August 2011 chemo, anyone w/ me?!
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Well, dang it all! I have a massage today and I was going to tell her to go deeper because I'm not neutropenic, anymore.I read through some of the articles, but I didn't catch how it is that deep massage causes lymphedema? In my case, I have to say that I think the benefits of deep massage may out way the risks. I hope. I am very prone to holding tension in my back and neck. Something that has been bothering me, though, is what I am guessing is neuropathy - I notice it especially if I am holding the phone to my ear during lengthy conversations. My right arm will get uncomfortable : tingly, burny feeling. Anyone else having something like this? There has never been swelling, so I don't think it's lyphedema?
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Hi Ellen, I only have neuropathy in my hands and feet. Hopefully someone else will be able to repond about your arm. From what I've read you really don't want to risk LE though.
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OK. Back to work after 3rd of 4th TC chemotherapy. I s/w my Oncologist re: Rads. He said I will be on a 5 week regimen. That will start 3 weeks after my last chemo on 10/27. Has anyone else have there Rad schedule mapped out? Just curious.
Thanks - Missey 29
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Missey, I have my simulation and CT scan on the 20th, but I didn't catch the actual start date. End date will be either 12/16 or 12/23. MERRY CHRISTMAS!
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My massage was great - I came very close to falling asleep! We talked over the lymphadema, and she used light touch on right side. I hope to get my radiation plan on monday w/ last chemo.
Robyn- So, do we get CT scans before radiation? That is on my list of questions for monday. You and I should be starting around the same time!
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They said that the CT was so they could properly aim the radiation. My surgeon left titanium clips - markers - where my tumor was, not sure if that's something that happens for everybody or not, but the CT is to locate them so they can map the radiation.
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I have titanium clips in too, marking where the tumor was, so that's why he left them there, I had wondered. I will start Rads sometime after chemo ends, at the end of November, but I don't know the time frame exactly yet. Still have to get thru 3 more txs first, ugh!!
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Mary, radiation -- especially to the axilla and supraclavicular area -- raises the risk of lymphedema because it can destroy lymph nodes and create fibrosis that further blocks lymph flow. Recent research indicates a rise in truncal lymphedema (swelling of the breast/chest, back or side) since the development of the SLN + rads procedure, probably because the sentinel node procedure targets the nodes that drain the breast area specifically, and the rads further damage the remaining nodes and lymph vessels.
Lymphedema is nasty, but it's not even in the same class as a bc recurrence, so treating the bc aggressively should be our primary concern. But beyond that, it's well worth the effort to find out how best to lower our risk. Best of all is checking in with a well-trained lymphedema therapist to learn all you can about the simple life-style changes that can help protect you.
vtEllen, that burning/tingling can certainly be neuropathy, but it can also be an early sign of lymphedema. Before any swelling is visible or measurable, there can be 30% more fluid in your tissues than is normal -- in other words, lymphedema is already present. It is called Stage 0 or pre-clinical lymphedema. Most times this results in feelings of tingling, aching, heaviness -- or just "feeling funny." If lymphedema is treated at that stage recent studies show it does not progress. (Treatment at that stage is usually a couple of weeks of well-fitted compression garments, then using those garments only for exercise, travel, or any time those feelings return).
Nobody told me I was at risk. I wish they'd given me the real facts, so I'd have had the chance to choose for myself what risks I was willing to take. Wishing you all a quick recovery and no "swell" days ever!
Hugs,
Binney -
Binney - Thanks for the excellent heads up. I will ask onco about lymphadema therapists in the area.
Robyn and Grimbol- Umm, how do you know that you have markers? No one has said anything to me about this?! Can you see/ feel them? Do they just stay in there forever? It certainly sounds reasonable, but this is the first I've heard of them..... Now, you've got me wondering!
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You can't see them. Mine was put in during the origianl biopsy to mark where they'd taken the sample and then left in by the surgeon, or replaced during surgery. It was my DH that told me I still had them/it, don't know how many actually. It makes sense it would still be there for rad, to mark the site.
