How are people with liver mets doing?
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Jaytee - sorry to have to welcome you here. Please keep us posted on you. Prayers for you and yours...
Ronniekay - do you mean that you won't be receiving any treatment until November? I understand you love your oncologist but something has to be done if that's the case. Praying you get it resolved quickly, unless you want the month off :-). That might be nice.
:-) Penny
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long time RonnieKay, but i am glad you are still doing well and hope you continue for a longtime. I am sorry though your doctor is still away, it is so hard to change when you trust a specific person. I hope your scans stay stable RonnieKay and my prayers are always with all of us. I don't know yet if xeloda is working or not this is my first week on it , but the SEs till now are almost nill except for the sleeping and a bit of tiredness. I like you will never be able to stop treatment if i get stable on this one, it will hit back hard like it did on aromasin
my tumors doubled in numbers and size and multiple spread to the spine. End of november i will have a scan to see how xeloda is working. Still waiting for my FISH results as i got a +3 for HER2 in another prominent lab i should get the results by friday . If positive my MO will change my treatment from Xeloda to taxotere perjeta and herceptin together. I am keeping my fingers crossed. Enjoy your time with your grandbaby .((HUGS)). 0 -
Jaytee, sorry you have to be here, but you are welcome, as you will see all the ladies here are wonderful and extremely supportive. Our prayers are with you , please keep us posted.
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Perjeta Boosts Overall Survival in HER2-Positive Metastatic Breast Cancer
September 30, 2014
Final results from the CLEOPATRA study showed that women diagnosed with HER2-positive metastatic breast cancer who got Perjeta, Herceptin, and Taxotere lived about 1.5 years longer than women who got only Herceptin and Taxotere. Readmore...The Mods
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Judy - welcome to a place of loving support. I'm sorry you have to be here, but this is a group of wonderful people who will be here for you.
Leah and Wilsie - I also found out (today) that I have developed 2 lesions on my liver after 6 rounds of Abraxane. Bones and lungs are stable, but liver mets are new. Crap!!!@! I am shocked, disappointed, and scared.
After 6 years with mets, I suppose it was just a matter of time and I am somewhat heartened to read about those of you who have been living with liver mets for years now. I'll have a good long cry tonight and then get on with living.
My onc wants me to start AC tomorrow. Another thing I'm scared about. So far I've done ok on all the drugs I've taken, including Abraxane, so I hope this one is tolerable.
Wishing all of you, us, good days, many more years, and lots of smiles along the way. Thank you all for being here and reaching out.
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Hi, Jill49. Welcome. Hope to hear good news from you soon. Prayers...
:-) Penny
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Jill49,
Sorry about the liver mets, but you survived 6 years , i am sure you will survive those. You are welcome here as you can see these ladies are wonderful, supportive and have a great sense of humor. I hope you do well on AC, they are most likely to help. Keep us posted and i hope we hear good news very soon.
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I've not been gone for a few days. Unfortunately, I am one of the few that cannot tolerate Xeloda. I just spent three days in ICU after apparent heart attacks. My new cardiologist and oncologist concur that what I had were cardiac artery spasms brought on by the Xeloda. Needless to say, it was an extremely scary time for me and for my husband...ambulance trip to ER, heart catherization, etc. I am home now and feeling much better. No more Xeloda for me. I did see my onc today and we will start Navelbine on Monday. Prayers please that this will be as effective as Xeloda is purported to be. We sure could use a break right about now! lol
I'm still optimistic and have certainly not given up the fight...I may have been knocked down in this round of the fight, but it an't over til it's over and I've got alot of fight left in me! Will keep posting as to how the Navelbine works. Thanks all!
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Chichimaine - I'm so sorry you've had such a rotten time. Glad you're feeling better and am sending every best wish that the next treatment brings you great results.
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Oh, Chichimaine, how very frightening that was! I'm glad you're feeling better now. I've heard Navelbine is a good chemo.
You night want to stock up on laxatives and/or stool softeners since I've also heard it referred to by ladies who have used it as "Navelbind".
Leah
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Had chemo today - thank You Jesus! My schedule has been changed
slightly to accommodate my weakling white blood cells. Also, every
2 weeks (starting today), my husband gets to give me a
"Neulasta" shot which will boost my WBC. It has to be given in a
fatty spot. HA!:-) Penny
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Redworlf- you probably want to look into taking The regular Claritan with that Newlasta shot. Newlasta caused me a lot of bone pain (an understatement) and claritan for whatever reason helps with that.
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I was told I could give myself the Neulasta shots. Yeah, like that's gonna happen.. A friend who is a nurse gave them to me.
