Chemotherapy for Stage IV
Comments
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Cool Breeze, I enjoy reading about your hair loss, its my predictor. Ii think you are three weeks ahead of me on Abraxane My hair is so thin, its see through. But happily I still have bangs. I still have enough hair that when I wear a baseball cap, people think I'm wearing a baseball cap. this helps me keep mental balance. Newest problem is horrible pain in my ankles and thighs.
I was freaking out yesterday, thinking it was progression. I reread the side effects and I now think its a side effect. Oddly, this is my week off and the pain has intensified the past two days.
Do side effects come and go or do they stay and intensify?
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Are you on any hormonals? I don't have pain from the Abraxane and mets don't usually show up in ankles. It might be from your hormonal? I do get cramps once in a while though - every chemo has given me cramps in my feet and calves.
I have so many other issues right now that I have no idea what is a side effect from Abraxane, what is leftover from c-diff and surgery. I have stomach pain that gets terrible and then goes away then comes back. I have low-level nausea. I can't eat much. I don't know what any of that is from.
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I think if someone asks me how long I have, I'll take off a shoe and ask them to look for the expiration date. If it didn't tickle(hurt) so much it would be funny to have a UPC code down there, then we could tell them to scan it with their smartphone.
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After 6 years my BC is back and in my bones. In the past 2 months I've been given so much information and I've asked so many questions that I'm not sure "which end is up". Thank You for all the information you have posted.I am getting Foslodex and off hand I forgot the other medication but it's for my bones.
I've been having a rough week. I'm been having a bad case of what I called in 2006 a case of the "what if"s". (What if..this didn't work? What if..I need some other treatment? What if...) I've been so afraid that ever little ache or pain scares me. The doctors and other staff reassure me but I just needed to hear from people on my "side of the fence". Thank you for helping understand other options and not feel so lost in a mountain of information.
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Hi Suzie
Sorry you've found yourself back here but welcome to the gang.
"What if's" are such a waste of energy aren't they? Guess we all do them at some point, especially at the start. Focus on the here and now as much as you can. Bone mets are, for the most part, the most 'doable' I have multiple bone mets and so far, get no symptoms from any of them, although I do ache after my monthly Zometa for a couple of days.
Hugs
laurie x
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There are alot of people at my onc clinic that have ports in their arm.... I have a port in my arm and it is fine. It does not really bother me. When they first put it in.... Ouchie. But it healed really fast and since then, I forget it is even there.
Marybe- thank you for advice. Spoke with another onc-- his advice was to do what you feel would be best, they both have pros and cons, but it is ultimately my decision. So still at square one!
That whole conversation with the teacher still plays in my head.....why why why would you ask someone that???? I just don't get it...0 -
Cool Breeze, I think the low level nausea is from the Abraxane. I have that for 1-3 days after treatment.
I read the side effects again the other night and foot, leg pain is one of them. So is water retention. I think thats what makes the pain in I'm going to the doctor on Thursday, I'll see what she says. I'm hoping for scans. I really want to see if this is working, I'll walk like Chester if its shrinking the mets
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Kfontaine,
I hope you don't mind another person's point of view on the "odd, inappropriate, insensitive, uneducated" things that people say. There have been times during my journey that someone has said or done something that just "boils my butt" and I just can't shake it. I am not sure why one dumb statement makes me crazy and another does not.
What I have started to understand about myself is that I am angry. (Earth shattering, I know.) Plain and simple I am damn pissed at my inability to "fix" this cancer. I can't control it and I do love to control. I get sick of all the crap we all go through that no one could possibly understand unless they were in our shoes. So, when someone says something like the teacher said to you, it gives me a place to focus the anger. I carry it around and reignite my anger at the thought of the whole thing.
When I had one of these sort of situations, I contacted the person and shared how they were making me feel. I felt like such a small person that I couldn't just get past it but I just had to try to get it off my mind. This was the funny part. She didn't get it. She thought I was talking about other people. I have to admit, I was boo-hooing during the conversation so maybe I was really hard to understand. She continued to talk about her experiences and there was clearly no need for me to be in the conversation. After that, I just thought to myself that I cannot waste another moment on such a self centered dumb a**. Sharing how you feel in this forum helps. Getting support from such generous people that are dealing with such a huge challenge makes me want to be on their level and not on the level of the oblivious.
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Very well put. I think I understand my own emotional place better because you took the time to very eloquently explain yours. Thank you for sharing.
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I am enjoying my chemo break. I am taking the month of May off. 2 things for sure--my appetite is off the charts and my energy is crazy. In other words it feels like the "real" me for the first time in 15 months. When June 1 rolls around I will be sad to start back up again. The Xeloda and Tykerb have not been that bad-mostly stomach issues. On my way home from work on Friday I "grazed" my way down the highway. French fries at Burger King, then 2 cheese coneys at Gold Star (an Ohio chili parlor), hen a hot fudge sundae at United Dairy Farmes then topped it all off with a frosty mug of rootbeer at a hot dog stand. I have been off junk food for a year but I covered all my cravings in a 1/2 hr span. (made me sick as a dog but so so worth it).
