Chemotherapy for Stage IV
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Thanks Calico & Ronnie. Well, it's official, I start Halaven on Monday. I am concerned about neuropathy as it's the one think that could get me kicked off of it. I'm going to try and be aggressive with B6 & L-Glutamine & see if that helps. I hope so as my progression is not good.
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Syr...I have a whole bottle of L Glutamine powder (stopped me up) but my onc said it works! If you can wait a couple days for the mail...pm me your address & I'll send it to you. I bought the stuff she said is best...would gladly send it to you!!! We need Halavan to work!!!
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Hi, all, did anyone get a sore throat/sore mouth from Doxil? I had my first dose about 3 weeks ago. About 10 days ago, my throat started to hurt, and the inside of my mouth is just generally painful and very tender. If I eat anything spicy or acidic, it hurts worse. I can't identify anything I would call a sore, as in mouth sores. Very strange. I'm seeing my GP tomorrow and will see the Nurse Practitioner at oncologist's office next Monday.
Thank you for your wisdom.
xoxoxoxo
Calico
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Hi CalicoCat, I did not but Biotene mouth wash seems to help soothe my dry mouth, and keep it moist. I have seen others that have used it on AC for the mouth sores. Might be worth a try. Feel Better!
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Yes, Calico, those were the symptoms I had b4 breaking out in mouth sores. Also developed thrush for first time in my life. You might be able to avoid it worsening by addressing it now. They may give you an antifungal mouthwash and/or oral med. Doxil affects the soft tissues & sits in the fat cells.
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Thanks so much, Beachbum and Syrmom, I appreciate the info. I do use Biotene toothpaste, but have never tried the mouthwash.
Several years ago, my onc prescribed something for mucositis. I don't remember having a problem then, but guess I did. After reading about mucositis, which is what my problems sound like, it can get very serious in terms of pain, not being able to eat, and fun things like that. Sheesh! This damn chemo "gift" just keeps on giving!
Anyway, thanks again. I feel better prepared to pursue what to do, now that I have a clue what is causing my symptoms. It certainly isn't starting out like any mouth sores I've had before.
xoxoxoxo
Calico
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Calico, I felt the same way, like no mouth sores I'd ever had. It was very strange - ended up on a liquid diet for over a week because could tolerate anything in my mouth.
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I did ok with that combo back in 2006. Biggest problem was the hand and foot stuff, dose was lowered and it was much better. I have been taking a drug called Metanx ( high in folic acid) which has helped with neuropathy
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Calico...my onc put me on Acyclovir..days 7-11 of each cycle. It was really amazingly helpful. I was careful not to eat food, fruit that was terribly acidic & did salt water rinses, but never had sores. When my daughter got shingles...they gave her the same drug. I was hopeful that would possibly protect me from THAT problem.
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Hi, SyrMom, so sorry things got so bad you had to switch to a liquid diet. Sounds miserable!
Mitzvah, Xeloda gave me hand/foot syndrome terribly. I finally had to go off the drug. For the first time in 9 years of treatment, Abraxane finally gave me neuropathy, which I hate. I've lost the fine feeling in my hands and feet and can hardly put on my pieced earrings anymore because I just can't feel where things are. Is Metanx over-the-counter? Sounds like it's worth a try.
Wow, RonnieKay, that's great that the Acyclovir helped so much with the mouth pain. I'd fully intended to get the Shingles vaccine, but dare not being on chemo. You're right, maybe Acyclovir will guard against Shingles, too.
Thanks so much for all of your wisdom!
xoxoxooxxo
Calico
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CalicoCat- I got the horrible sloughing in my mouth back when I first started Adriamycin.My MO gave me a liquid Rx called "Magic Mouthwash" , a solution tbat is a mix of three things including a numbing medicine. It has to be mixed by he pharmacist. Luckily my mouth cleared pretty quick . Never had it since thank God. Hope your clears real soon.
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Thanks so much, Grammy! I see the NP at the onc tomorrow and will ask her about that.
xoxoxoxoox
Calico
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Hi, ladies, got my second dose of Doxil, and either the neuropathy is getting worse, causing intense burning pain in the palms of my hands, or it's the dreaded hand/foot syndrome doing the deed. I think I exacerbated it by having the temerity to clap . . . yes, I said clap! , , , , at the symphony yesterday. How could I be so stupid???? And how is it possible to have numbness and pain at the same time? I don't know, but it's not the first time it's happened to me. The first time was when I developed a serious spinal cord compression in my neck that caused those symptoms in my arms and hands.
