Chemotherapy for Stage IV
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Bren - My thanks too for being such a good friend to our Brenda AND for keeping us informed. I will say extra prayers for her in hopes that they get the pain under control and find out what is causing the leg swell. PLEASE give her BIG HUGZ! Sending lots of Positive Healing Energy her way too!
Sue
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Thinking of Brenda today.
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Thanks for caring so much dear friends. I just got off the phone with Brenda and will be driving back down to see her in a little bit.
I've been posting updates on the Naniam thread.
Coolbreeze ... Brenda did say this a.m. that they were going to switch her from the Oxy to Morphine, so I hope that helps with her pain.
hugs,
Bren
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My mom is starting Xeloda on Monday, 14/7 4 pills morning, 4 pills afternoon. She will also be continuing Femara. She has shown progression...liver and pleura. Any good stories on Xeloda? She had mets discovered to the sternum and vertebra Nov 2011, and last week`s PET scan showed 2 mets to liver and one to pleura...she has been on FEC first and then Taxoter and has monthly Zometa which has already taken care of the bone mets:) all gone....thanks for being out there and listening:)hugs!
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Bren, please give Naniam my love!! Hope they are finding a way to alleviate her pain. Be careful on your drive .... You will be emotional! I'll find the Naniam thread. Thanks for also posting here!
Kimber, did you get to go on your trip?
Buburuzaa, there is a xeloda thread where you might get more info. I tried xeloda but it didn't work for me.
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I spent the day with Brenda and her family at the hospital yesterday. She was doing better, until we overdid it. We spent too much time at the Children's Hospital playground with her granddaughters and by the time we got back to her room, she was crying in tears from the pain. They may let her leave tomorrow after she has her chemo.
Glenna ... you're right, it was a very emotional drive home. I was lost in my thoughts.
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buburuzaa, I have been on Xeloda for about 2 years and so far it is continuing to keep me stable. I am due for scans in the next month or so, but I still feel good. The only SE I've had, and it isn't fun, is hand/ foot syndrome - mostly my feet, which get red, burn, have peeling skin, and occasional small cuts that hurt like hell. Many people only get mild symptoms of this SE.
I use lots of thick shea butter (and bandaids) to keep my feet moist, which helps some. Every six months or so, I take a break from a cycle to allow my feet to heal.
it's a drag, but the worst of it is that I can't often wear shoes I love. I have a couple of soft, cushiony shoes that work when the feet are bad. (Easy Spirit, Anti-Gravity line are great!)
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xeloda is a fairly easy chemo, well, for me it was. Get to keep the hair, that's always good. I liked the one week on, one week off too. It didn't work for me.
Most chemos have a 35% effectiveness rate, so its all about a person's cancer, their genetic structure, their individual map, I guess. If I had to start with one, Xeloda is a good one as far as tolerability. If you are in the 35%, you can probably stay on it which is a wonderful thing.
So, good luck , wishes and prayers to you!
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Thank you. I have stayed away for a few weeks now and feel like I digest everything and then I breakdown every night. My mother has been home from hospital for 3 weeks and has no appetite and terrible nausea. Oncologist called in one rx, radio has called in low dosage of atavan yet she still cannot eat or better yet is afraid to eat because of nausea. It is hard to see her get weaker and weaker. she will start radiation wednesday and then chemotherapy. the nausea meds keep her sleepy during day so of course not sleeping well at night. I know she has such a tough battle, not sure what anti-nausea meds to ask for. Since onco is waiting for radiation to be done, it seems like they aren't helping.
Thank you for the responses. (although it made me breakdown again that someone so far has made me feel better than the people I see everyday or the professionals I ask).
Thanks again.
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My gosh, Tania, that is wrong.
Low dose of ativan isn't going to cure too much nausea. Call the onc and tell them she needs better nausea meds. One thing I've learned is to call call call. If something isn't working, call. If they don't get back within a reasonable time, call again. No one should have to feel like that!
When I first went to interventional radiology, onc did kind of ignore me. However, my recent fight with nausea was more than I could handle. So, I called! I left two messages. Second one said that the radiologist felt onc was still my primary doctor and radiologist felt that onc needed to call me quick.( why not name drop?) She did call in about an hour.
I have to point out that it is my nurse advocate that calls me. I always say my onc, but its not. Its this angel, nurse advocate, helper of uncaring onc from heck. Does your mom have one of those? If so, call her direct. Hope you get better meds today!