They come prefilled, and the insert gives a chart with places on the
body where it can be given. I think it was arm, thigh, or stomach, I got them in my arm since it was before my second mx.I didn't have the pain a lot of people do, but I have heard, as leftfootforward said, that Claritin helps (I think it's day before, day of, and day after but you can ask on the chemo forum to be sure).
Leah
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Chichimaine,
Ohhh ! I am so sorry what a fright! I am glad it passed and that you are feeling better and restong at home. I am new also on xeloda and two days ago i had a pain on the chest bone but it went away, now i am worried , i will finish the forst cycle on tuesday. Navelbine, is very effective on liver mets, it is given sometimes with xeloda, so hopefully it will compensate your allergy on xeloda. But like the ladies said it causes constipation and low white blood cells. Neulesta will help the blood, it does cause bone pain for a day or two , you may want to ask for neupogen because the shots are take over a period of 5 days not one shot like neulesta and it causes no pain. My husband gave me the shots in the upper arm or upper leg you alternate. I wish you good response on navelbine. Keep us posted:))
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lollll Penny fatty spots are the best for neulesta , it is better than hitting a wrong spot , this will be painful .
Prayers heading your way and for all of us
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Thanks all for the responses and encouragement...Leah S...I will start stocking up on the laxatives...loved the "Navelbind"! lol Thanks, Jill49 for the encouragement...mine to all who are here, too! Woodylb, thanks for the info on Navelbine. I will keep you all posted. This board is a life saver for me not only physically, but mentally and emotionally. My love to all!!
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Oh, Chichimaine......so sorry to hear about your ordeal in the er! Glad you are home now. I definitely know what you mean about needing a break! Hope the new treatment will do the job without too many se' s.
Jill....did you start the A/C? Did they have you take emend before the treatment? It really helps prevent nausea from that chemo. It's a tough one but hang in there...you can do it! Do you have to get a neulasta shot the day after....I know I needed it to keep the cell counts up. I agree with everyone else on here about taking the claritin, it does help with the bone pain. Penny.....whoever is giving you the shot...have them roll it between their hands a bit before giving it to you, it's kind of a stingy one and seems worse if it's cold. I really hated shots as a kid....never would have believed I'd become a human pin cushion! Another thing about the neulasta shot.....if you have any blood pressure issues...take it easy after getting the shot. I take a bp med and have sometimes had an episode of lightheadedness and feeling like I was going to faint. They give me the shot 24 hours after my treatment...so usually I will go get the shot, then go home and put my feet up. Last week, I had to get my heart echo and since I was over near my onc' s office...they said I could come and get the shot earlier than I was scheduled. After that I went back to work for a couple more hours...Well after an hour on my feet...I got dizzy and felt like I was going to faint...had to find a place to lay down for awhile. I recovered after a bit and was able to drive home....but I won't do that again.
Take care everyone....thinking of you all today!
judy
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Jaytee's suggestion about warming the shot is good. I was told to take it out of the fridge 1/2 hour before the shot, so it's for the same reason. A cold shot is not a happy shot.
Leah
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I just got my CT scan back when I went for chemo on Tuesday and there are no new spots, some have not changed and others have shrunk. Most of the shrinkage is in the liver. My liver numbers are now in normal range. My hemoglobin was again low (76) so I had to get another transfusion on Wednesday. So we will carry on with the regieme of two weeks on and one week off. I was hoping getting the blood transfusion would slow down by now.
Hated wigs the first time round - made my head to itchy. I just stuck with hats or nothing at all. This time I'm seeing how long I can get away without having to shave my head. I have really thick hair.
As for the bone mets he said they are hard to track as even once they heal there is still something that will come up on CT scan.
That is a big improvement because at the start of this I thought they were writing me off. The cancer came on so quick.
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Hi Roberta37,
I am glad you are responding to treatment and hope you continue to do so. I never wore wigs except for my son's graduation, i hated the feel so most of the time i wore nothing , when out i wore scarves or nice berets. My PET showed new activity on the spine , they suddenly showed , my MO said they were probably there but were not active. I hope yours go back to inactive. What chemo are you getting?
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Thank The Lord, Roberta37! Great news - keep it coming!
:-) Penny
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There are so many joining this liver thread...and I look forward to being w
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hit submit after 1 sentence...so, here goes!
There are so many of us on this liver thread...and my hope is that we're all here, sharing info for many years to come!!! Jill...I was saddened to see you had liver spots pop up. I remember my first go around, a few gals were on AC and it was a toughie...but at that time, it was our first rodeo so everything was scarey & we didn't know what to expect. The "funny" thing is, they all had lymph nodes involved, I didn't. Now, I'm stage 4 & they're "survivors" (i never know if I fit that category...I'm alive, does that count...don't particularly care for the term...3 journeys later.). Anyhoo...hope it knocks those spots silly!!!
