Chemo June 2010
Comments
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LATTE and KITTYKAT! HIP HIP HOORAY!!!!!!!!
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Ladies, I haven't been on in awhile and there is lots going on here. Glad to hear so many of you have finished chemo and are onto the rad stage. I have one more taxol left. I finish up next Thursday. I am so excited! So far so good.
I do have hair growing back on my head and it definitely a new shade of gray! Someone told me this week I look just like Jamie Lee Curtis. I took it as a compliment and went with it. Hubby would have had a fit if he knew I was parading around the office without a hat but it's all good!
I did have a bizarre airport TSA experience flying this week though. I flew out of Richmond VA and they have the new body scan machine. It picked up an "anommoly" when I went through so they wand scanned me. Turns out it was in my chest area. They of course quized me on what might be there and when I said nothing except my sports bra and my tissue expanders but they are internal. So, off they take me to a private area where I have to run my bare hand along my chest and then they swiped my hands with a cotton cloth with something on it to check for explosives. Really??????? Now keep in mind I travel a LOT for work. 3 weeks a month I am on an airplane when I am not battling this beast and this was a first. I did get teary eyed. I give the TSA agent credit though - she asked me if I was ok and said she was sorry they had to do this extra search. I told her I understood safety but I try so hard to still be normal and at that moment I didn't feel very normal. Next week I am flying to Chicago and I dread the trip through security. It's always something.
Anyway, hope everyone has a good weekend.
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Oh, Grney5600...so sorry that you had to go through that. Here's hoping the the rest of your travels go more smoothly and you don't get the extra pat-downs. And great about your hair. Wish I could say the same. It's two months after my last chmeo and I've got some fuzz but nothing to brag about yet.
Latte... Great News! You must be relieved. And Kittycat and Sherry...NO MORE CHEMO!!! YIPPEE!!! You've each been through so much and have been inspirational in your handling of it all. So happy that you're done and can move on.
D'Mom...Did I read that correctly? You walked the 40, that's f-o-r-t-y, blocks to your rads appointment? Well, Good for you! But it makes me weak just thinking of it. I'm currently pretty sore and tired and can hardly make it 40 feet some days, so 40 blocks sounds like a marathon to me!
JFV and TMarina and Chey...you sound like things are looking up. Hope you're feeling as well as your posts read.
Finished 26 regular rads tx and 2 boosts. 5 more boosts. The lead shield they made for the boosts really has me wonder what this radiation stuff is doing to me. My skin has held up pretty well but some redness, a couple of sores and occasional mild shooting pains in the breast. Next Friday can't some fast enough! I am so over this daily rads part of tx.
The cough and congestion continue and the wasp sting caused enough swelling for the RO to be concerned now about lymphedema, so he is watching it all closely. He's really pretty comprehensive and thorough. I actually think he's better than my MO. Funny how different the docs in my 'team' all are. Got my 7th Herceptin IV on Wednesday. I keep hoping that it's the miracle drug all the docs say it is. Stress echo-cardiogram scheduled for Nov.15 and then I have to talk to GYN about an oophorectomy, Would like to get it all done in 2010 while my deductibles are paid and I'm in the doctor mill. I really want 2011 to be less medically oriented.
Sorry that this post sounds whiny. I think I'm just tired and overwhelmed because our company is going franchise on Monday so I've got all new cards and signs to get printed, notifications to make, websites to change, and 'miles to go before I sleep'. It's just a huge undertaking and a real reminder that the world goes on whether I have cancer or not. Well, la de da!
Hope you all have a good weekend. Bon
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kitty, im thrilled your done, i wish i was,1 more after Monday...
Latte, that is the best news!!!!
dmom, haha what a walk, good for you!!!
grneyd, wow, im so sorry,i teared up just reading that..
love chey
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grneyed- Hi Jackie. I just saw on the evening news that the TSA is going to tighten up things even more. I think some of the other ladies who travel a lot were able to get some kind of letter from their doctor so that you don't have to go through the body searches. I can't imagine that they don't have some kind of exemption for women with tissue expanders! Maybe if you google about it? I'm so sorry you have to be put through this. You have been so brave and optimistic through this ordeal. This is the last thing you need!
Bon- You are SO close! Hang in there! I am trying to walk a LOT, trying to trick the rads fatigue Some days I just get carried away in this great city and keep going! Walking is my favorite, and only exercise. I don't even have a car, love exploring New York even after 26 years. So far I have only had brief waves of fatigue. Finished #9 rads today, only 24 more to go!Have a great weekend everyone. As we are experts in everything scary....let's go out and scare someone for Halloween!