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Tania, I hate it that your mom is feeling so bad..I agree with soleil..stay on their butts and keep calling. I take zofran for nausea along with adivan and it works good for me so far. Hope things get better.
Terry
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Tania,
So sorry your mom is having so much trouble. Besides asking for better nausea meds, you should ask for recommendations on what your mom might be able to eat. She needs nourishment!! I haven't had nausea problems but have heard things like finger ale, ginger snap cookies, help. Perhaps she can drink boost .... But do ask someone!!
Keeping you both in my prayers!0 -
We all need to keep Naniam in our prayers as she is going back to the hospital for more testing. Binva has posted on Naniam's thread if you want to pop over there and read her detailed post.
I just posted this on another thread but wanted to copy for my friends here.
Had an echocardiogram today and got a call from the hospital soon after I got home that they want me to have a MUGA scan on Friday. Seems the left ventricle trajectory fraction (?) was lower than they want it to be before my next chemo so they want a more accurate test done. I'm on the same chemo as Marybe was and it is pretty toxic to the heart so don't want to take any chances. I'm guessing I won't be able to get the next adriamycin treatment. It would be my last one anyway as I'm nearing the lifetime amount allowed. I'd love to be able to have even a small chemo break before going to Ireland Nov. 9th! It's always something!!0 -
Thanks Glenna,
I'm confused. Is that about you? Are you on adriamyacin? So scary. If so, please get right off of it. Don't take any chances with your heart.
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Yes, Soleil, I'm on the adriamycin .... It's in a safer form than what Marybe got, but adriamycin all the same. It's encapsulated in fat cells and supposed to be NOT SO toxic. They call it doxil. I'm pretty sure they won't want me to have the last treatment. They have to count the adriamycin I had in 1987-88 as part of my lifetime allotment.
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Hi Glenna,
I've not had any of the anthracyclines (yet) and didn't know about a lifetime limit. Could you expound on that? What's the limit? How is that measured?
Thanks!
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Surly,
I really don't know the lifetime amount ... Have been told by my onc who I have been seeing since my original bc in 1987. Back then I had 8 treatments of adriamycin but I honestly don't know the amount. This time I have had 5 and supposed to have the 6th and final on Oct. 31st. Our lovely Marybe pushed her onc to exceed the limit since she was doing so well on it with few SE's. Unfortunately for all of us who loved her, she died of congestive heart failure, a SE of the adriamycin. My only SE up to this treatment had been fatigue. This time, however, I have the hand and foot syndrome but only on my feet. They are also red, swollen and itchy. Also had an itchy rash under my clothing. They constantly monitor your heart while you are on this drug. They look at the ejection fraction to see how well your heart is pumping (at least that's how I understand it). Sorry I'm not more help. I'm one of those who just trust my onc and don't ask for details!0 -
Glenna, I was so frightened for Marybe when she pushed that. I think its insidious, it doesn't happen all at once. One day, you are a little short of breath, few days later you are wondering how you will make it up the stairs. Because of this, it is easy to miss. Glad your onc is right on top of this for you.
Didn't know doxil was an adriamyacin but I think Marybe had the same problem. She had taken it earlier and was on her lifetime limit, right?
There must be something else you can take. Correct? I'm praying for you now. When I was having reaction to abraxane, doc said last treatment could be skipped with little difference to outcome. Ireland is going to be lovely for you. Take care!
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Soleil, I do remember Marybe had reached her limit. It is scary stuff, any chemo, but especially those that cause serious damage to other major organs. I'm leaning towards skipping the last treatment no matter what the outcome of the MUGA is. My feet really bothered me last night and I've decided to stay in bed today with my feet elevated. At my last visit my onc suggested there were many other options on the table but I think I'll ask to wait until after Ireland to start something new. Surely don't want unexpected SE's while out of the country. I don't think a few weeks will make that much of a difference. Are you feeling better this week?
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Glenna, Good to hear. I don't think a few weeks will make that big of difference either. At least, in my case, when they have to change treatment for this reason or that and they can't arrange in time, they always say, a couple weeks won't matter. When they can arrange, its always a big emergency. That's my experience. I feel better about you going off it. You are talking about 3 weeks, maybe 4. You know that stuff is still working inside you. Maybe your onc will have you take a hormonal. My onc is hormonal about me taking the aromasin daily. Every time I talk to her, she reminds me. I was off chemo for over a month before this treatment. She kept reminding me to at least take the aromasin.
I'm still a little nauseous, past the worst. Makes a soul very depressed, thats for sure. But the scans were moved up to the 6th, so, I'm very happy about that.
