How are people with liver mets doing?
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Sorry I haven't posted here in a while. I follow most days but it seems that I'm here late at night and too tired to post.
Navelbine is mostly treating me well. SEs aren't too bad, fatigue and low blood counts being the worst of it. I was also having leg cramps (and sometimes other muscles, too) and constipation (not for nothing is this drug sometimes called "Navelbind"). A friend recommended a suppement for the cramps which is high in magnesium and not only did it take away almost all the leg cramps but it also took caree of the constipation. So it makes me happy.
When I had my bloodwork Thurs before my tx they also took samples for markers. I could call Sunday for the results of that but I might wait until next Thurs - that way I can at least pretend it's good news for now. Such is the rich fantasy life of a Stage IV lady.
Leah
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Leah, i am glad you posted, we were wondering about you. I am happy Nevalbine is treating you kindly and you will get good results next week. Here it has been busy, some new comers, some good news, some not so good. Like you said it is the life of stage 4 ladies. I hope you will sonn gives good results.
I on the other side had my PET. On the 11th , and the results were good , no evidence of activity of the disease. So i thank God for being so kind to me. I will soon start tamoxifen along with hercptin/perjeta and see how it works. Kisses and good wish and rayers frim to you. Keep us posted. Hugs
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Hello All - Not much to report, just reading the updates here. RonnieKay, I never heard of a salt/chlorine pool but I would love to try it! And JFL, I got a lot of comfort in reading that livers only need 10% to function. Every time I mull that over, it makes me feel better
Penny, prayers and peace to you tomorrow when you find out how your bilirubin is doing. And Syrmom, I commented to you on the 'Halavan' site, but I don't remember commenting that you got The Talk. As I said, you and I are very close in diagnosis, tx, etc. And my Onc is so positive about how many other tx are down the road and different avenues we can try, that I am just shocked. Let me add that my Onc and I are painfully open with each other, and there isn't lots and lots of tx left, but enough that this journey isn't going to be over for awhile for me. I'm mad at your Onc! Lol, but seriously, I'm not G-d and I have no idea when anyones' time is up, but Syr, I just really feel that you and I have a ways to go. I hope I didn't overstep my boundaries, just had to get that out. 0 -
Ok, my fine friends. Tomorrow is a big day for me. I'm asking you, yet again, to storm the Gates of Heaven for me. Please pray, pray, pray, for ONLY great news! Mama needs chemo! Thanks all. Your love and prayers will not be forgotten.
Penny0 -
Penny, my prayers are going out for you. And, since I live in the Holy Land, it's a local call.
Leah
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Benjnate,
I totally agree with what you said to Syrmom. No one really knows when his /her time is up. As long as there are treatments available regardless of the number an onc has no right to tell his patient to lose hope. I am mad at him too. I hope you both have a long time to go .
By the way salt water pools are actually very nice it is very fashionable in my country since they make the pools along the beaches so they use the sea water and filter it to the pool. Tbis way the water is always clean plus you get the benefit of floating like in the ocean lollll. It is quiet enjoyable. I hope you get to try one.
Love and prayers to you all.
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I had the opportunity to swim in a salt water pool and it was wonderful. The water feels silky smooth and you don't get "chlorine eyes" or a headache.
Just sayin'
Penny0 -
Penny continiung to pray for you.
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Bilirubin is so high that onc is surprised I'm functioning. Trying lowered dose of Ixempra. I have anywhere from 2 weeks to 2 months to live.
- Penn
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Praying praying praying for you Penny
~e
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praying for you Penny.
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Still praying for a miracle for you Penny
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Adding my prayers, Penny.
Leah
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Praying,praying. praying.
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No...please God...save our sister, our light...Penny...we love you so.
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Penny, I pray for a inner peace and serenity for you (and your family) as you carry through your remaining days on this earth, no matter how long that may be.
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You are in my thoughts and prayers, Penny.
Maureen
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Penny
Praying and thinking of you. God has his arms around you and so do your friends on the boards.