I saw the post about Metanx and am looking into that. Thanks for any other ideas you have.
xoxoxoxox
Calico
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What does everyone use for intense dry mouth? I've tried Biotene but find it actually burns my tongue. Sometimes just rinse with plain water but relief doesn't last.
Thanks ...
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SyrMom...I had very dry mouth (I'd eat yogurt & there would be traces of it all over my lips..awful), even using Biotine. I used Carifree neutralizer spray, mostly when I went to bed, but my dentist said to use it throughout the day (I'd just forget). It seemed to help a bit. I always worried I'd get decay because I was so dry, but it was never a problem.
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SyrMom, I had dry mouth during chemo, and it is still here. I finished chemo 11/25, the last Taxol. I drink a lot of water, but I carry Brach's Lemon Drops with me everywhere I go. I can't shake the dry mouth, and it is so annoying. But the Lemon Drops work for me. I also use Biotene, but it doesn't help all day. Take Care.
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Hey CalicoCat, how's the hands and feet tonight? And it is possible to have pain and numbness at the same time. I am still walking around with numb feet. The numbness in my face has gone away, and my right thumb is doing better. I fell over my numb feet one night and tore the thumbnail off when I fell. But it's coming back nicely. It's the numb feet that drive me crazy. The meds seem to be helping, but I have issues judging temperature with my feet. Hot and cold water in the shower can be a challenge. I was taking B6 when it first started but when I had the level checked it was sky high, so the MO stopped it. I do take Amitriptyline and Gabapentin for the neuropathy.
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Hi, Beachbum, thanks for asking about the hands issue. I was just pondering my palms and their fiery red appearance. Me thinks I have both hand/foot "syndrome" AND neuropathy in my hands. Terrific!
I'm sooooooooooo sorry about your thumb nail, bless your heart, how awful that must have been! You are a trooper.I've been on an anti-seizure drug (Trileptal) every since developing neuropathy in my arms/hands years ago from the neck compression. It's in the same class of drugs as the gabapentin. My doctor doubled the dose when I complained about the chemo neuropathy which is now on TOP of my "normal" neuropathy, but it ain't enough to do the trick. Functional nuisances include having trouble buttoning buttons, getting my earrings on, sewing buttons on. Shower water really burns my palms, etc. and so forth.
Something tells me I'm not going to be on the Doxil too much longer . . . . . .
xoxoxooxox
Calico
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CalicoCat- Yep, neuropathy sure is those symptoms. Numbness with pain- tingling all at the same time. Mine going on 8 years now after Taxol. Been on Amytriptiline a long time now , it helps me to sleep too . Neuropathy less in tbe mornings but worse at the end of the day so on bad days just go to bed early.Have not had the hand /foot syndrome but I read that peeling of the skin happens w/it. Not so w/neuropathy. Keeping hands warm in cold weather a good idea too. Hugs to all.
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Hi, Grammy, thanks for writing. Amytriptiline was the first drug I was put on in 1997 after I developed neuropathy from the neck compression. It didn't help my arms/hands, but yes, it was helpful for sleep. Of course, back then, I was younger and MORE foolish and my expectations were way too high.
I had hand/foot syndrome in spades from Xeloda, and finally stopped the drug because of it. Would you believe the skin peeled off my palms so much I couldn't give a good set of fingerprints? I know, because my profession started requiring fingerprint checks. They tried twice to get them from me, but no dice.
Bless you for bearing up under the neuropathy for 8 years. You are one strong woman!
xoxoxoxo!!!
Calico
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CalicoCat and GrammyR - I forgot the skin peeled off the bottoms of my feet and around my toenails as well. I used plenty of skin cream and fuzzy socks for that. It stopped before the end of Taxol. But I am still waiting for my toe nails to grow back. The new nails grew back in under the old discolored ones. But most of them are looking good, just the two big toe nails to come off and I should be good. My fingernails are almost all grown out, maybe one more trim and they will look good. Until then, I go for clear sparkle polish. Bling!