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Thanks, Glenna. Since I'm fairly new to the boards, I had read some of Marybe's posts before learning of her abrupt decline and was startled as well. I understood it was heart failure but didn't know the backstory. That is so sad and scary.
It also leads me to another question--for any of you who are on anthracylcines or have been on Herceptin a long time. It is about whether any of you have seen a cardiologist who has recommended a preemtive strike by prescribing beta blockers or ACE inhibitors. I have seen some discussion of these on the boards when I've done searches. But my question really is about the preemptive or preventative philosophy.
I also have echos and MUGAs regularly, because I was on Herceptin 2 years and then after a break started again this summer. My onc was recently considering Doxil for me and sent me to a cardiologist to discussmy heart health. My EF is 60-65 right now and I have no other heart issues other than trace a "leak" that is not uncommon. The cardiologist was very eager to start me on beta blockers, even though I'm on Gemzar, not an anthracycline. I began to question the wisdom of this because I'm already struggling with lethargy and fatigue and started Ritalin recently, as well as have been blue dealing with more unhappy disease progression news, and she backed down immediately. Instead she said she understood and agreed a wait-and-see approach was wise. There's also the issue of whether insurance will cover this type of preventative business--echos, visits, prescriptions--when I have no cardio-diagnosis. I saw my onc a day later and told her I was concerned about the beta route and she agreed that waiting and seeing is the way to go but that we didn't want to be unable to give me a chemo drug later because my heart was not up to it.
I don't want to brush asided concerns that I might lose heart function rapidly and unexpectedly. I'm 47 and otherwise healthy (um, not counting liver, bone, and now brain mets). So, I guess my question is:
Have any of you faced this question of preemtive treatment to protect your heart from chemos that can have adverse side effects on the heart?
Thanks for your thoughts.
S.
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Surly, I to am er/pr- and Her2+. This is my 2nd time around, with mets to my ovary/bladder (fused together as a mass). I did A/C and Taxol/Herceptin 5 years ago. I stopped the Herceptin at the one year mark because my onc felt there was NED. Fast forward to today and I did six rounds of Taxol/Carboplatiin/Herceptin, I now get Herceptin and a new drug called Perjeta every 3 weeks; they work in conjunction with each other. There seem to be good results but, i'm not sure all of the spacifics on when it can be used. This might be something to check into.
~LORI~
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Surly,
My onc and I have debated this and two weeks ago she put me on preventative beta blocker since I am on Herceptin, have taken adriamycin in the past and also take perjetA. There is some research that says preventative ace inhibitors and beta blockers may be helpful in cases like ours. I have not had an echo in a few months as I did not want to get kicked off the chemo because of a bad echo but the pharmacy at the hospital is insisting on an echo soon. My last echo was in Feb and that was ok. I did not have any problem with insurance.0 -
Hi Lori, I was on the Perjeta regimen and still follow that thread, but it didn't work for me. I had a bad scan after the first three infusions. I was trying to get into a TDM1 trial but didn't get in because the pre-study testing showed I had a three tiny brain mets. I had those treated this week with gamma knife and am now on a different chemo.
I hope the Perjeta is working for you; I know it is giving some people fantastic results, though it's a bear at first.
I'll continue to ponder this beta blocker or ace inhibitor idea. One thing at a time.
Thanks.
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Surly, Can your doctor put in orders for it , just to see if the insurance will cover the procedures?
Just thinking it would be good for you to have that knowledge in hand while making these decisions.
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Thanks, Soleil. Good idea. I'll look into it. ...I am dealing with a lot of insurance unknowns right now because I had to get a referral to the University physicians for the clinical trial, then the referral broadened when the brain mets were found. The referral expires end of year, but we're als approaching open enrollment, so I have to figure out where the heck I can be treated for what where under what plan. Ugh. I hate health insurance--any insurance!
Thanks for letting me vent!
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Good morning,
Just wanted to say hi to everyone. I haven't been feeling so great so just been lurking the last month. Just wanted you all to know I'm thinking of you and praying for you.
Hugs kimber0 -
I'm thinking of you too Kimber! Sending hug right back
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been thinking of u alot too Kimber glad ur doing good love to all
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Ok, so I started abraxane today. 3 weeks on 1 week off. Feel a little nausia but other than that it's ok. I was just wondering, can I expect to loose my hair again? The onco said it might thin but that I wont loose it all. What has been your experience?
Thanks. Hugs from Alice0