Diana
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Penny,
My heart is heavy with hearing your news and yet His still small voice whispers...
I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.I pray for Him to continue to be with you and your loved ones as your battle continues. Love to you, Penny!
Debbie
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Love you all. There are not enough words.
Penny0 -
Right back at you!
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Love & prayers to you & yours...from me & mine, dear friend.
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I am also dealing with bone and liver mets - liver so far 1.4 CM - taking Xeloda 3000 mg. a day - fatigue side effects severe but otherwise doable. My heart goes out to Penny - one wishes we could reach out through cyberspace and give great big hugs.
I have what might seem like a simple question - does anyone know if "lymphatic' massage is O.K. to do? I have read conflicting info - but someone recently told me it could help spread the cancer through lymph and blood??? I am scheduled for one on Friday and now not sure I want to follow through. Susie
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apackoftwo...Why are you having a lymphatic massage done? They are aware of your medical history, right? Sorry I have no advice...seems to me it's the same fluid, just being helped along the path...but I'd consult with maybe an oncology pt.
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Ronnie Kay - I actually read about lymphatic massage on the American Cancer Website which said it was O.K. - then yesterday my chiropractor told me he had a patient who had lymphatic work done and her cancer went viral - so I think I will go for the massage but just get a regular one. One of the side effects of Xeloda for me is muscle aches to the point of being painful and my onc says I can't take Advil, aspirin - only tylenol which does NOTHING to alleviate soreness and pain. I am reluctant to start on the heavy duty pain meds until I absolutely have to.
Another question, which maybe I should post on the Xeloda thread, but..........wonder if anyone else experienced an initial response of tumor markers going down and then beginning to rise again - not a lot, but definitely up - so they increased the dose from 2000 mg. a day to 3000 and last test they were stable - not up but not down. I am due for a scan at the end of this month.
You girls are all so involved in your treatment and so knowledgeable - I am in awe - I was at first but recently I feel oddly detached from everything - like sleepwalking through taking meds 2 x day, going to appointments with onc, doing blood work and then just sort of saying "ho hum" when getting bad news. Have started Lexapro and hope it works to kick my booty out of this flat place I seem to have landed in. I am usually the go to person - the research queen and now I am just tuckered out by all of this. I suppose we all go through periods like this - I find reading all of your posts so helpful - if nothing else, I don't feel so alone. So thank you, Susie
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Apackoftwo,
I would ask before doing a lymphatic message, because last year i travelled to Portugal and tried to get one at a reputed spa. They refused, when i filled a form stating if i had any disease and cancer was mentionned. They told me it would help spread the cancer.
However, i do get messages but relaxing or therapeutic ones. It helps with muscles pain.
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Apackoftwo I don't know much about Lymphatic Massage, but I would not take the chance. On a related topic, I was told by my oncologist and by several chriopradtors, that chiropractic treatments can also help spread bone mets. Before I had bone mets I had fallen on the ice and went for Chiropractic treatment. The Chiropractor wanted my onc to sign off that it was ok to be treated. So I would advise against that also.
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Haven't read Ella's post yet...but am glad others w/experience answered your question, Susie. I'm thinking I'm glad I've never had a massage or been to a chiropractor :-). Funny thing...when I saw onc in April, I told him my right lower rib was still sore months after irritating it. He said they don't heal quickly...have patience. I said the dr said a chiropractor could fix it in one visit. He looked at his fellow & they both shook their heads and said no...don't go there. Maybe that's why.
Another concern is taking Tylenol. With liver mets, I'm surprised your onc hasn't told you not to use it. It was the first thing my onc said...only to use Ibuprophen, and only as necessary. I realize you have pain, and I hope there is something that will alleviate that...but no Tylenol, ever (do I sound like a mom, or bossy big sister????). And....thank goodness for our friends who do more research, read more & share more...I think we all have moments where it's all too much...I'd be lost without you all!
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I was told by a professional who treats lymphedema that lymphatic massages can spread cancer. Just sayin'.
- Penny
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