How are people with liver mets doing?
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Thank you chichi, Debbie - wishing you success with your reduced dosage & vascular spasm med. I understand how scary it is, especially when something is working so well. Had that experience on taxol. Wishing you many more runs of Navelbine.
Steelrose, thanks to you as well.
I get what I need on these boards - there's nothing like it anywhere.
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Syrmom,
I am sorry to hear about your TMs but try to stay positive sometimes on a new med they go up before coming down again. I hope this is the case with you. I know that waiting is very nerve wrecking but try to amuse yourself to take your mind of thinking about it . I hope it is only a false alarm and the scanresults come out better than expected. ((Hugs))
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Chichi, lolllll you are special ! Didin't you know that? I hope the break and the dose reduction and the medication for the spasm will help put you back on track . Meanwhile , enjoy the break , it is notbad not to have to get chemo for a while . Xoxoxoxoxox
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Thanks, Woody.
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SyrMom, when i was on Perjeta, after second treatment my TM was spiked really high, my doctor was very happy, he explained that its a very good sign and indication that chemo works. Hope it helps.
Try not to worry, you cant change anything by worrying, its like praying for trouble. I know its hard and I wish we could get it easier...
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Keeping you in prayer, SyrMom. Keep us posted.
Hope you get those spasms under control, ChiChi.
:-) Penny
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Chichi - a few days ago, you commented how your mid-chest area felt 'icy-hot'. Did that end up being from the vascular spasms? I'm glad you are getting a break. I got a break for the first time since June since my counts were too low a few weeks ago and I think it really gave me time to get my head on straight again and also gain a little strength. I've felt a little more pulled together since going back on the lovely Adriamycin.
SyrMom - I wish I could be wherever you are and give you a big comforting hug. I'm a type A too so I know how our minds start racing and we just want to fix it right now. The one and pretty much only thing that settles me down more than anything else is going outside and being in nature. Literally driving the car somewhere to a state park or woods or especially someplace near water really centers me. I'll be keeping you in my thoughts.
Laura
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wishing you the best SyrMom.
Love to you all.
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Thanks to all of you ladies, you are truly compassionate & supportive & we're for each other.
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Thanks for all the well wishes.
Woody - It has turned out to be nerve damage that gives me the icy/hot sensation in my chest. And yes I am "special" - I get to come on here and read all the posts from you lovely ladies and partners in crime!
Hope the week is going well, Syrmom...thinking of you. And wishing all of you a blessed week!!
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Hi everyone. Just an update.
I had my liver biopsy on Friday 27th. It went well. Saw my onc yesterday but results not back so could not sign consent firm for drug trial. Go back on Friday. The tests start and I should get the drug within 28days.
I asked for more info on progression and I now have 4 lesions vary in size from 24mm to 10mm. There were only 2 in September.
The trial I am doing is to determine if a certain growth factor shields the cancer making it unreceptive. The drug should break this down making anti hormonal drugs work.
My thoughts are with you ladies having a hard time.
I send my prayers to you all.
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Prayers, mutherflush. Keep us posted. :-) Penny
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I second Penny Mutherfush our prayers are with you and keep us posted
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A lot of posts since I logged in last week!
SyrMom, I am sorry about the rise in TMs. I hope the scan next week is favorable. It could be the markers are indicating a positive response to the chemo. and they will fall again later. I will keep you in my thoughts.
Chichi, I have never heard of coronary artery spasms before. Did you get them while you were having chemo or did it come on after the IV? Fingers crossed the reduced dose and slower delivery will get rid of the problem.
mutherflush, I hope you get the results you want to get on the trial. Is it a phase II or a phase III trial?
I am not having the MRI on my leg until Friday. The radiologist had to work up a special protocol for the MRI and by the time that was done the first slot they had was available was then. It takes an hour and half, longer than the whole body MRIs I have had in the past. This whole business with my leg has really got me down. The first time I have lost my positivity since I was diagnosed with mets. It doesn't help that I am still not sure about so many things to do with this operation. I am also worried about how this is going to affect my chemo. I am hoping to speak to my onc. tomorrow about it.
End of moan.
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SyrMom, Chichimaine is right. Sometimes your tumor markers do go up as tumor cells are dying. I will pray your scans are good...hang in there. You hang in there as well, Chichimaine and try to enjoy your time off chemo.
Prayers.
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Thanks, Cbrogdon...I am hanging in there and trying to rest up and enjoy chemo free time.
Prayers to you mutherflush on the new trial...hoping they prove this new treatment does make the cancer unresponsive. They are doing so many wonderful things now to learn how to destroy this disease. Prayers for you going up.