I'm on my phone-gotta get used to the tablet, and can't scroll so...will just say my prayers are for all...and I just marvel at what we can bounce back from. Chichi...sorry you have such awful heart problems on xeloda. My friend had an ablation after herceptin proved damaging. Hope you recover quickly & are stronger soon. Penny...another onc wrote my orders so I've not missed txt...but, you are so right!!!! My onc may not return so the wellness coordinator-smart 3-timer-at my center met w/me yesterday and we discussed new options. I am at peace, and relieved that I will be seen by someone she considers equally smart & very patient oriented.
Woody...are you hoping to be able to change to h/p/tax? I read the mod info and am happy people will have that option...but many of us had tax & herceptin as a first line years ago. My onc said she wouldn't do tax a second time. I hope whichever you're in...it's a success!!! Please explain all the different labs doing testing on your her2 status. I don't understand the confusion & think the time they're spending deciding should be time you're treated with the right txt. Just caring
Judy...how was your echo???? I'm a wee bit concerned waiting for mine. I've been short of breath the past week. My previous tests have been in the high 60s so no concern from herc/perj. But with this feeling, I'm a little nervous and may bump up the date to next week. I may just have the beginning of a cold.
On to Navelbine. On 10/10, it will be 21 months for me...thank you, Jesus! Since I also have herc/perj, I don't experience the binding others do (perj can cause D so they cancel out!)). I have all 3 on day 1, navel & neulasta day 8 & then am off a week...which is 13 days until day 1 again. Penny, you said they changed your regimen...to what? Getting the neu on day 8 keeps me good til the next shot. My ins requires my center to give the shots. I take Claritin every day anyway, for allergies that hang around always (thank you cancer), so I rarely have any bone pain aside from maybe a little pinch in my ribs...that I actually like, cause it means it's working! Oh, the little things that make us happy!
To all my liver mets sisters...hugs & love & healing!
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RonnieKay - I get Herceptin & Perjeta every 3 weeks, Navelbine every 2. I get the neulasta shot the day after each navelbine infusion. So it's kind of hard to keep track of what weeks I get what, but it's doable. Thanks for asking.
:-) Penny
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Well, my first AC treatment was quite an event. In the end I only got the C. They started the IV after a couple of failures, finally got good blood return, but the veins halfway up my arm turned red and itchy. They stopped the push. Onc ordered benadryl and zantac to stop the itch and quickly clear up the reaction. Tried my other arm, which is on the side of my 1996 surgery. Even though the veins were good, not having been used in 18 years, and the C flowed in well, they couldn't see any blood return. Decided to withhold the A because of the potential tissue damage if it leaked out of the vein.
The hospital nurse educator and the rest of the chemo nurses gathered around me to look at the spider web of red veins traveling up my arm and asked permission to take a picture for the nurses.
So, in the end I got one of the two drugs and will finally get a port. My veins are not happy with all the poking they've had in the past 6 years. After 5 tries and 5 hours yesterday, I'm ready.
It wasn't a terrible time - wonderful nurses, lots of warm blankets, my kindle. Disappointing that I couldn't start the whole treatment, but at least I got something.
love to all and many thanks for your support.
Jill
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Jill....sounds like a rough start of treatment! A/C is definitely easier to get through a port. Glad that you are going to get one. If I remember correctly, I think I always got benedryl first to prevent an allergic reaction. Hope the next one goes much better. Did they have you take emend before the treatment?
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RonnieKay......my echo last week showed no change from last months...I was relieved that it did not drop any further. I had dropped 15 points since starting my treatment. The cardiologist said he does not like to see a drop of 20 points. Your number is in the high 60s.....that sounds like a good ejection fraction number. Mine is at 45 right now. I will have another echo next month to further follow up...that makes 3 echoes in 3 months..so far the insurance has okayed them but I get worried about that....usually it's 1 echo every 3 months. Hope you will feel better and any shortness of breath issues will resolve. As you said, hopefully it's just a cold. Prayers and hugs to you too!
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Jill, so sorry your first AC was so rough. The veins do get tired after a while. The port should make it much easier...it did for me! thinking of you and wishing you the best!
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Thanks RonnieKay! I'm doing great now that I am off the Xeloda. I start Navelbine on Monday...sounds like you are doing well on it...my hopes are high! Thanks for your encouragement!
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Jill,
I am sorry for your rough start on A/C i had ACT as my first chemo, but i had a port installed and i was getting a cortisone injection before the treatment and pills for two days after it . I hope the port will make it easy on you and that you sail smoothly through it . Wishing you a very good response.
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