Radiation Off the Table For Now

I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

henhill said:

I am sorry to have say I am

I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

So very sorry to hear this news, henill. Praying that it works for you this time and that you never have to undergo treatments again. Wishing you strength and comfort, Kim

henhill said:

I am sorry to have say I am

I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

Good God - why is this so hard to kick? I know what you mean by welcoming the treatment - anything to get rid of the discomfort - even replacing one discomfort with another. The hair thing IS devastating, I agree. And as much as I thought I could rock the scarf, I am too old and wrinkly to pull it off. I found a great place for affordable wigs tho - QVC! I buy the "Hairdo" name brand and love how light and comfortable they are. They let you send them back if not satisfied - and I've sent back plenty. Found a style that works for me and I even did a little trim on one to change it up a little. You are going to hammer those nodes - again - and your next scan will be better. So Hang on - get a new cute wig and some dangly earrings, eat ice cream or whatever makes you happy - xoxox, Billie

BC Brady said:

I haven't been on in a few days - and now to read your crappy news just makes me MAD! My reoccurrence is also in the lymph. What your doc said about having affected nodes that aren't lighting up is exactly what happened to me - but I only had 8 weeks before it came roaring back in several nodal areas - everywhere, even in my cervical spine. So take this as good news for you - fewer lighting up after a year - so maybe it's slower growing? Why in the world do they leave these decisions up to us?!?!

Radiation has never been offered as an option for me, only chemo. For what it's worth, your onc may be hesitant about restarting carbo/taxol for the possible reaction. I did fine on front line carbo/taxol, then lasted only 3 rounds on the reoccurence before I became allergic. Come to find out, it's a "thing" that happens - you can become platinum resistant. Maybe she's saving those big guns for later? Doxil and gemzar were the easiest of all the chemos I've been on. Some weird stuff - a couple of mouth sores with the doxil and some skin irritation taken care of by Sarna cream. I had a preponderance of affected nodes in my left axillary - which as "luck" would have it, were removed when I had the lumpectomy 3 weeks ago. All pathology came back uterine metastisis - not a new primary breast cancer, and my conclusion is that I got a free operation due to a faulty biopsy that was suspicious. (normal protocol - would have not done a lumpectomy and treated with chemo only) Basically you are where I was a year ago. Now I'm on a targeted chemo called Lynparza that is suppposed to be targeting the brCA2 mutation and some others. I can't recall if you said they did any mutation study on your original tumor, but the brCA mutation didn't even show up in my original tumor - it showed up in my pre-trial testing of the axillary node genetics.

The NCI-Match trial includes nodal disease - maybe that is something that would be available to you? It's national and has 24 'arms' to the trial. 22 arms are targeted chemo - works directly on your mutation, and 2 arms are immunotherapies. They do the pre-trial stuff to determine what arm you'll be in - if any. If you don't come up with any of the mutations they are fighting, then you don't get to be in the trial. For traditional chemo - it was described to me as a "cookbook". First you do this, then this, then this and so on. Next for me is topotican if I dont have good results with this Lynparza or get rejected from the NCI MATCH trial. It seems there's always the next recipe - so don't lose hope and Carpe Diem - it sounds like you are! Hope you have a good vacation and dance up a storm!

Love, Billie 

PS: just re-read your post - I did give the metformin a try for 4 months without any success that we could see. Also was on Avastin for 3 rounds, no adverse reactions for me. It's supposed to help with bloating. My insurance initially rejected the claim as it's 15k a treatment and is primarily an ovarian cancer drug. But for us with serous adenocarcinoma, it's also used. They eventually approved it upon resubmission.

You are such a dear heart- thank you SO MUCH for continuing to share with us all your journey!!  Continued prayers for you   (((HUGS)))

Thank you ladies

Thanks to all who have offered advice and condolences.  I am so glad to have found this group where everyone knows your pain along the via dolorosa.  I am also grateful for all the tidbits of advice and experience that offers whatever lift there is.  The doctors have no time for it and I live in a rural area where there are no UPSC patients out this way to commiserate with and learn from.  Please know that as I learn who the different folks are, I keep your struggles in my heart as well.