I am going like a madwoman to get all my gardening done. My hands and feet are slowly getting back to normal-my fingertips are ultra sensitive so I am wearing gloves-a habit I never developed.. Big vacation at the end of the month too.
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I've had such an easy time with chemos that I hadn't really considered the Abraxane but I guess that makes sense. I have no appetitie and always have this slight nausea going on. Have some food aversion too - there is almost nothing I want to eat and that's new.
I'm wrecking my teeth because my main diet is candy.
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Thank you Chikadee. You made my day.
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Enjoy your month Lily lady
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Yeah Lilylady, I'm glad you have energy already and keep it up! I hope you get everything done you want to do and more, and feel normal again!
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It's near the end of my off weeks. Chemo on Wednesday. I always feel so good the week before chemo that it is hard to get back in that chair. Lilylady, enjoy your month off and try to do all the things you want to do. I had to laugh at you satisfying all your cravings as you drove down the highway. Sure hope you have a great month of May and a wonderful trip. @rjdrobyn, I'm with chickadee .... I guess I never thought about being mad but when I read your post I thought about times that I have been angry for no good reason. I end up taking my anger out at my DH (he's not always so dear, LOL) but really, it's my situation that makes me angry. I am just not good at expressing it. I tend to keep the anger in and try to gloss over the crap that goes on in my life. Thanks for posting and causing me to take a good look at myself. Ann ... Do ya still have some hair? Sorry you're having trouble with your appetite. I'm always hungry but can only eat small amounts at a time. My stomach is bloated from the chemo (that's my story and I'm sticking to it) so I get full quickly. But still, I continue to put on the pounds. You have lost so much weight but it sounds like you have always been thin. The liver resection and c-diff didn't help either. I hope your appetite improves and you can gain a little weight. Suzie, sorry you're back but glad you've been finding some good info here. I didn't find bco til 3 years stage IV and would've had a much easier time had I been able to lurk here before dealing with SE's and freaking out with the what-if this pain is progression questions. It's nice to read that others on the same treatment have the same SE's and that what I'm experiencing is not more cancer. Best to you all for a glorious spring week!
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Marybe: Loved reading that your markers are down......good news!
I started Taxol Monday (every three week infusion). Not sure what the Zometa schedule will be. My calcium is elevated. Onc said the once a month Zometa I have been getting should be keeping that down, so not sure what all that means.
Hoping all is well with everyone. Still trying to catch up on the chemo thread. Few pages at a time. Jean
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My oncologist called today and said that we need to move to chemo due to my scans. I'll be coming from Faslodex to chemo. He wants me to come in Monday, said we have several options and we need to talk face to face and discuss the drugs and their side effects and decide. I have not a clue what drugs or what is used most, which one has the least side effects. Guess I need to read this thread and see a bit about the chemo drugs and what side effects have been.
Do you loose your hair on all the chemo drugs?
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I can't offer any advice, but I wanted to give you support. It's a scary transition-any progression is- but it sounds like your doc is very communicative and you'll have a lot of information before you have to make a decision.
Wishing you the best, and most of all, hoping that the next treatment kicks those damn cancer cells to the curb!
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Naniam, Xeloda is a pill form of chemo. I think I'm losing more strands than normal but its not falling out in clumps as I've heard the infusion type chemos cause. I'm still too new to the chemo side yet.
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Chickadee, looks like we will learn about this chemo stuff together. I did mention Xeloda to the oncologist today and all he would say was that this was one of the options we would talk about along with the side effects. I've heard of Xeloda but not sure what lots of others have tried when the progress to chemo but then it is based on where the mets are and probably oncologist have ones they feel they get the best results from. Overwhelming and confusing - so many side effects from the Xeloda - think it causes the hand and feet issues especially.
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So far I've escaped the HFS. Knock on wood. It bothers me Gastro wise. Going on 7/7 has helped tremendously. By day 6 my stomach starts being miserable and on 7 I force the last 4 pills down and look forward to day 8. If it clears up some liver mets I'll be so much less worried.
My onc chose X when I ran out of hormonals because she said its gentler and worth trying before the heavy guns.0 -
Yesterday, I told my onc about this horrible leg and foot pain. It is a form of neuropathy. I'm on Abraxane and it is a side effect. New pain in my spine is also a side effect. Just thought I'd share in case anyone else on Abraxane is feeling paranoia due to new pain. I always thought neuropathy was a tingling or inability to use foot or hand. It can also be a pain, nerve pain.