Springwatch...I am one of a small number of people who seem to be pre-wired for the artery spasms. My cardiac doc calls it PrinzMetals angina. I first was introduced to this scary even after staring Xeloda - 3 days in icu/heart cath, etc.. So, I was taken off Xeloda and have been on Navelbine since October 2014 and doing great with it - se's not bad and it has shrunk the tumors to 1/4 their size now. Then suddenly, about four hours after my last Navelbine infusion, the angina reared it's ugly head again. Just really scary!!! I am praying that it was just some weird combination of things and events that triggered it and that it does not happen again when I start back on March 23rd. If it continues to happen, I will have to find another treatment/chemo. I will be thinking of you and am saying prayers that the MRI goes well on Friday and the surgery goes even better.
Hugs n love to all!
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Chichi, Thank you for explaining about your coronary artery spasms. I have never heard of Prinzmetal angina before. My mother was a frequent visitor to her cardiologist and over the years I thought I had heard everything there was to hear about angina. I looked it up and it is incredibly rare, 4 cases in every 100,000. You are very special! I hope you have success with the reduced dose on the 23 March and don't have to go looking for another chemo, especially as you already had to come off Xeloda for the same reason.
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Springwatch, good luck on your surgery, my prayers are with you .
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Thanks Woody. I don't have a date for surgery. Not until the surgeon has seen the MRI. I still don't know which of the two ops they will settle on doing. I am trying to get as much information as I can replacing the rod v. proximal femoral replacement. I have found out that the latter is sometimes done to remove sarcoma in the femur but I haven't found a discussion group where people have talked about their experiences of this surgery.
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Thank you all so much for your support and prayers. I'm feeling very vulnerable right now as I have had two chemos fail in succession.
Springwatch it is a phase II trial. I'm just so scared that while the tests are going on the dreaded is growing.
Will keep u posted.
Keep positive all you ladies. Who knows we could be on the edge of a breakthrough.
Big hugs to u all
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mutherflush, I think you will be monitored quite closely while on the trial. If the cancer is growing you will know fairly quickly. Let's hope that your results from the trial are all very good.
I had a call earlier from the scanner unit to book my whole body mri for two weeks on Monday, after my 6th round of gem/carbo. With the leg issues, I completely forgot this was due soon. I think the surgery on my leg will have to be postponed until after this as they don't like doing the mri within 6 wks of surgery. My onc will definitely want the mri so we can decide on what to do next. More gem/carbo, just gem, a new treatment schedule or a new chemo. It all hangs on that MRI.
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Springwatch I hope the MRI gives a clear look to your doctor so he can decide the best way to treat you. Keep is posted.
Mutherflush, i hope the trial would be beneficial for you and i oray God it is the right one. Prayers .
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Had my MRI earlier. Waiting to hear back from the surgeon, probably early next week. Wouldn't it be nice if he took a look at the MRI and decided I didn't need this operation?
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springwatch - wishing you clarity on what course to take; hopefully the MRI will help with that.
mutherflush - my understanding is they keep close tabs on you during a trial, so that's a good thing. I understand the fear, I also just blew through 2 chemos and may be a third depending on scan results nextd week.
To everyone else, thank you so much for your continued well wishes & support.
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My Family...Left to Right ...Rylin Jay...Daddy....Brody James...(My daughter) Mommy...and Me of course...It was my grandson's first b-day...Glad I felt good to attend...Thank God....
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Beautiful family, freebird. It's amazing how, events that others take for granted, we see them as "milestones". I was so grateful to God that I was well enough to go prom dress shopping with my daughter (and that I had enough dough to buy it!). I also was here to see my oldest great-niece get engaged. I have four siblings, one sister-in-law (husband's sister), 14 nieces & nephews, and 15 great-nieces-and-nephews. Oh, yeah, and 3 children of my own.
This is my daughter, Alison, in the dress she picked out:
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Freebird,
Lovely familly i am glad you were well enough to share special moments with teh. Gd bless you and your .m
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Penny,
You daughter is beautiful and she looks lovely and stunning in that dress. And wowww you have a big family , God bless them all and keep you well and healthy to share every moment with them.
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I had my first Navelbine infusion last Weds, along with my every-8-weeks Zometa. Now this is weird. Usually the Zometa makes me VERY sleepy. This time I felt normal energy, went to visit friends afterwards, normal life stuff. The next day I was at my DD's house to celebrate our holiday of Purim. In the middle of our meal FOOP! I all of a sudden couldn't sit any more, went to rest on the couch and fell asleep for over 2 hours (with all the kids running around and making plenty of noise). I was still tired when I finally woke up but after I got home - not tired. The next 2 days the tiredness descended suddenly the same way and left the same way. I guess it will be interesting to see how I react to Navelbine alone.
Leah
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