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Day 4 post Taxol #1. Had some body aches last night but nothing too severe. My legs are a bit numb and tingly today which is kind of odd. So far no nausea which is great!
Chrys, I think your doctor made the right decision. So now, it's on to rads for you! It will be all over soon.
This morning my daughter and I went to the funeral of an 11 year old boy from our church who died earlier this week of a brain tumour. He was such a fighter. When he was diagnosed 3 years ago, they gave him 6 months and he lasted 3 years doing very well until the last few months. It was so sad, though. My daughter sang with him in the youth choir at our church. I have to admit, she held up better during the funeral than I did! Cancer really sucks, especially when it takes someone so young! We need a cure!
Missey, the radiation oncologist told me to make an appointment with him for two weeks after my last chemo and then they'll map out the schedule. I know it will be 30 treatments but don't know yet when I'll start, probably mid-December as I'm done chemo on November 15 provided everything goes to plan!!!
Ellen, no-one said anything to me about markers either so I'm thinking I don't have any.
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The first clip I had was placed during my biopsy, but I'm not sure if I still have that one? The RO had me ask the surgeon and she told me that I have five marking the spot the tumor was in. I wouldn't have known without asking! They said that they could (should?) stay there forever and not cause any problems!
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this is day 5 of TCH tx #4. i'm doing fine and not complaining, BUT i just need some insight. i'm so damned tired, exhausted, and weak. my legs are wobbly when i get out of bed and all i can do is sleep. this is the first time i've felt this way. is it just the cumulative part of chemo? how long has it lasted for others of you, if you've had it? i think i might get bed sores!
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Hello everyone. I had to see my onc today for fever and cough. Fever got to 100.9. Really weak and tired. So got labs done, chest xray, and saw the nurse practitioner. She ordered a liter of fluid. Very dehydrated.
Feel better now, with the liter of fluid. Potassium was low too. Hgl better 8.4.
Hope you all are doing well. Ellen that massage must have felt nice.
Hugs jennifer -
cupcakies -you sd you had your 1st Taxol on Wed -how are you doing? I started to get a little achy tonight especially in stomach/pelvic area? the skin on my fingertips also feels so tight and irratated?
Jmull -my kids are 12,9,5&4 --my daughter, the oldest has been great -helps out a lot and doesnt seem scared --my boys on the other hand are real worried, especially the 9 yr old --they don't like when I am laying around all day or when they walk in on me w/o anything on my head (which by the way, I too have whisps and my brows and eyelashes have thinned)
my 1st ONC told me my hair wld grow back on the taxol, but he was going to give me x12 --I went w/a dif ONC and I'm getting x4 tx's and she said my hair won't grow back until its over.
I can see both sides of doing radiation before vs after implants, I just don't want my implants to be comprimised -my PS is insistant on doing it b/f -I may have to fight him on this
Hope everyone has a wonderful 3 day weekend!
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YaYa5--Just had 4th tx of TCH today, and I can already feel a difference: more nausea than I've experienced so early (even though they gave me Emend during my tx), and the muscles in my upper legs feel crazy--like I've done 50 squats in a row. I also had a mild reaction to the Carboplatin today which, apparently, is very rare unless you've had 8 or 9 treatments. They stopped the drip, gave me only saline for about 30 minutes, and then restarted at a slower drip. My doctor said only the fatigue should be culmulative, so I wasn't expecting these other SEs. What next, huh? Please keep me updated on how you're feeling.
Serenity and strength to everyone having treatments and dealing with SEs this week!
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debinutah, you've described exactly what i'm feeling ... like i've done 50 squats in a row. or like i've been in the hospital for weeks and am just now getting my strength back. my dr. said the same thing about the cumulative effects ... just fatigue. i haven't had nausea, just a tiny bit of queasiness. i hope you feel better in a few days. keep me posted, ok? i'm thinking that maybe tomorrow i'll be better.
