August 2010...anyone starting chemo besides me?!
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Hi Lisa--I am feeling the same--not much energy at all. I gained water weight through the steriods and my face is bloated--they say to drink a lot to combat it--and I am but hasn't worked yet--one week post last chemo. My local support group offers an exercise program aswell at no charge--personal trainer once a week and then exercise. I didn't start in November as I was still on chemo and didn't know if I would be able to go each week so I am starting in Jan. Yesterday, I went for hour walk and then visited with friends and was completely done by 7pm--honestly had no energy. I really do wish that I could do more...that is what I wish but I know it will have to come with time. I start rads in Jan and the thought of dragging myself there everyday for 6 weeks is exhausting
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Hi all,
Hectic week, my son's been sick so I haven't been on much. Looking forward to having time to catch up on posts:-) I meet with the onc at 12 today (was orginally just supposed to just get treated) to discuss my neuropathy and what she wants to do as far as treatment. Wish me luck.
Carolyn
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Spoke with financial services - they agreed to accept $100 a month towards our 2K bill. I don't even know if we can swing that, BUT I'm wondering if we skip a month or whatever, or send them $50 instead, if it will at least keep it out of collections.......the lady on the phone was very nice. I played the "breast cancer I have no money" card........
Just praying for DH to be able to finally get his raise and review.....he got a little overtime but not sure how much it will add up to. This has gotta be one of those God WILL provide situations!
Shipping some orders out today and then off to walmart to buy candy for the kids' gingerbread houses that they want to make. Have to do fun stuff with them this time of year!
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Good Morning Chemosabes and Radicals:
Where have Gingerbrew and Wherria gone? Hope you two are ok.
Calamtykel: I am glad you got some satisfaction from that bililng dept. I am sorry if I went a little overboard with advice but I was in the financial industry for 10 years and learned *A LOT* through that process. I just wanted to pass on what I knew to be true. If you send less there should NOT be a turnover to a collection agency. As long as you pay something you should be ok.
Rachel: I know what you mean about being done at 7. I fall asleep at 7:30 sometimes. It is just so fatiguing...the whole process. I won't be getting rads until May because of some PS that has to take place in the middle but I do not look forward to going ever day either. For me a 20 minute zapping is going to take 2 hours with travel time. They say it takes about 6 months to get over the fatigue from chemo which means in May I will be about 4 months out from chemo just in time to get zapped by another fatiguing event. I hope by next Christmas my energy will be back.
Ckptry: Good luck today. I hope they have good, solid answers as to how to proceed and to get you some sort of therapy for the neuropathy. Let us know how it went.
Well, I have errands....then probably a nap! Have a good day-
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ckptry - I am interested to hear what your onc says about the neuropathy. thx0
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Rachel I finished up my chemo the day after Thanksgiving, round about the time you did. Went back to work on Monday, however by noon today (Friday) I was really tired. Irritable, cranky and offering no apologies. Stopped for ice cream on the way home and began my nap with the dog. We are going to get stronger and better each day. Beth0
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librarylil - Congratulations on finishing your chemo!!0
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Hi Everyone!
Thanks for the advice Lizzy, I slathered the bothersome area with Aquaphor and put a telfa pad over it yesterday and today and that helped a lot.
Lisa: Thanks for the info about the YMCA exercise program, I am definitely going to check it out. I finished chemo October 1 and still have significant muscle weakness, especially my legs. I asked the oncologist and he said it could take up to six months before I get back to normal, but that light exercise would help.
Calam: Glad you were able to work it out with the bill. Usually with medical bills, as long as you are paying something every month you are okay.
I'm trying to get in the the Christmas spirit, but I just don't seem to be able to. We will decorate this weekend, hopefully that will do the trick. Right now, I am going to bed, I am exhausted. Going to watch Polar Express in my bed with the kids. Hopefully I can stay awake to the end, LOL.
Hope everyone has a good weekend!
Debbi
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It's been a crazy day!
I have a question for those of you who had mastectomys and lymph node removal.I went running on Saturday night and Sunday my rib cage in the front started hurting right at the bump. I can't recall if I posted about this before. but it feels like a bad burn or bruise if I press it and it's all around there extending to the side where my drains where. But it's on my back too - on my shoulder blade. It's like a burning feeling if I extend my arm across my chest, or lift it up. If I lift it, I can feel it really pull around where the drains were. The most annoying thing is that when I straighten my arm, I can feel like a string pulling all the way to my wrist!