It is a pain, in fact ")
This news gave me hope, in an odd way. As the pain progressed so did my evening terror. Now, I just tell myself it is a side effect and I'm going to try to fight it. im not sure if exercise is the right thing. But I'm going to try to do the elliptical at night and see. I used to go work out every morning. Had to cut that out due to awful pain the rest of the day. I'm thinking if I go after work, I can take a pain pill. I can give it a try. I can even use the hot tub there at the club. And if I'm exausted I can come home and lay on the couch , which is what I've been doing anyway. But now i'll have worked out before laying on the couch.
Another horrible thing, well horrible to me, is the weight gain. The doctor said the majority of breast cancer patients gain weight. Oh joy! Gaining weight is bad for tall women, but gaining weight is disaster for a 5 foot woman. 5 lbs pounds can change a nice looking gal into a chub. Another 5 I will be potato. So, maybe going to the club is the answer. I know part of the weight gain is my fault, and she even sited cases like mine. Women sometimes say to themselves oh what the heck, I'm dying, give me more of that chocolate cake. I've been doing that. So, we'll see how long this lasts, I'm writing down a diet, going shopping for healthy foods and planning weight loss by the next visit.
Anyone have any GOOD low cal energy smoothies? If so , please let me know.
l
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Naniam / Chick,
While I know there is a lot of great information about chemo on this site, you can also read an overview of various different drugs here:
There are a list of names on the left hand side and you can click on these. Alternavtively if you skip back a page or so, it tells you some of the most commonly used combinations. Xeloda is under it's other name of Capecitabine
Laurie x
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Thanks Alesta - I'll check that out before the oncology visit on Monday.
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I am on taxotere, carboplatin and herceptin. I have been having headaches... They only last a minute or so and it is always in a different place. I have had 4 treatments so far, I was wondering if anyone else on the same thing experienced anything similar?
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Soleil,
I hear you about the pains due to side effects, but I am on tax, carbo, and herceptin. My onc will not say it is a side effect but another onc I saw said it was the taxotere. But yes, pain in my back, neck, and then sometimes random pains in my limbs.... I know t he joy of pain. But if it is just side effect that is fine by me. I walk every morning ( god willing) but I think it helps, not to say I am sleeping on the couch at 7pm... Thank goodness my husband is so understanding, since he has to deal with the kids.
And weight gain.....holy moly.... Every time I weigh in at docs another pound has creeped up on me. I try not to overindulge but......eeeeeekkkk. Sometimes all I want is sweets and carbs, especially chemotherapy week!
1 frozen banana
1/4 cup frozen blueberries
1/4 cup frozen raspberries
1/2 cup of milk 1%
1/2 tsp vanilla extract
1/4 tsp almond extract
Pinch of cinnamon
You can add some rolled oats to blender before wet ingredients also. Also you can add some Greek yogurt for protein or use it instead of milk and add ice. You can also skip the banana, if trying to cut down sugar. Hope you like it.0 -
K Fontaine, Thank you for the recipe.
I"m hoping next weigh in shows a little loss instead of another gain. the leg pains are pretty bad but knowing its a side effect does make it a little more managable.
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KFontaine - I am only on Taxol, but get similar headaches. It feels more like someone is drilling into my head at various points around my skull and wears off during my week off... Anyone else get / had this SE?
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My onc says a chubby cancer patient is a good thing---he is unhappy that I have lst so much weight on the Xeloda/Tykerb. He says better drug absorbtion ect. When I first got dxed I was shocked to learn most people gain weight on chemo. I put on 15lbs on TCH and was laready 15lbs over weight. I totally get the I deserve the xtra piece of cake thing-and sicne everything I eat comes right thru anyway I have been doing that quite a bit,
Everyone have a Happy Mothers Day-and eat all the cake you want!!
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One thing for sure the days of being able to spot the cancer patient because of the emaciated frame and gaunt look are gone.....although I am sure there are exceptions and some do loose weight and lose weight. I have never lost a pound due to treatments and look as healthy as can be....am always getting the comments as to how good my color is and to tell you the truth sometimes it annoys me. I feel like saying well, thanks, but looks can be deceiving, ya know. The important thing I guess is how we are feeling. Have you gone on your trip yet, Lilylady?
I did not get the hand foot syndrome when I was on Xeloda....used lots of bag balm and working hands and wore gloves and socks to bed....I really did not get any SEs with it other than constipation which I get with everything.
I was always one who never wanted to do any sort of chemo, also a friend likes to remind me that the lst words out of my mouth were, Will I lose my hair? when told I had cancer. That was a long long time ago and now the hair is not really such a big deal to me, I just worry about whether or not the chemo I am doing at the time is working.
I took several things that seemed to help with neuropathy...L-glutamine was one of them....think B was another one. Also if you are having leg and foot cramps, tonic water helps...it's the quinine in it....however, this is for muscle spasms and that type of cramp so don't know if it would help with nerve related or not.
I hope you all have a nice Mother's Day. Cake suddenly sounds good to me....the white kind they used to sell at a local bakery. Thanks for posting LL....it's much easier for me to get to the old topics I used to follow if they are active...have to scroll too much otherwise with the new format.
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