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DebinUtah- Your reaction sounds similar to my fellow T/C patient. She reacted the first 2 times. They gave her a long break like you had the first time, and the second time the drip was very slow and had to be stopped briefly, but after that she was good to go.She was fine w/ the 3rd dose. So, my point being that it is kind of amazing how one's body can adapt! I hope that you have smoother sailing w/ the next dose. I am reading "Anti Cancer". It has changed my whole attitude. It is empowering and just what I needed!
jbagley- sorry to her about your fever! That must have been kind of scary. What caused the fever? Do you have a fever? I am assuming you were low in your blood counts? Glad that you feel better!
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Ellen, actually my counts were ok. Wbc 38 which is critically high but neulasta does that. It wasn't the "neutrrophil fever" that oncs are afraid of. I was dehydrated and have bronchitis. Fever is gone today, but coughing up a lot of phlegm. Thanks for checking on me. They gave me a liter of fluid.
Hugs jennifer -
Feel better Jennifer!!!!
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YaYa5, I'm on day 5 post Taxol #1 and my legs feel like cement blocks! It's weird! I don't feel overly tired but it's an effort to get up and walk around!
Jennifer, hope the fever is under control by now!
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Michelllo13 , thats sounds pretty normal after the taxol, I think its actually from the nuelasta shot more than the chemo, but it will pass mine seems to last till day 7 , hope it gets better soon.
Well I finally bit the bullet and went out last night to my local bar, was a bit anxious at first but have to say everyone was wonderful and made me feel so comfortable , I have a great night and it was lovely to forget about everything for a few hours , have to say after my first beer I even forgot I had my wig on LOL.
having a lovely evening in with my hubbie tonight , chinese food, blazing fire and a movie , "life is good"
!!! hope everyone is doing ok and not dealing with the nasty SE's -
vtEllen--so glad you're getting inspired by the Anti-Cancer book! Me too. I know I probably don't have the discipline to stick with an entire change of lifestyle, but--like you said in an earlier post--adding a little green tea, more fruit, some tumeric and a little dark chocolate to my life should be a piece of cake. The book has also made me think about how I typically deal with stress--I obviously need to "let go and relax" more than I have.I thought I was being strong, being the woman people wanted me to be by taking on so much and being ultra independent. Lots to think about! All I know is I sure as hell don't EVER want to go through this again!
YaYa5--feeling better today--less leg stiffness, just a little nausea. Typical SEs are popping up: sore hands and mouth. Sucking on cold grapes today. VERY unhappy about the 10 lbs I've gained since my surgery in July! Doc says it's probably the steroids, but I'm sure some of it has to do with the fact that I keep thinking I'll feel better if I just eat something else.
Best to all my BC sisters
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DebinUtah,
Do you know any more about this "bad batch" of taxotere in the U.S.?
Eileen
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Well, Eileen/edoyrest- I've been thinking about this. Of the 4 of us taking taxotere, 2 had severe reactions. Robyn has been also having hives throughout treatment, and now I'm starting up w/ weird rashes. But, I feel sicker than a dog on the stuff, had a meltdown last night anticipating my last dose on monday. What someone on here or another post wrote was that the taxotere is being made over seas now, and since it has - there have been a lot more allergic reactions. Or were they talking about taxol? Hmm....
DebinUtah- What do you do for exercise? That is where I am going to concentrate. I already eat tons of garlic, onions, mostly vegetables. I refuse to give up cheese and milk! But, I was going as regularly as I could to yoga before all of this. And, it was very very helpful as a stress reducer. We go to the easy, gentle class. Also, I walk the dogs up the hill every day ( that I can now) for 30 - 45 mins. I am thinking about upping the exercise after treatment finially ends this winter. Guess I'll have to take up snowshoeing and xc skiing!!
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Oh good, bad drugs! Just what we needed! I'm also dreading my last treatment next week, Ellen, but at least it's the last. My hives have just about cleared up! A little itching left in a couple of the worst spots where I scratched the skin off! But not too bad. Today it's the heartburn again. Horrible heartburn...But it's a beautiful day, and I'm going to do my best to go outside and enjoy myself.