I looked this up and it sounds like "cording". Has anyone had that? It has to do with the lymphatic system - it's not lymphedema but may be related or may not. Most places said it goes away on its own - for some women it comes and goes.
I'm due to make an app't with the breast surgeon anyway, but I'm bothered by this and what it means,I've suddenly lost a lot of range of motion in my arm! It's as strong as the other side but I can't lift it, etc. I tried doing quite a bit of scar massage and massaged the area that hurts by my rib and now tonight I seem to be able to pull my arm back without it pulling in my rib cage as much.
Anybody else have this? Some website I read said these are "ropes" or something like that. It's weird that it's right along my old drain site!
Had a wild day shopping for gingerbread house stuff with the kids - mixed up five pounds of powedered sugar and mirangue powder into icing and they are putting them all together now while I'm crashing. THen Dh came home from his office Christmas party and won $300 cash in an envelope game.
They also gave out cards with $100 in it. So it's definitely welcome this time of year!0 -
Calamtykel, here's a page about "cording" (Axillary Web Syndrome) that was put together by some of the women here at breastcancer.org -- because, yes, it's pretty common. Hope you get good relief soon!
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Be well!
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Thanks for the info! Overwhelming! I dont' think I can see my cords like in the photo - I'm disturbed that it's a risk for lymphedema. 12 out of 18 women developed it, yet it says that 95% of women have some form of cording in the months following a mastectomy..........
I am praying it resolves. I can't afford PT with co -pays at $50 each.
Seriously can't afford it. This just stinks - Thanks for the info though! I will be interested to hear what my breast surgeon says.
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As far a financially being able to pay your bills, ask the hospital if they offer any help. My daughter lost her good job in Oct. then her son had to go to the emergency room right after she didn't have insurance and they got her bill paid 100 % they told her they have grants for stuff like that idk 1st heard of it.
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Calamtykel: I am no doctor and this is not a replacement for medical advice (!) but do you do any light weightlifting? It might be hard for muscles to "cord" if they are developed. Again, I don't know anything about cording and feel for you that this seems to be your fate but I was just wondering if lifting might help. Good for you on running. I just feel bad that this other business is causing you issues.
As for financial assistance, hospitals have it but physical therapy practices are often not part of the hospital and don't have the same financial support. Fight this cording...of course ask all the docs etc.. but if you get the green light on lifting, do it. My muscles are pretty well developed but I can't imagine that would stop cording but I think it might make it harder for it to get started. I *think* anyway!
The Office: I just watched the episode where Stanley has returned to work from having a heart attack and Michael brings in a person to illustrate, on a dummy, what to do if someone is having a heart attack! It was hysterical!
Good night-
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Iowasue: They told me they could only refer me to financial assistance if I had no insurance.
Maybe I should just ditch the insurance!Lizzy - the cording isn't so much in my arm as in my rib - and i can feel it pull in my arm. Now it's feeling better - I can get my arm all the way back. When I lift it very high, I can feel it pull in my sides. Now the bad part is my back and shoulder blade. It's definitely no muscular - I've pulled muscles before. It's kind of in the skin, which makes sense. I couldn't even lie on that side last night because my shoulder felt like it was burning; like the nerve endings are close to the skin. I keep trying to see if it's swollen. My arm isn't but the back of my shoulder is I think - but I think it may have been that way before - it looked like that right after surgery and it's been 5 months.
I do lots of arm exercises - I'm pretty strong. I don't know if cording has anything to do with muscles, unfortunately.
Just hoping and praying it passes. I'm doing massages on it which did help it in front I think and will continue to stretch. I can't figure out if running makes it better or worse? 0 -
OH - lizzy - I don't think it's the actual muscles that cord. The "cords" are actually lymph paths and I think they become inflammed or something. It's a fairly unresearched and new thing as far as I know. I guess that's why I can feel it at my drain site and the path where the drain went!