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Well just got a call from my OC going to start next Thursday on Halaven (Erbulin)...Can I get some advice and se on this treatment please...Thanks... and for all of you helping me and others to stay focus I love you with all my heart...Carla
Also...I just had my last (Red Demon) treatment Tuesday...and I use Baking soda/salt and gargled with it daily...since I have been dx I have never had any soars in my mouth...
I have bone/liver mets...just found out that the last treatment of RD that my markers have gone up on 4 treatments...so i'm going to try the Halaven and see how my counts go (Blood) weather or not a blood transfusion will be needed...OC said probably...
I am so scared that this doesn't work...that nothing will get be stable...worried... Carla
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Hi freebird, So let's give it a try and see where that puts you. I know how difficult this is, but please try to pull up those cancer killing butt kicking boots and stomp as hard as you can. Halaven seems to be the next option, but it is something until its not. Some days I grab every victory no matter how small it may be. But we win for now. And we all deal with today, and we will try it again tomorrow!! You got this! Save those worries for another day!
I hope you have a comfortable weekend. Enjoy the weekend. Take Care Carla.
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Hi, Carla, I don't know if you're like me, but I always want certainty in life, and dang, haven't gotten it yet! My next stop will be Halaven ,too, I think . It was actually the first one my onc suggested this time, but then I reminded him we'd talked about Doxil and he agreed that was a better choice from a side effect perspective, and he knew we had had a talk about my stopping treatment because of the side effects from the Abraxane. I was like, if I have to live with these side effects, it just ain't worth hanging around.
All we can do is wait and see with every new treatment. Miserable deal, but that's our lot in life. No sprints here, just long-distance runs, in it for the long haul, and hopeful to have some modicum of success.
xoxoxoxox
Calico
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Hi Calico, I see you have been there and done that, and I will be there soon I think. I cannot have Adriamycin again due to heart damage. My MO was a bit slow on those little warning signs I guess, and Taxol regrew the tumor way too fast, so the Taxanes are off the list for me too. I cannot do any hormones because I am triple negative. So of the chemo you had did any of them have better side effects than others? Any of those save your hair? Thanks!
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just saying thanks for the cheers Beach & Calico...those positives come in handy for all of us at any given time! Have a good weekend, all!
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Hi, Beachbum! Neither Xeloda nor Navelbine caused my hair to fall out. It wasn't until I hit Abraxane (my 3rd chemo drug since turning Stage IV) that it did, and Abraxane is Taxol with a fat molecule attached, so they may not want to put you on that anyway. I've now "graduated" to Doxil, and my hair is slowly growing back. I think the onc will put me on Halaven next. I haven't' asked about the hair issues with it. Not entirely sure I want to know yet.
In terms of non-hair side effects, the easiest was Navelbine. I needed to nap a lot, and while I don't like that SE, it's pretty benign.
It's a close race for me between Xeloda and Abraxane in terms of which had the worse side effects. I had major hand/foot syndrome with Xeloda. Very painful, and finally had to discontinue the drug because of that. Abraxane has given me neuropathy in my hands and feet, and I was quite dizzy and shortness of breath got worse. Now I'm on Doxil, and after 2 once-a-month doses, I think I have some combo of hand neuropathy and hand/foot syndrome. The palms of my hands are really painful.
ALL THAT SAID, not everyone gets this hand/foot syndrome, so don't fret over that yet. I think the neuroopathy (numbness and tingling) is pretty common with Abraxane, and mostly it's just a pain in the ass to have trouble doing fine motor things now. But as I said, they may not even want to use that one on yoiu.
xoxoxoxox and hugs!
Calico
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Asking about se starting Halaven Thursday...would like some info...Thanks Carla
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Hi Carla, how are you doing? I am still finishing up rads, so kinda having a break I guess. I have a lot of fatigue, so I have been sleeping alot. I have never been on Halaven yet but did you try looking on chemocare.com? If you are like me, I look at that and ask the ladies that have been on it. The real info!
I hope you are staying warm, I am sick of being indoors. But I hate to go any place because of all the sick people this time of year. We have had temps below zero, and the windchills have been -20 or more below zero. Not a good thing for cabin fever. How has the winter been for you?
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Spring...where for art thou????
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