And of course, I've got to concentrate on not hurting my husband at this point, because he's being such a jerk he deserves a kick in the pants!
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so what is this ant-cancer book? is that the name? I have friends and relatives who are really into holistic or natural mediine and they have been getting on my back to change the way I eat...have any of you heard that cancer cannot survive in an alkaline environment? They keep telling me to eat akaline foods....and if you look up Taxol -it's alkaline based!
so since Fri night, had a lot of pelvic pain...of course my mind goes wild thinking what it could be..went to the hosp urgent clinic and its a bladder infection -had them b/f, but they never made me feel so horrible! glad I went
Robyn6463- they all need a good swift kick once in a while --now -daily!!!
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Allformy4, yes it's called "Anticancer: A new way of life" by David Servan-Schreiber. It's a very enlightening read! I'll do what I can but I won't give up my mashed potatoes and gravy! It's my favourite comfort food. I'm looking forward to that this afternoon with my Thanksgiving turkey...it's the best part of the meal as far as I'm concerned.
Ellen, I'm with you on the dairy front. I can't give up cheese, milk, etc. I've tried the soy stuff and it just isn't the same. I guess I can try organic and see how that goes!
Deb, I know what you mean about the stress. That's what worries me the most. My job is very stressful and it will be very hard to not get caught up in it all when I go back to work after all this.
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About the "bad batch" of taxotere: my onc actually admitted to me that his clinic (a huge clinic) had dozens of allergic reactions with the last national batch of taxotere. I have no idea where it's being made. I had a scary reaction during my 2nd infusion on the "bad" stuff. By the time I had my 3rd infusion, my clinic had a new batch. I did not have a reaction to the taxotere on infusions 3 and 4. This kind of thing makes me furious! Aren't the regular SEs bad enough on this sh*t? Who's regulating this stuff?! There should be no such things as "bad batches"!
vtEllen--most of my exercise before getting my diagnosis was cycling and weight lifting; now I'm trying to do a little light yoga and just started QiGong. Because I've always exercised and eaten healthy and I have no family history of any kind of cancer, I have such a hard time understanding how this could be happening to me. I know that kind of thinking gets me nowhere, but the week after each infusion, when I'm feeling really weak and emotional, it's all I can think about: how did this happen to me? After all these months, it's still so surreal. I keep thinking, I am NOT this sick person; this is NOT me.
Sorry to be a downer--just the "Day 3 Blues." I'm going to go watch NFL--go Steelers.
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Hey everyone - I can't believe how time just passes so quickly. I haven't been on in a bit
I hope everyone is doing well, but I'll read a bit on how all of you are doing as soon as I'm done...uh, VENTING to my sisters!So...I'm doing pretty well right now. I'm changing from my dose dense AC treatments to platinol & taxotere next week (every 3 weeks). So, I got an extra week to recouperate and I'm pretty darn happy about it. Although, I'm not so pleased that chemo will go through the end of the year. And I'm one of the odd ones, I am not going for surgery until AFTER chemo. So 2012 is going to start off pretty rough and end up awesome!
Anyhow, that's not really what I need to vent about. My birthday is coming up and we had some friends and family over for a pizza & pajama party (I highly suggest it...you're close to your bed and already in jammies if you get tired!). Anyhow, my best friend. BEST FRIEND...got me clothes to be comfy in. Great, huh? Um, the problem is that she got it all at least one size too big. She had to give me a disclaimer when I opened it saying "I wanted you to be comfy, don't mind the size, I figured bigger would be more comfy". Um, but one of them was a cotton dress. Really? I mean, sweats I would understand, but a dress?
I guess I'm just really frustrated because we're already having enough self esteem issues as it is (piled on to any self esteem issues we had prior to the big C), and she thinks I'm that big? Ugh, I feel like I'm a crazed woman, good thing I'm not getting my period b/c it would totally be PMS.
Sigh...thanks for listening. xoxo kick some butt, ladies (like my Steelers are right now!)
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