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Good morning chemosabes and radicals:
Calamtykel: I cannot believe this cording business. Apparently it is called "fascial cording" and it can be remedied by stretching and soft tissue massage. To be honest, though, it is just all so much sometimes. We have bc, we are on chemo and we are, seemingly collectively, struggling to get back to some sort of normalcy and for most of us that includes working out. You go for a run, trying to get yourself back to some level of fitness and this cording business presents itself. It can just be so frustrating. I feel for you. If you have a yoga ball hold it in different positions from below your waist to your upper chest and keep squeezing. I read that squeezing a ball helps. I was told after surgery to squeeze the yoga ball. Also, as for PT, you can get a soft tissue massage at a day spa. I just can't believe that this is also in our paths. Apparently, if it is stretched too much they can either stretch or break and when they break, you feel immediately relief. I just was unable to find out what the side effects of the breaking are. I hope you get some relief and good for you for running
Just be cautious when you are out running and if you wear headphones/buds, only use one so you can be in tune with your surroundings with the other ear. It sounds like you live in a very bucolic, almost farm-like setting but just err on the side of caution and wear one bud when running. BTW, the running probably exacerbates this latent condition as it revs up your body, plowing fluids through your entire system at a much faster pace (obviously!) than when you are sedentary and this is what undoubtedly caused the incapacitation of your lymphatic system which totally sucks! The last time I got on my treadmill I felt like I was going to pass out and had to go to bed. I am looking forward to 1 year out from all of this and being back in some decent shape. This chemo-induced fear of revving up my system with working out is getting on my very last nerve. I am so glad this is my last month with this mess!I hope everyone is having a good day
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Calamtykel: I found this link which is a forum but it seems like it is docs and physical therapists:
http://www.medhelp.org/posts/Breast-Cancer/Fascial-cording/show/259250
They talk about this cording. It is interesting.
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Hi all,
Just wanted to check in . My 5 yo said he was tired of me being sick this morning, that I've been "sick for 40 days". From the mouths of babes... I'm tired of it too and I wish it was only 40 days, lol. Anyway, we went out to breakfast and we're going to do some Christmas decorating so hopefully that will distract him. It's hard b/c people haven't really offered to watch the kids and I don't feel comfortable inviting people over b/c it's hard to keep up with the housework. I think we isolated ourselves a little when we found out the kids had special needs -it's hard to see all the kids the same age doing things yours aren't and we were so busy with early intervention therapies and doctor's appointments. Last year I tried to connect more and then I got cancer and now I feel like the other moms treat me a little differently. I miss when I was younger and my parents would just open the door and send us kids out until the streetlights came on:-) It seems like everyone arranges playdates now and it seems intimidating to me. I don't know, I tend to be harder on myself when I'm feeling down and lately I just feel run down by all this and I feel like I'm just not being a great wife, mom etc... I guess feeling tired all the time is starting to affect my mood. Sorry for the bummer post - I'll make up for it when I'm feeling better.
kel -I'm so sorry to hear about the cording. You really have so much going on lately. I'm in awe of all you do, especially the home schooling. The two hours each morning when mine are in school at the same time is my only down time and I don't know how I'd manage without it. I hope things get better for you soon; so glad your husband got some extra $ for the holidays!
omaz - do you have neuropathy too? They decided to hold my chemo yesterday - I just got herceptin. She said i could take a 1 or 2 week break but I chose 1 b/c the more dlkeay the later I finish. She said she really wants me to get all 12 treatments and prefers not to do it at a lower dosage. She said while she can't guarantee a cure this would be the standard for me and as I am young and have young kids she wants to strive for a cure. That said she's going to switch from seeing me very third treatment to every treatment to assess the neuropathy before each treatment. I don't know how I feel. I had made peace with not being able to finish but she scared me with the comments about my kids, I mean of course I want a cure to but I don't want to end up disabled by the neuropathy. So just hoping now I can finish the treatments. This is some roller coaster ride we are on.
Carolyn
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Carolyn: Are you on Taxol or Taxotere? My onc is giving me Taxotere because he said it has less chance of neuropathy than taxol, but he said they are basically the same drug. So you might ask if you can change drugs to see if it helps. I have a little tingling in my feet, but nothing serious. Love the 40 days thing, kids tell it like it is, don't they?
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Carolyn: I love the way kids arbitrarily make up numbers and toss them out! As if he has been counting and "40" is the number! The play date thing, even though I don't have kids, is a headache. I have quite a few nieces and nephews and a Godson. Also, a friend of mine lives in the uber-posh Greenwich where play dates are an absolute must. She has her social secretary keep track of her son's play dates! I think her social secretary is going to take his life soon! In any case, it is also isolating as kids are all into their own clicks. The other moms probably are not treating you differently but you just might feel different. I agree the old days with "get in when the streetlights come on" were fun times! Play dates are a pain in the arse!