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grneyed - Jackie - I just came back from Hilton Head and asked for the body pat-down both at LGA and Savannah. I showed them my cards indicating that I had a port and an expander. The women were very nice and each just used the back of her hand and asked me which areas were sensitive, so she could avoid them. Maybe talking to them ahead of time would help you.
Have a happy and safe Halloween all....
Liz
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Grney - So sorry you had to go through that. I totally understand about wanting to feel some sort of normal - then to be subjected to all that searching. Hopefully the TSA was somewhat sympathetic.
DMom - you are an inspiration. It's all I can do to walk from my car into the school and down the hall to my office with my painful joints and feet that are numb! I walk like a hunched over duck! I can't wait until I can walk normally again - it's the one exercise that I enjoy.
Chey - you are getting so close to being done with chemo. Are you having rads after? I can't remember.
Bon - you have certainly been through the wringer with all of the "outside" illnesses, stings, circumstances, etc. all while trying to do chemo and radiation. I hope you get a break from all that soon.
Latte - haven't had a chance to research about rads and implants, but I will definitely ask my RO about that when I go Tuesday. I can't explain it, but I feel like I don't want to have my real boobs around anymore, especially since one of them tried to kill me. My onc said that my risk of recurrence was very high with no tx and with tx I have reduced that risk by about 40%. But I would like to reduce that risk by a much higher percent and if a mx or bmx can get me that, I would not hesitate to do that. I discussed this with onc this week, but he said he was not sure that would lessen my risk. I guess I will have this discussion with BS on Monday.
I want to know about the rad "tattoo" some of you have talked about. It sounds a little scary to me. Can you elaborate a little on what that is and what it entails? Please don't make me go to the rads discussion for this answer. I'm very shy and not ready to go there yet.
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Mimi, can I just pop in here with a few suggestions to try?
Until you can get in for an evaluation by a fully-trained lymphedema therapist (which you want to do promptly to avoid further swelling, fibrosis, and high infection risk), do go real easy on your arm. No strain, only gentle stretches. No hot water or ice packs; avoid cuts, scratches, insect bites. Stay VERY WELL hydrated (helps dilute lymph fluid and move it more easily). Stop throughout the day and take several slow, deep abdominal breathes (stimulates the largest lymph vessel in your body). From time to time, raise your arm above your head as far as is comfortable (no pain!) and slowly open and close your fist several times (the muscle movements help move lymph fluid down and back into circulation in your trunk). Keep your arm elevated as much as possible -- on the back of the couch or car seat, on pillows at night. More "what-to-do-until-you-can-get-help" tips here:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting
You're right to be concerned; many of us have had trouble convincing our doctors that prompt evaluation (and if necessary, therapy) is important to the ease of managing and controling lymphedema.
Here's information about how to find a well-trained lymphedema therapist nearly anywhere
:http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Be well!
Binney -
Sherry--the rads tattoos are just tiny little dots the techs use to postion you correctly. They put some ink on your skin and poke you (just barely) with a tiny needle. You feel the little poke, but its not bad at all. The dots are so tiny that sometimes it's hard to even see them. I asked one of the techs how she can find them and she said she has a "trained eye". I have one between my breasts, one above the the left breast (or where it used to be!) and one on each side of my waist. I also have 3 somewhere on my backside from last year! It seems the number you have and where they are placed are different for everyone. There will be some ink markings left on your skin, but that washes off after a few showers. I've heard that you can refuse the tattoos, and they can mark your skin some other way.
Any other rads questions--just ask!! We are here for you!
Tina
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Sherry- Just like Tina said, the tattoos are so tiny I can barely find them. They mark the boundaries so they can line up the radiation field. They line it up visually with red lights before they turn on the radiation. In my case they used a tiny syringe with the teensiest needle to inject a dot of black ink. Have you ever had a TB test where they barely put the needle under the skin? That's what it is like. Even my techs have a hard time finding my tattoos and usually darken them with a Sharpie pen to see them better. After all you have been through, this will be a breeze for you!
Binney4- Thanks for popping in and reminding us about lymphedema. So far I have not had problems. Now that I am in radiation, I am concerned again. Appreciate the tips!
