How are people with liver mets doing?
Comments
-
My wife has now switched from xeloda to ibrance. The onc thinks she will have less side effects with ibrance / letrozole than xeloda, and prefers she switch before xeloda fails on her.
She has both diffuse liver mets and multiple discrete small tumors in her liver. The xeloda has worked well in shutting them down, but she is really getting worn down by the hand foot syndrome from xeloda, and suffers from something like neuropathy in her legs from it. It gives her insomnia.
0 -
Thinking of you on those scans babs and Linda. Hope those TM's take a nosedive. Thanks Shetland for the rundown on those Tx, I learn a LOT from you.
0 -
Husband11 - encouraging to see that more and more Cdns have access to Ibrance. I wish your wife success on this new combo and a good BREAK from SEs! Better QOL can do wonders.
Thank you Artist!
0 -
Hi Linda! Yes absolutely pm me anytime. I noticed too looking at your treatment hx that it looked like my sister's!
She's had a bit of a tough go on the first days of Taxol (vomiting). Found prochloperazine ineffective. Remembered she had Ondansetron from radiation two years ago, contacted the onc and is now good! (She visited Avignon last month (on a side trip from Lourdes) so we find the "on danse"etron amusing!)
Husband11: I hope your wife has good luck on palbociclib. My sis was doing well on it but they had to keep lowering her dose due to blood count crashing so eventually the dose was just too low to work. I don't know why Neulasta--which she'd had before on chemo -- wasn't an option on palbociclib. Maybe you can find out in advance in case.
Gill
0 -
Irishtwin. I also prefer "ondanse"etron!, commonly called Zofran. Although I sometimes alternate with prochloperazine (in suppository form). I've learned to take it at the very first wave of nausea or else it's too hard to control.
0 -
Had my scans yesterday. Now waiting !!!!
Wanted to share great news. My Dd who got married 4/2 is expecting a baby boy the end of December. So happy!!!!! I better get this bc under control!!!!!
Babs
0 -
The background is kind of blown out, but that's the Pacific Ocean behind us. I've ALWAYS wanted to stay here! Our balcony overlooks the first tee at The Inn at Spanish Bay, Carmel, CA. We are celebrating our 27th Anniversary.
Back mets are cooperating, but hip mets are cranky. Hope my stable liver mets don't mind a glass of wine or two.
Cheers!
0 -
Lita. Enjoy. Looks wonderful and happy Anniversary. !!
Bab
0 -
Slightly better shot...
0 -
Congratulations Babs on the grandson. I think being a grandparent is the very BEST job in the world. You will love it.
Amy
0 -
Babs - congratulations. Keep your eye on the prize ... seeing that grandkid get married!
>Z<
0 -
Hi up to now I had breast mets to my spine but now I have a liver mass. It is 7cm by 5cm. What are the treatment options and how long have some of you been in treatment? Looking for hope
0 -
Two years for me ago and doing OK. Still working and feeling fine. Lots of treatments out there and it looks like you only have one liver mass. Perhaps localized treatments could be an option as well such as Y90?
0 -
Thank you so much for responding, it gives me hope that this new tumor doesn't mean the end of the line
0 -
dear ShetlandPony, I couln't agree more with you.
Next week we'll be deciding on new treatment with MO. How I wish I could go back to Xeloda and and stay on that forever
0 -
Z. You're funny. My goal now is to be around for this grandchild to know me. Based upon being 68 this summer seeing him get married is doubtful !!!! I have 2 granddaughters that I love dearly but see infrequently due to a DIL that's just nasty.
Bab
0 -
aaoaao Yes, y90 might be an option for you. I just had mine recently so I don't have a scan yet to prove its effectiveness. All of the details of all three procedures are on the localized treatment thread. It might be TMI but it is recorded and I survived.
In my case my MO brought it up to me after my 3 month PET showed growing tumor in my liver. I'm still surprised that I was a candidate because I have multiple mets in lung, chest and liver. You need to investigate interventional radiologist who specializes in this procedure. Mine is supposedly the best in Texas. I sure hope so, but he's the one who told me that. Ha YES he has a big ego.
0 -
Babs - you must be lying about your age lol! Congrats on this beautiful event in your life!
aaoaao - I can't give you much feedback. I was recently dx'd with liver mets and started weekly Taxol mid May.
0 -
Babs: Love these photos! What an amazing place. That is awesome!
Congrats on your grandchild!
Gill
0 -
LindaE and IrishTwin, I needed the "big guns" when first diagnosed metastatic with extensive liver mets. My onc said that Taxol was the best thing for me, and that we would scan after three cycles. Taxol was very effective and very quick for me, and not very difficult. I slowed down a little, especially on days 3 and 4, but was able to keep teaching weekly dance classes, socialize, etc. I hope Taxol is good to you also.
Aaoaao, almost three years for me and I'm still doing well.
0 -
I posted this on the Taxol thread and decided I'd take a chance on this one as some of you are or have been on Taxol or other chemos.
Looking for some advice please. I've been pretty miserable with severe mouth thrush and sores lately. I know Taxol is one the causes, plus I had rads to neck and head area and have been taking pred/Dex lately, such a nice melting pot for mouth issues! The awful taste in the mouth from thrush combined with loss/change of taste buds with Taxol and nausea is making eating a real ordeal. I lost 5 pounds over the last month - although I'm pleased to lose some weight - this is not the way to go. I'm rinsing/swallowing magic mouthwash 4 times a day and seeing some improvement in thrush/sores and taking Zofran for nausea. Just looking at food makes me nauseous. Any tips for me? Anybody else coping with this?
