February 2012 Chemo
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HI everyone - I haven't posted much as I am slowly getting my eneergy back from the hives incident this past weekend. the initial thought from the ER was that it was a SE from the Taxotere but it seems that is not the case. My ONC returned yesterday and told me that it is a very rare SE from Neulesta. Amazing - I hate that damn shot. In addition to all the bone pain it has been giving me it has also been slowly releasing an allergic reaction thru my system. So here I am on steroids but fortunately the hives are gone ......Yipee!!!!
However since I seem to get strong SEs my Onc and I have decided to forgo the Nulesta shot for my treatment next Thursday. Sicne it will be my last TX she thinks I will be ok as the Nuleasta should have been building up my WBC from the previous 3 TX.
So what I am looking for is suggestions on how to get thru the first 10 days following TX without the shot. I am so close to finishing this phase of my treatment that I don't want any hiccups. I know that there are a few of us who either have not had any Nulesta or only had a half dose. Any tips on what to avoid and what I should do is greatly appreciated. I will be flying on the 11 day following treatment but I plan on wearing a mask on the plane and that should cover me then.
(((HUGS))) to all........so glad we are all getting towards the end of this chemo journey.
For those of you doing rads after this like myself, shall we stay on this topic together or start a rads one??
I also want to say before I forget, I Thank God everyday that he gave me such a wonderful support group here to get thru my chemo with. It has been such an enormous help having all of you to vent and whine and celebrate all the little victories we have had.
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FYI- I know some of us are worried about losing our jobs. I too am since my husband is self-employed and I ensure my family. That is my biggest worry, losing health insurance. If you have been at your current place of employment for the last 12 months you can apply for FMLA. There are two types- one where you can take off up to three months in one shot or intermittant FMLA. That is what I took, With that I can take off those 3 months when needed within a 6 month period. I can use it if I'm not feeling well, doctor appointments,etc. Your company will not pay you for these days but you can use any time you aquired, such as vacation days, sick days. The good thing is your insurance stays in place and your job is safe. I know there are some restrictions, such as if your company employs less than 50 people they do not have to offer FMLA. If you google FMLA you can get more info. keep in mind that if you are planning future surgeries you may want to hold off on applying.
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FMLA is wonderful-just has lots of paperwork! i had to use it when hubby was very very sick in 2005
ok- tuesday i shadowed on "the job" --loved it !!! still waiting for "the offer" --last i heard was that she would talk to HR to see when they want to put me on etc...so i wait! and we already know how i am not a patient person!!!!! i truly WANT the job as well as NEED it....
meantime- today was surgeon appt and tomorrow 7 AM pre admit testing for my surgery monday- yes- quick! but i chose that instead of on the 30th....figure this way-since i haven't started working yet- A) i'm already off (B) why put it off waiting for something that hasn't happened (the offer) and C) Medicaid cannot possibly try to make the job pay since i am not on payroll-
i'm having LX and ancillary lymph nodes -will stay overnite---
so i have a question for anyone who has had lumpectomy-----will i be able to lift my arm enuff to put on a tshirt or should i take a button down to hospital? maybe i'll have to borrow something from hubby cuz i think everything i own goes over my head! even a tank top...
it is beautiful out today...sure wish i had a porch! oh-ok- won't start that whine again!
somebody asked about whether or not we should post here or on rads board or whatever after chemo--i personally would like to stay in touch thru this board however i will also go to a later date chemo (april/may i guess) and eventually to a rads board.... i feel a connection to all of you!
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Congrats, Lumpynme, on the job.
I can answer the lumpectomy. I had a benign lump removed in 2005 (yeah, me). Any type of front button, front zip is helpful. In fact, front zip athletic bra is very helpful too. That way you don't have to reach and you can put an ice pack in there if you need it.
Good luck with the surgery. I meet with my oncologist on Monday. Right now she's pushing a lumpectomy but if there's still a tumor in there after the chemo, I say take it all, dangit. Take it all.
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thanks Msbelle and dipad for the info about the PT, I'll see a certified PT next week. I do have a tiny bit of chording and it is good to hear that it can clear up quickly.
gigborn - there is a thread about there about Hair growing back. I would caution you about reading it though, just like everything else it looks like it depends - depends on the treatment and the person. Some are 6+ months out with very short hair and for some it's grows much more quickly. You have to sift through quite a bit to find the fast growing stories and it's hard to tell what's the norm.
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Lumps, hoping you heat about the job quickly. Hope your surgery goes well. Grit, I am with you, take it all. (I had a BMX) worked for me. Faith, hope the cording goes bye bye . And I want you all to keep posting here so we can keep up with everyone, too close not to stay together. I love you all.
