Recurrence treatment decision inquiry

TogetherWeCan

Hi everyone, a family member recommended this network and I have joined in hopes to share my experience and obtain thoughts from others going through the same. I have a diagnosis of Endometrial Serous Carcinoma stage IV. I heard news that my cancer has come back after going through the first line of treatment options which included surgery, chemo (Taxol and Carboplatin) and radiation. I have been presented with second line of treatment options. One option is another chemo called Doxil and the second option is a combination of Pembrolizumab (immunotherapy) and Lenvatinib (targeted medication). I am told the combination of drugs is a newly approved treatment while Doxil has been a common standard for a while. The doctors say either option is a good one and I need to make a decision. Has anyone had this experience? I would love to hear your opinion if you've had to make this decision. Sending positivity to all.

LiveWithCancer

I have stage 4 lung cancer and I was presented with a similar option back in 2013. I had to go into a clinical trial to get immunotherapy - it was really new back then. I was not given optimistic news for Doxil (in my case) - my oncologist told me it would make me sicker than 1st line did (and first line made me pretty sick) and the results weren't as good. I went into a clinical trial for what turned out to be Opdivo (nivolumab) ... and I'm still here to tell you about it. I have heard good things about the combo treatments for various cancers and if I was in your shoes, that would be my immediate decision. If it isn't effective, then I would go with Doxil, but I would give the combo a chance first. Part of the reason is that it is likely that you will have fewer side effects from the immunotherapy-targeted therapy combo.

I had a terrible time with chemo and a relatively easy time with immunotherapy. Plus, the immunotherapy stopped the tumors immediately. They didn't go away ... and I did have growth of one tumor several years later that I ended up having radiated ... but I couldn't be happier that I chose the path I did when I was presented with a similar choice to yours.

Good luck!!! And welcome!

BuckeyeShelby

I'm not quite as far along into treatment as you, but I'm not far behind. I was diagnosed with stage IV endometrial cancer in Aug 2012. Did the Taxol and Carboplatin and was NED for almost 8 years. Had to have a mass removed this June - it was mesh from a hernia tangled up with fat. However, there were endometrial cancer cells in the tissue. I'm still recovering from that surgery (they really had to reconstruct because of the previous hernia surgery & hysterectomy, plus they had to repair an incisional hernia). My medical oncologist won't touch me until the wound is completely healed -- I'm getting there. But I'll have the choice of the ol' Taxol/Carboplatin or the same w/immunotherapy thrown in as a clinical trial. Not sure what type of immunotherapy, as we've not gotten that far yet. Not even sure how far along the clinical is yet. Good luck!

po18guy

Totally different cancer, but experience with Doxil (Pegylated Liposomal Doxorubicin), which may be effective, but has known toxicities - one of them being cardiac. Hand and foot syndrome is another. The newer "inhibitor" class drugs such as Lenvatinib as well as the monoclonal antibodies like Pembrolizumab are potentially more effective and almost certainly less toxic. I have over seven years of constant treatment with various inhibitor class drugs and have noticed zero long-term effects.

On principle, "I" would go with the newer combo, understanding that the "old standby" of Doxil may be needed as a plan B. If you have the luxury of time, a second opinion on these treatments would be very good as there may be a 3rd or even a 4th option available.

As always I recommend a second opinion and treatment at a National Cancer Institute designated comprehensive cancer center. They employ the best and brightest and have cutting edge treatment (even clinical trials) available. If you choose to, you may find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

TogetherWeCan

Thank you LiveWithCancer, BuckeyeShelby and po18guy for sharing your experiences and opinions. This is a hard decision to make when all I've heard is bad news the last couple of weeks. I have given this decision some thought and while I lean towards the combination of immunotherapy and targeted therapy it's a difficult choice when one of my oncologist leans towards Doxil and my other oncologist the combination. It has been very helpful to hear your thoughts about the combination option. I'm in search of a second opinion though it's making me nervous that the days keep moving and I haven't started treatment. I'm staying positive!

Have you had experience with supplementing treatment with alternative options such as plant based eating, herbs, meditation and such? I've been looking into this. My oncologist are not very thrilled to mix medications with herbs but I have friends that tell me I should try it either way and I've found places that heal through alternative methods. Given my diagnosis I am not comfortable going fully on an alternative medicine approach but I am curious about the option to use it in addition to my treatment. Have your oncologist been against this approach?

I am sending each of you positivity and my wish for good health.

po18guy

It sounds like expediting a second opinion would be very appropriate. As to coping, plain old fashioned faith prepared me for cancer, carried me through it and has sustained me afterward. As to diet, I ate what I could keep down. My thinking is that there is enough insanity going on in your body as it is. Introducing other radical (or even substantial) changes may only burden you or possibly overwhelm you.

LiveWithCancer

I didn't do more than just the medications given by the cancer clinic. Didn't change how I ate. I was as active as I could possibly be - got a lot of exercise - walking and playing agility with my dogs - which was actually just maintaining the activity level I had when I was diagnosed with cancer.

I knew people who supplemented treatments with drinking wheatgrass. One of them had Small Cell Lung Cancer. Between her traditional chemo treatments, wheatgrass and God, she was NED for about 10 years. Another one who drank the wheatgrass religiously celebrated 10 years of life after diagnosis before his cancer became uncontrollable.

On the other hand, I just did what the doctors prescribed, maintained a fairly good exercise routine, had a lot of faith (not so much for healing, but faith that God has this no matter how it goes). I was diagnosed in October 2012, began Opdivo treatments through clinical trial in July 2013. Quit all treatments in April 2019. My last scan showed stability in all tumors (as have the scans for the last few years). So ... did the wheatgrass actually help my friends or not? Who knows?

I personally agree wholeheartedly with po18guy. Why take the chance of negating some of the work the treatment is doing by adding more to it? It has been tested as it is, but not with other options added in. A healthy diet is always recommended (though I do not eat particularly healthy), decent exercise is always recommended, a good attitude at least helps make the experience easier to go through, controlling stress is recommended because stress can even cause cancer...

I'm so sorry that your doctors have differing opinions. If I were you, and with what little I know, I would choose the combo. If it didn't work, the doxil would be waiting in the wings.

(Sorry this is getting long, but I had one other experience that might be of interest. I had one tumor start to grow some years back. It was in a lymph node in my neck. (That is when I went off of clinical trial, but not off of Opdivo.) My doctor wanted me to wait around for a new clinical trial that was coming - for combo treatment and do doxil while I waited for the trial to open. My first oncologist had unencouraging things to say about doxil so I was not in any hurry to do it, even briefly. I chose instead to have that tumor radiated, against my medical oncologist's advice. When telling the radiation oncologist about how my medical oncologist wanted me to wait for the combo treatment trial, he (the RO) told me that he'd heard great things about combo treatments and that I could consider it rather than the radiation. He said I could have the radiation later if the treatment didn't work. I wanted the tumor gone so I went forward with radiation.)

Best of luck!!!

TogetherWeCan

Thank you for sharing your experiences. I took a little time off to think things through and I decided to go through the combination treatment. I remain faithful that this will work. I am aware of the side effects but I hope that I don't experience them. I really appreciate your feedback to me. It helped in this difficult times.