For all of you who think it is amazing that I can walk 40 blocks, I think all of YOU are amazing! Keep in mind that I had CMF chemo which is not nearly as brutal as most of your treatments. You will all get stronger and and more energetic, little steps at a time. Just keep moving in the right direction and think of how far you have come! -
Sherry- I had the same experience with rads tattoo as dmom and tmarinna. I have 6. They felt like little stings and they were done with a small needle during the "set up" appointment. One of mine shows above the neckline of almost any shirt except a high neck athletic T. Another one would show in a lower neckline. But they are the size of freckles and everyone tells me they don't see them unless I point them out.
Sometimes I have to laugh at myself. I spent quite a few days obsessing about these little dots on my chest and how obvious they are to me. Yet, I walk around everyday with a colorful scarf on my head, no eyebrows, scars and a big bump from my port on my upper chest and fake boobs with Frankenstein scars on them. To top it all off people keep telling me how good I look. I think I need to get over myself! LOL
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JFV...Joan, thanks for my laugh of the day! You have retained your sense of humor and that's great! We all need to try to do that. Some days it's easier than others! But glad you're doing so well. Remember Billy Crystal's line, said with the worst Latin accent "Eat iz better to looook goood than to feeeel goood'.
Sherry...I honestly have to struggle to find my little tattoo dots.I must have 8 of them. But they are so tiny and I'm freckled so it's difficult to find them among the other dots. I, too, wasn't thrilled about having tattoos. I'm just not into that and was freaked at first. But the other day I found myself perusing the ads for permanent make-up because I'm thinking about getting eyebrows tattooed on. Now is that hypocritical or what! I did have to get over myself very quickly after that.
Binney4...thank you for the info on lymphedema. I am freaking out over that possibility due to the wasp sting a week ago and my arm is still a bit swollen. My RO is staying on top of it and we are hoping to avoid the problem, but the info is good to have. I swear this will be a life long fear. Another of the gifts that bc keeps on giving...paranoia.
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JFV - i'm laughing, thanks for that reminder!
re rads tattoos - i read on other forums that some places don't tattoo, and instead they use special pens and cover them with tape. but then you aren't allowed to put any lotions etc. on the marks in case they wash off, and you need to be careful in the shower etc. i think i'll get tattoos because it's just easier than trying not to wash off the marks.and i'm pretty freckled anyway, so what's another few "freckles"
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Hi Ladies,
Well I flew for the first time yesterday. Wore my compression sleeve and gauntlet and was totally paranoid the whole time, thank God for anti-depressants. Now I will spend the next several days poking, proding, squeezing and staring at my arm :-) I am terrified of developing lymphedema. Still, I have 2 very long flights at Xmas, so doing a couple 2 hour flights yesterday was definitely a good thing. Plus it made me realize I need to see a lymphedema specialist and have them check the fit of my gauntlet and sleeve, my fitter where I bought them was useless.
Saw the dermatologist this week, showed him these weird pigmentless patches on my arms, esp. around moles. He had a term for it, a something halo, and said it's an immune response, so I'm sure related to chemo or neulasta. Anyone else have them? I didn't think to ask if/when they'll go away, was just relieved I'm not imagining this crap! Chemo, the gift that keeps on giving LOL.
Julia
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Ladies....YOU LOOK MAHVELOUS!!!!!!!!!!!
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Thanks to everyone who responded with ideas for my arm. Tomorrow is a maintenance day so I get to stay in my own city. I made an emergency appt. with my physio in town. Apparently this small town has a lymphedema person but she is on mat leave. New plan of attack is to refuse to see the resident who brushed me off and insist on only seeing the Rad Onc this Wednesday who seems very kind and caring. I will practice my assertive skills and get this evaluated and looked at. All of you are the BEST. I don't think I could do this without you.
Love and Hugs, Mimi
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Hi Julia - I was also just at my dermatologist with the same question. I am always paranoid b/c melanoma runs in my family - not BC ... if figures. She told me the same thing - that it is an immune response probably from the chemo...I also thought I was imagining it.
Mimi - I flew with my sleeve but had it checked out by my PT before I went. She asked me - where is your hand sleeve...I had no idea what she was talking about - just thought I needed it on my arm. I went off to get the hand piece. She also told me to put it on a few hours before my flight and leave it on the day of the flight until I go to bed that night. The woman in the store had told me - just put in on before you get on the plane and take it off after an hour when you land. Glad I checked with the PT - it all went fine for me. I am also taking a long flight on Thanksgiving - out to Phoenix from NY so it is nice to know that all worked well for the shorter flight.