0 -
Linda. Sorry I can't be if help.
Just got back my PET scan results and as expected due to high TMs more progression. Increased activity larger and some additional spots in liver and thoracic cavity. Moving onto Halaven. I'd like to have one treatment work for a decent amount of time!!!! I need to be well for my grandson that's coming in December!!!!!
Bab
0 -
Babs - thanks for the update. The good news is you caught it and you are moving on to something that will work. Gemzar was probably doing nothing. You have likely held the cancer back with good lifestyle choices, which you must double down on. Unfortunately, we throw darts at the board to identify treatments. It's just the process ... imagine how well things will go when you find something that works.
0 -
Oh, Babs, I'm so sorry to hear this. But at least you were prepared because you knew the tumor markers were going up. I agree with Z, Gemzar was probably a waste of time.
Here's hoping we can all hang on until the immunotherapy tx's finally come down the pike and kick cancer's butt.
0 -
Lita & Z. Gemzar was s complete waste of time!!!!
Onward and upward!!!!
Bab
0 -
Babs, sorry for the progression but there must be something out there to stop it. Keep on going, you are an inspiration to me.!
Happy Anniversary Lita. I've been in Newfoundland and had no service so I'm catching up on the busy threads. I had a terrible puke bug on my way home 🤢 I'm not sure if it's the zeloda but I'm still not feeling so great. Went to my MO today and they did blood work. My calcium is low, protein is low and my potassium is low. Has anyone had this happen. My husband thinks I need a diet change to build this up but I'm not sure how to do it. Good news my alk phos which has been up to 409 has dropped to 200 on Xeloda so something is working I hope.
I hope everyone is coping and carrying on with this disease. If I've missed anyone I'm thinking of all of you and your struggles we all have.
Hugs to all
Anita
0 -
LindaE, that all sounds so difficult. I wish I had some great advice, but all I can say is communicate a lot with your doctor and nurses to find the best solutions. I would think they would give you an anti-fungal medication for the thrush? If the dexamethasone predisposes you to thrush, would they be willing to switch you to abraxane in order to drop the dexa? Here is a link to a recent discussion about addressing nausea. Some posters listed the many drugs that can help, and emphasized the importance of preventing it by pre-medicating.
https://community.breastcancer.org/forum/6/topics/...
Babs, I wish you could catch a break. Please forgive me if I have already mentioned this, but can they re-test Her2 with a very sensitive test, and/or do some tumor genetic analysis e.g. Foundation One testing to find a treatment or trial match?
0 -
Babs - you need a break girl. May Halaven give it to you.
ShetlandPony - Interesting suggestion about Abraxane, learning every day here, I didn't know it doesn't require Dex in the pre-meds. The magic mouthwash contains an anti-fungal med. Thanks for link as well.
0 -
Lita you always make me smile, and I had a good laugh. Exactly, they actually told us, D better get going and decide in this trial, being phase I still, they are overlooking her many different mets, they might be more strict as they progress. Healthy sick is a true example of the reality you face everyday.
Maria, prayers are always good. Thank you all. Yep, she was extremely young, 25yrs old, and she also was nursing her 12 week old baby, she went to the first Mamo with her Medela pump bag.from there straight to the surgeon (he stayed late to see her), I'll never forget those eyes when he saw her with the bag, he's like hmmm yeah, you better stop nursing, you are having a lumpectomy in 2 days.Never mind her Gyno told her she is too young for her lump to be a/t. He would not give her a prescription, Mamos are too dangerous with all the radiation and stuff. OH my gosh I could still remember my anger, of course I took her to my private radiologist, she does not take Insurance anyway, and she gave her a Mamo and a needle biopsy that same day. So I could so understand you. Shocking is not the right word. No fam hx. She is 32 now!
Openmind and Leftfootforward thanks so much for such good explanation of the details of this trial.
Emilylouise that's a very interesting mixture of treatment you had, was that a trial? And this new combo you are on, DD was on it separately. Navelbine is supposed to be very good, and so is Xeloda. Unfortunately, these good stuff does not stick to her.
Shetland how are you coming along now?
Alissa so happy for the wonderful news.
LindaE so sorry this thing is giving you trouble. Scans are not a bad idea. You know someone should finally start a thread about the mouth sores and thrush – it's just such a terrible issue and so painful. Would be nice to hear what ideas everyone have. So sorry you are going through this misery.
Babs this is really a wonderful time in your life, just the expecting part is fun already. When are you starting the new treatment?
Z waving at you.and thaks for sharing your knowledge.
And thinking of you all.
There was much running around to find answers where to move on to next, Dani started the trial last week, this week will be the 2nd infusion. Last week was insane, one full day going to docs that the clinical trial thinks is important, scans then she had a liver biopsy, then started treatment, then going back for days for Blood work. We can only hope now.
0 -
Shetland I had Impact assay tests at Mskcc. It's their version of foundation one and I have only one mutation that they found. Currently there is only one trial for this mutation but 2 of the 3 drugs in it failed me so my MO felt it best for me not to go into that trial. The progression was significant and she really wants to try to knock it back and i agree
I start the Halaven Wednesday night. Fingers crossed this works!!!!!
Babs
0