We all feel run down. I have to schedule naps now, sadly. With all we are going through, trying to be a great mom and wife is very difficult when you really have to be great to yourself first. This means rest and not being able to be as active as you have been in the past. This also means being able to be more active, healthy and energetic in the future. I know a 5 yo will have trouble understanding this, however. I hope decorating is occupying him today!
Carolyn, better times are coming. We all feel the same way these days. Hang in there and don't forget to smile at yourself in the mirror! It works!
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Carolyn - I agree with Lady, taxotere is very similar to taxol and is not thought to have the same neurotoxicity but has similar efficacy (depends on what you read!). You could see about switching. Yes I do have some neuropathy which started after my first infusion with taxotere/carboplatin/herceptin. Each time it get worse, then resolves some but to a little more left over numbness. I did see a neurologist who was confusing. The first time we saw him for the physical exam he said I had 'significant' neuropathy. Then when I went back for the nerve conduction study he said it was within normal limits. Apparently it is not a very sensitive test and the problems may not show up on the test until later so I go back in 3 months. I have done 5/6 chemos. My onc said I should think about number 6 between 5 and 6. I am thinking about it. I don't know what to do for sure. I have had a lot of SEs. I am in awe of the women who have few. I feel pretty wimpy but it is the way it is. I feel like I 'should' do 6 but at the same time there is no data proving that 6 is better than 5, or even 4 only that 6 was the regimen tested. So those are my thoughts. I think if you can change to taxotere it MAY help, or may not - of course there wouldn't be an easy answer!!!0
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Cal: I'm so glad to hear your DH came home from that party with some loot! You needed something good to happen. Will that help you Christmas shop for your children?
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Ann- I have some stuff for the kids for Christmas.
Hopefully the $300 can go towards bills! =:OLizzy - I agree. We should have the surgery and be DONE with that part of it. I thought I was all healed. This is the first time I've had this kind of pain and I'm worried. I'm calling the BS on Monday. Maybe it's not even cords- maybe it's something else - I keep getting myself worked up. Can we not ever get a break from it all?
I thought I'd be done with chemo and be happy. But instead, I find myself questioning everything and feeling like I'm going to be doing BC forever.............
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lady and omaz thanks, I'll ask about the taxotere. I'm not sure how they decide on one vs the other.
liz thanks for your response, it helped me feel better:-)
Carolyn
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Hi gals! Hope everyone is having a good Saturday.
calamtykel I have a vague memory that Wherria has also mentioned having cording. I haven't seen her post on here lately but maybe you could send her a PM and ask about it. She might have some good tips on management. I'm glad you got the payment issue sorted out with your hospital. And your gingerbread houses sound like fun!
ckptry I'm sorry to hear you are having problems with neuropathy, hopefully this week break will help. Having to choose between ending early and continuing with the risk of neuropathy seems like a hard decision and I hate that you and Omaz are having to consider that.
LadyinBama I presume you are watching Auburn romp all over South Carolina right now! I am eagerly awaiting the start of FSU's game tonight!
Lizzy That episode of The Office is hilarious. I think my favorite scene ever in The Office is actually at the beginning of that episode (it is a 2-parter episode so I mean the beginning of the first part). Dwight fakes a fire in the office and blocks all the escape routes so everyone freaks out. The part that always makes me laugh the hardest is when Angela opens up a file cabinet to reveal a cat inside and then she throws the cat up into the ceiling tiles so it can escape. Of course the cat falls right back down and runs off with a loud meow. Such a funny show!
I am doing ok today. Yesterday I had my first Abraxane and thankfully no allergic reaction. Yay! My onc says that so far all of the clinical trials are showing it to be equivalent to Taxol and Taxotere and he thinks once all the trials are finished and it gets FDA approval for earlier stage cancer it will become the standard of care and replace Taxol & Taxotere. The potential for allergic reaction is much lower and the SEs are supposed to be better too. I didn't even have to get steroids! All I got for pre-meds was some Zofran and so far I have not needed to take any additional anti-nausea meds (knock on wood). I'm a little achy today but some tylenol and a nap helped. I am still not sure yet if my insurance company is going to have a problem covering the Abraxane but my onc said that if they do he will write a letter explaining my allergic reaction and that he felt Abraxane was the only safe option for me. Hopefully that will be enough for them to cover it.