Hugs
Liz
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Thanks for all the responses re the rad tattoos. I have been poked by needles so much the past 6 months, that getting poked again, even if just a tiny stick, does not appeal to me. However, I shall suck it up when the time comes I guess.
I have an appointment with a lymphedema specialist/therapist on the 17th. That was the earliest I could get in. My left arm is now 1 inch bigger than my right arm and the pain I first experienced when I had the AND done has returned although it's only about 60% as bad as it first was. One of my fears has come true - I have chubby arm! I am going Monday to get my sleeve. Thank you BC.
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Sherry, if you have swelling and you haven't seen the lymphedema therapist yet, don't go buy a sleeve and glove now -- it'll be a waste of money. You do the therapy first, and the massage, wrapping and exercises will reduce the size of your arm. THEN you go buy a sleeve and glove or gauntlet to keep it that way. If you get it now it won't fit you after therapy.
Hugs,
Binney -
Hey Bon & Sherry, I got bite by horse fly this summer on my right arm (yes the bad one). I too swelled up. By the next morning I was swollen from knuckle to arm pit. They put me on antibiotics and watched the swelling. I did see a PT and was evaluated for Lyphedema. I have been prescribed a compression sleeve and wear it whenever I fly or I am feeling a bit swollen. The good news is my arm measurements are very close to equal and I am faithful about the excercises they tell me to do. Hang in there! I agree with Binney4 don't get the sleeve and glove until you see the PT. They will work with you on the proper fitting.
On another note, I tried on suits tonight to pack for my trip to Chicago this week. I am so swollen from the steriods I can't get anything buttoned. I refuse to buy new suits so I am going with the ones with the longest jackets so you can't see the waste of my pants is pinned. I HATE this weight gain!!!!!
OK, one more Taxol and I can do it! I can I can I can! There now I feel better.
Hope everyone has a great week! I am going to be doing some serious partying on Friday once the chemo part of this party is over! Hugs all around!
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Hi Ladies ~ Congrats to Kittycat & Sherry (and anyone else that I may have missed) for finishing up with Chemo!!! Doesn't it feel awesome to be done! Cheyanne you are getting sooo close!!! I am now a month out, and the chemo fog is lifting, I'm feeling a bit stronger each day.....then I look around my house and realize how much work I didn't get done while I was such a lump on the couch for months!!! LOL...it actually feels good to tackle the deep cleaning!
I got my tattoos for radiation last Tuesday, I will have my 'dry run' early this week. I made a comment on my FB page about getting my 'first' tattoos ~ OMG the response was too funny...I had to then explain that they were the size of a freckle & for my radiation! Maybe after this is all over, I will consider getting a pink ribbon tattoo (or maybe not).
I, too, am nervous about developing lymph edema. I tend to have a little more swelling in my arm on the mastectomy side, and worry a bit about it. Thanks Binney4 for the info.
DesignerMom ~ I am trying to get some walking in, but 40 blocks!?! Wow!!! I 'graduated' from my Physical Therapy...with the understanding that if I am experiencing a lot of fatigue with the rads, that I can restart anytime within the next month. I loved it!
I don't write often, but I try to keep up with every ones posts....sounds like the mood is a bit more elevated as we get closer to finishing up tx. Has anyone started Tamoxifen yet? I received my prescription, but they told me to wait until I get the 'ok' from my radiation oncologist...I guess some of the docs want to wait until after rads.
Take care everyone....GOD BLESS
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Hi Ladies!
Well I have filled my Tamoxifen prescription, so I guess today I must start taking it, here goes with the next part of this wonderful journey:-) I think I need a haircut, I look like an orang-utan at the moment! Long whispy bits that stand straight up!
Julia
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Hi All!
Hang in there grneyday. You'll be done soon!
I have been on Tamoxifen for a month. So Ocober has been a big one for me, back to work, radiation and Tamoxifen. My side effects right now are fatigue, increased hot flashes and return of pain in my chest and arms on the side with all the lymph nodes out. I can't really blame my SE's on any one thing. So, I guess what I am saying is Tamoxifen has been an OK experience so far.