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Lumpy
Well you have the proverbial foot in the door now!! Good luck on the surgery too and your're right, the sooner the better. After chemo, you should find surgery a cake walk. At least I found it was. Even after my MX by day 5 I was cooking, light housework, laundry. No cartwheels or anything but you get the drift. Zip ups are easiest but even loose tanks that you can step into and pull up work well too.
gritgirl
I get why you would want to have an MX vs LX then there's no more worry about that one anyway. Personal I'm glad I did it. Not like I had a ton of options mind you but I got over it pretty quick. I was like hey "you're not doing me any favours now are you" be gone!
I would like to stay with the same group as well. Even if I don't end up doing RADS I would still like to keep up with you all and see how your doing. I'm finding alot of suppor here that's hard to find even with my besties to be honest. I was actually having a bit of a downer today. The gals I've grown up with (with the exception of 1) have really not been around. Another friend is having a girly get together tommorow night and its great for me because its literaly a 3 minute walk. We all just bring some munchies and some wine and have a laugh. Usually ends up being about 20 women or so and she does it every year. Even sends the hubby away LOL! So the two that know her aren't coming. One can't be bothered. The other has plans. So I text the first one and say c'mon, come for a couple of hours, I haven't seen you for a couple of months! Doesn't feel like it, but I can come see her anytime. I was so pissed off. I said "you know, during these TX I only have a couple of windows to socialize due to my counts, this is one of them. WHATEVER!" I send an email to the one who has plans to see if she was going. She responds "Oh I've been meaning to ask you how your feeling, how are you?" I responded "Bald, tired, a bit isolated and BLAH! Haven't heard back from her.. I have seen this one 2X since my DX. These girls live in my town!! I would curse a blue streak but won't here. I have lots of other examples but won't get into it. In a crappy mood over this stuff! These are people I have dropped everything for our whole lives. WTF!!
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MLB i understand so well what you are saying about your friends! hang tuff gf!!!! go and enjoy yourself -it will be their loss...........
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So much to catch up on! I had a deadline at work that has made me crazed--just finished it thank goodness.I had TX#2 of Taxol on Monday and the SEs have thus far been much better--the Vit B has really helped with neuropathy, so thanks to GritGirl for the tip. Also, they had me taking Decadron on Tues/Wednesday, and that helped as well with both nausea and bone pain stuff, I think. I still have some of the joint/bone/muscle pain, but nothing awful.I had to laught at myself after reading the posts about not being able to sleep with steroids, I thought, "I never had any trouble during the AC treatments." Then I remembered I took an Ativan for the steroid nights. D'oh! This time, I had a bit of trouble getting to sleep but not too bad.Moonflwer, I have trouble with the cursor, too. I thought it was my browser.Dipad, Yes, Randi used to do karate at my kids' dojo, but switched when the Sensei revamped his curriculum extensively. My daughter adores her and we stop by her store fairly often as a matter of fact. How funny!AEM, I have a couple friends who work at Natick labs! So funny.I'm also looking for a PT to help with range of motion. It used to be fine, and seems to be regressing.Meeting with the RO in a couple weeks--only two more TX to go. Yay!0
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I hope that those of you having rads will stay here. We've been going through this together, and I'd like to know how everyone is doing. I'm not planning on rads, but it could still happen at a later date. I guess I feel that we are a special group here-separated in space, but united in this difficult experience at this point in time.
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Lumpynme - Definitely take a button down (I had to borrow one from my sister). They put me in some type of surgical bra in the hospital and just said to keep it on 24 hours a day. I bought these sport bras made by Vanity Fair in Kohls that close in the back and I have been wearing them ever since.
Gayle
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Mthrdee - I missed your nuelastra question on the first pass. My onc says that the shot is cumulative and slow acting. My counts did agree with that, my counts dropped too low after the first tx but not the others. When they did drop, she had me take an antibiotic for extra protection. Will you get your counts checked in between treatments? Also I would be diligent with taking your temperature, it will be an early sign of any trouble.
Yes, I hope we keep posting after chemo, we are doing things in different orders and still have a lot of support to offer. Like surgeries, lumpynme - I agree button down for coming home, and I had a few on hand. It took me quite awhile to get into t-shirts. I'll be having a bmx June 14th and will lean on all of you who have been through it.
I had tx #6 today!!! Just 2 more, I am so happy the be on downhill side of this. Hope everyone has a healthy week ahead w minimal SES0 -
And lumpynme - my spellcheck keeps removing the 'n' so sorry for any mispellings!