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jsw19 - So glad that the Abraxane infusion went well. Please let us know how your s/e's are as you go forward. I'm really curious about it. If, as your dr. said, it is going to be the new standard of care.
ckptry - I don't know how they make that decision about taxol vs. taxotere either. I do know that my onc recommended the taxotere specifically because the risks of neuropathy were lower than the taxol. I have diabetes and neuropathy can be a complication of the diabetes. I have experienced some neuopathy, but it didn't start until the 3rd tx (of 6), and it has been fairly mild and has responded well to the Gabapentin (Neurontin) and L-Glutamine that they gave me. You might ask about those drugs to help ease the symptoms as well.
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JSW: You got that right. War Eagle! We are headed to the championship. Good luck to the Seminoles. I like Jimbo Fisher.
Omaz: Don't feel like a wimp. I had few side effects, but it wasn't because I'm tough or not a wimp - it's just because that's how my body reacted. Nothing we can do about that. You just take the drugs and stand back and see what they do to you!
Carolyn: I told my onc I didn't want to do Taxotere because of the (very) small risk of permanent hair loss. He said, ok, we'll do Taxol, but it has a high risk for neuropathy. So I decided I'd rather be bald than numb, so I changed my mind and we did taxotere. My point is, he was ok with either drug; so I would think you'd have that choice also.
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I just ordered 2 tankini from lands'end, they have some really good prices. You have to look under their overstocked. We do a pool party with our big bunch of 8 kids + 6 spouses + 14 grandkids. Yes party room and pool makes for great x-mas. I didn't have a mastectomy suit yet because when I was looking before I only saw spendy ones. Today I hit the swimsuit jockpot.
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Hi everybody,
I have been off BCO since about Thanksgiving I think. The neuropathy has really got me down. When the Doc stopped my chemo she knew what she was doing. My feet remain numb and my hands are more numb than before. I am left handed and my pinkie and ring finger hurt going up my arm toward my elbo if I use them more than a little bit.
I also became breathless, barely making it to the bathroom feeling all light headed. My taste has been so gone that I lost 17 pounds in just a few weeks, The Doc ordered a new Mugga scan and lab work. I am very fortunate, my labs are essentially normal. I am told that the 4 AC and 2 Taxol have just knocked me out. They said some people handle chemo pretty well but not me. I am just all dragged out.
Now it has been 4 weeks since my last chemo and my taste is a little improved and my breathing isn't so desperate. I still get breathless but not nearly as bad as just 4 days ago. I still don't understand why I get breathless though? Just because my body is so tired.
I was told not to begin rads until after the new year, to get healthier first. I am okay with that for sure.
I am trying to read through but am only to page 112 so far. I thought I had better post or I would never get caught up!
I have missed you all and hope everyone is doing well, getting over SE, finding their MOJO if it is lost. WHat is a MOJO anyways? Did I have one? Hm?
My sense of humor is returning just a little bit, that is a very good sign for me. . My husband put up our tree, the branches arenbt fluffed out but I have colored lights three feet away from me and that makes me very happy. May be we will have ornaments too..............
I have shopped on line for most things, everything actually. The UPS truck actually came at 9:45 PM. I was so glad my husband was home because No ONe Ever comes up our drive at night. We cant be seen from the road at all. UPS must have a lot of deleiveries to be out so late out in the area we are in.
I need to stop tingly fingers are hurting now.
Laters, I love you all!!!!
GInger
PS This tingling hurts, it isn't a good feeling at all. It feels like itching sometimes and sort of like burning others. My feet are just numb, my hands are doing the tingle thing anbd I want it to go away! Thanks for letting me vent here. I would not have thought this could possibly be progressing four weeks after my last TAxol.
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GINGERBREW - so sorry you have been experiencing such bad SE's. I hope the neuropathy is not permanent. What chemo will you be on in Jan? I could not tolerate taxol and taxotere has been worse than AC for me in regards to SE's but nothing as bad as what you have described. My last is scheduled for Dec. 23 so I told everyone we would not be doing a xmas dinner cuz everything will taste like shite for at least a week so we can do a dinner for new years. i can tolerate mint or lemon tea and yoplait lite. everything else tastes like it has bug spray in it.
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