patient switch to the group with the better outcome? If yes, at what point would this be possible?

Will the patient be informed about what treatment they are receiving on the trial? Is yes, at what point will it be disclosed?

If the patient has a good response to the experimental therapy, may they continue to take it after the trial has stopped?

Will the patient receive notification of the outcome of the trial? If yes, when is it expected to be provided?

[Wolverine19 in reply to Bestbird]

Thank you best bird this is wonderful information. Most of these questions I already have an answer to but there are a few that I still need to find out so I really appreciate you forwarding this.

[Bestbird in reply to Wolverine19]

You are welcome!!!

[viennagirl]

Thinking about your journey and with you well. Keep us posted. Hugs Marlene