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Faith, I had a BMX. Are you home alone? That was the biggest thing because you can't get out of a chair. Try it by crossing both arms over your chest and see if you can get out of a deep chair or couch. Sometime you can if your tummy muscles and or legs are very strong. My knees are not and I could not. So try it and you will see what you can practice. Also remember you will not be able to pull on anything, and of course that means a reclined handle. Plus you will not be able to use the toilet easily, use a raised seat for a bit. Sorry for the long post. Much love.
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Yay for Lumpy!! I hope things are looking up for you and heading in the right direction.
MLB i love reading your posts they make me giggle. I can hear you in my head cursing up a storm. AND they deserve it. This whole thing did show me who really cares. Those who I thought havent been and those who I didnt even know are the ones so dear.
I will be doing RADS but not until July/Aug. I would love to keep this group because I feel closest to you all. I have a couple of other threads i follow but only this one where I feel a kindred spirit.. does that make any sense? Also, I am a bit behind. I have my surgery in June. We did chemo first then surgery. So I enjoy hearing the stories of those who have been through it because I am terrified of this part of the journey. I feel like there is soooo much I dont know. I have an appt with the BS on Wed so maybe ill feel better then.
Grit I am with you too! I was told i had to have a masectomy but the option of a BMX was my choice.. i said take em both! They gave me a 40-80% chance of it occuring in the other one. Um I dont like those odds. As I get closer I will bug you guys on what I should get to prepare for my surgery.
Thanks everyone for being you!
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OK all - it looks like this group are together for the long haul....so glad I would have missed not having all of you to turn to when things are rough.
Lumpyme - I had a double lumpectomy and I found I absolutely needed a button down for coming home. I went to Walmart the week before the surgery and bought front closure bras with no wires in two sizes bigger then I normally wear. I think they were about $9 each. I wore them day and night for 6 weeks after the surgery. I found it was doable and the pain was tolerable. However here are a couple of tips I used:
Frozen peas and corn - kept them to use over my boobs constantly from the time I got home for about 7 days
Took a pain pill every night to sleep with a benadryl - worked like a charm and I was able to sleep every night without waking
First night I slept on the couch but by the next night I was back in my bed....toughest thing to adjust to was having to sleep on my back.
By day 4 after the surgery I was up and about.
the exercises where you climb the wall with your fingers are really important and help to make sure that nothing freezes up
Do not lift anything heavy and try to move everything in the cuboard down low so you won't have to raise your hands high the first few weeks.
Ok there are my tips for the day - hope it helps
(((HUGS))) and small SE to all
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Reading all the tips for the surgery... does all the same stuff apply to a masectomy as lumpectomy? I am very ignorant on how to get through it the best way possible. I am a wuss when it comes to pain..and the drainage tubes... i feel like im going to look like Ursela from Little Mermaid.
Thanks for all the wonderful advice
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Mx takes a lot of tissue, lx, not so much. I had a BMX, so can't speak to lx. But BMX is tough.
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JenH13
I think pretty much everything applies to a MX as well. I didn't ice at all though. The biggest drag for me was not be able to shower for 5 days. The home nurse that came every 2nd day asked me to wait for day 6 and to jump in the shower about 30 minutes before she got there. That way she could just change the dressing. It was the best shower of my life!! Have alot of baby wipes handy for cleaning yourself, they really do help. I had hair back then so dry shampoo came in handy. I'm not sure what side you're having done but I was lucky it was my left because I'm right handed. As far as the drains, get some big diaper pins so you can pin them to your pants/pj bottoms. With a longer top you don't have to look at them then. If you can find a hoodie or something like that with pockets on the inside, you can always tuck them in there. I also saw suggestions for a fanny pack to tuck them into as well if you have one handy. They are a little bizzare to deal with. I commented to the nurse in the hospital that I now knew what it was like to have testicles.Wherever your sitting, try to have everything handy. Water, kleenex, meds, the remote. Getting up and down constantly can be uncomfortable and stressfull on the sutures. Either prepare and freeze meals or better yet have some family and friends bring some. You are not going to be up to cooking or anything for at least 5 days and above all, take the pain meds!!
If I think of anything else I'll be sure to let you know. I feel like I had everything done in the reverse to most of you and honestly the MX seems like ages ago!!!
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Thank you!! I am having a BMX. I am worried about not doing things for myself. I run run run all the time(not like Firstcall!) just busy with the 2 kids, work and errands. Trying to slow down during chemo has been the hardest thing and something I still havent done well.
How long before you could drive or even dress yourself? I dont think i have any button down shirts hmm sounds like an excuse to go shopping
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I just thought of a couple of tips. Get your self a couple of loose tank style tops with a built in shelf bra, it won't bother the MX side and your other side will get a little support. I found these invaluable because you cannot wear a bra. Although I didn't really have a problem rolling out of bed, some suggest pj bottoms that are silky to help with that. No one talked to me at all about LE. 2 days after the drains came out I was in alot of pain and thought I had pinched a couple of nerves. After they are removed, start elevating that arm with a bunch of pillows ensuring the arm is above your heart whenever your sitting watching TV or whatever. It really helps get the fluid moving and helps avoid LE which can be very painfull and chronic. Ask for instruction on specific exercises to get the fluid moving too. Absolutly no one ever mentioned any of this to me and it was only my chiropractor that did when I went to see him thinking I had pinched nerves.
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Jen
I though you were having a MX, sorry. Definatly get the slidy PJ bottoms for sure then. It will help getting out of bed. I'm sure the other ladies that have had the same will have more advice than I did.
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Thanks MLB! I really do appreciate all the advice. I want to be prepared going into this.
TGIF! Hope everyone getting treatment today has an easy day full of little to no SE!!
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Jen - when is your surgery date? Mine is June 14th. When I was having my lx I was part of a general surgery group and I learned a lot from that thread. Definitely enough to ease my fears a bit. Some people have recommended sleeping in a recliner, I'm not sure what will work best for me. I did get used to sleeping in a pillow pocket in my bed after the lx, but it will be harder to get in and out with both sides impacted. I did have a drain w the lx, as mentioned they are odd and creepy but you get used to it. I've been told it will be about 4 weeks til I can drive, but only because of the strain on the muscles to turn the wheel - you won't be completely down and out all that time.
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Moonflwr - my mom is going to be with me full time for the first week, after that my boyfriend will be with me evening and nights for the next two. Thanks for the tips, I will practice and actually start back with the ab workouts that I used to do. So glad I have all of you!!!!
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I have arthritis in both knees, need replacement. I actually got a lift chair to sleep in because I couldn't depend on my legs to help me up. Abdominal workouts will be a big help to you . By the third week, I was doing much better. Fist two weeks just plain hurt. Take your pills, stay on top of the pain. Much love
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Hi everyone, yes I want to stay on here for surgery and rads. Have seen other threads and quite shocked at the bitching between woman. We are all so nice and I feel happy with sharing problems.
I'm waiting for chemo 5 and had my bloods and just passed the mark. Onco said I could do with another wk off but I need to finish this now. She thinks this may be last one but hopes I can do one more after this.
I'm getting very tired after shopping or light housework so I need to take it easy. They think i will have 15 or19 rads is anyone else having that many?
Don't get me on the subject of friends I'll leave that for another day. I will tell you this, I heard from my long lost mum a few days ago. I told her I had cancer and she didn't seem upset just said " the girl down the road has that and she is ok"
We have never been close the icing on the cake was when she gave me away to a care home then an aunt.
Hope everyone is ok and taking care not to over do things .
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When is the best time to do rads before or after TE exchange? The ps said exchange is done 4-6 weeks after chemo but my onc wants me to see RO after chemo is done.
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Ali- that is so sad. I am sad for her for not knowing such a beautiful woman she has as a daughter. We will be your family across the seas!
faith- I am not sure yet on my date but sometime in June I hope. I have a meeting next Wed with the BS. My last chemo is May 17th. and I know they want to wait at least 3 weeks after chemo but thats all I know so far. I have a meeting with the plastic surgeon the 24th. Since I have to have radiation I am not sure what will happen with the recon. I too have to have 6 weeks of radiation 5 days a week. everyone says chemo is the worst but I am more scared for the rest of it! I have been reading the March surgery thread just to see what to expect. I will have to look for another surgery one but I just like the people here best
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I'll definitely stay here through rads even if it says chemo--seems to me we are kind of a pack at this point.
I had just the one MX, and as far as drains go, it was annoying but not too bad. I snipped an inside pocket from the inside of an old hoodie sweater that somebody had shrunk, and just used that as a pouch, transferring it from shirt to shirt. I liked that better than the belts and stuff you could use, b/c I could then wear my own clothing instead of the more pajama-looking stuff.Regarding a bra--I was sent home with several surgical bras and told I had to wear one at all times until told otherwise, and that was annoying.Mine was a week before Christmas, so I must admit I didn't sit as still as I perhaps could have, but things worked out. I was expecting to be barred from driving for a month, but the PS was so pleased with progress that I got the thumbs up after two weeks, which was a relief.Regarding reconstruction and TE exchanges and so on. My PS told me that I had to wait six months after radiation was through before he did any reconstruction, to give the tissue time to recover. I'm till not sure if I'm going to go for an implant or a DIEP thing, b/c it depends on how the tissue does recover. And I am still considering havig an MX on the other side as well, but my oncologist is discouraging me on this front.0