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hi girls, i need a bit of advice from all of you please, today i did # 11 taxol, YAY!!! but starting to feel the neuropathy, it comes and goes,its not bad but i can tell something is going on. ONC wanted me on weekly taxol because we could keep an it on me, she said dose dense it just hits hard sometimes...my ONC said that if it gets worse i can skip the last taxol, she said 10 or 12 there has never been any studies to show a difference, My second opinion said ( in the beginning) that he wanted to put me on AC x 4 or TC x 4, he said my diagnosis showed no reason for the taxol. what do you think? i dont want to short change myself, but im ready to be done if the neuropathy gets worse..
grneyd, and.... you will, you will, you will! then you will..... be done, be done, be done !!!
jfv, hahaha you are too funny! a least you have two boobs, at the moment i have one,lol
thank you
love to all Chey
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Hi,
I haven't posted here in ages! But, I am feeling faint lately and need to know if it's a side effect from chemo... or if I need to worry...
My head feels like I'm going to faint. And I feel weird pressure in my sinuses. No pain or soreness. It seems to flare up more when I'm active or after sitting for long periods.
Anyone else experience similar???
Thanks
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nannybaby, ive not felt like that, i was on AC and taxol, you r getting hit with both hard stuff! where r u in treatment? do u have allergies? I really think you need to let your ONC know, like tomorrow!! dont take any chances, r u running a fever? keep us posted ok? ill be thinking of you,
love Chey
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nannababy - i haven't had anything like that. but even if it is "just" a chemo SE, i think you should still speak to your onc about it and get it checked out.
chey - i did all 12 taxols - i have minimal feeling in my toes, but I am managing. i decided to do all 12 tx, but everyone is different. I know other people who had to stop tx because they were tripping over all the time (because they couldn't feel their feet) or because they couldn't hold a pen (numb fingers). I'm definitely nowhere that bad. i also noticed that the neuropathy got worse in the two weeks after the last tx, and isn't getting better yet.
two other things i have noticed post-chemo:
1. I'm getting bitten badly by mosquitos - they avoided me when i was on chemo, i guess they decided they didn't need chmo blood. luckily, i'm still pre-surgery, so i don't need to worry about being bitten on my LE arm...
2. I stink!!!! During chemo, I had almost no BO at all, even if i forgot to use a deodorant. Now, I stink something awful, and am still trying to find an effective deodorant that doesn't have alcohol or aluminium... (At least summer is almost over here)
Anyone else have these problems? -
Hi Ladies! I have a rash :-( It is on my chest on the radiated side, I was itchy there yesterday and this morning it is bumpy. I started Tamoxifen yesterday, so the choices are a) delayed radiation reaction, b) tamoxifen reaction, c) unrelated to cancer treatment. Not sure who to call first. med onc, rad onc, dermatologist or PCP :-) I see that rash can be a SE of Tamoxifen :-( I am getting really tired of this crap.
Julia
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nannababy-->you really need to speak with your onc about this. It could be low blood pressure. During AC I had times where I felt faint and nearly passed out. Remember, we are supposed to report ALL side effects!
Chey-->If your neuropathy is mild, I would say do the last tx. That way you'll never wonder if you did everything you could to fight the cancer. The tingling and numbness will get a little worse for a few weeks after tx, but then should start to lessen. If it's bad, it could take a year or longer to completely go away. Mine is bad enough that I know it's not going away anytime soon.
If your neuropathy is really bothering you, then maybe you should skip the last tx, because, as I said, it will get worse before it gets better.
It's really up to you, and how you feel about the neuropathy, and finishing tx! Good luck with your decision!!
Julia--> sorry about the rash. Have you tried benedryl? I always go to my onc with everything, I would call him/her about it.
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Hi Everyone, I haven't been on here in a very long time. I had my last chemo on 9/22 and my exchange/recon surgery last wed. Eye lashes are growing, shadow starting in eyebrow area, and the layer of fuzz on my head is thicker and starting to show color.
Chey: I am posting mostly because of the neuropathy. I was really in a bad mental state the last month of my chemo (4AC/4Taxol) one every other week. I was thinking about not doing the last because of my toes and the numbness/soreness of them. However, I stuck it out and made it through and believe it or not it has improved quite a bit. They told me 6 mo to a year before it is gone but it really has improved. I am back to wearing my pointy toed heels to work today without a problem. By the end of the day I will feel it some I'm sure. I'm not telling you what to do but I know I am glad I pushed on and did all I could, especially since I have triple negative.
It all seems like it went by so fast now that it's over but I know it was a long, long summer in reality. For all of you still going through chemo I wish you the best and continued strength to get through it without any side effects. Just know that it will be over eventually and that you will move past it all.
It was hard for me when I finished and then I still looked so weird, I wanted chemo to be done and me to be normal again. But, I have to wait out the hair growth like everyone else. The mental part is the hardest for me, especially being alone. I have to wait at least a year before anyone would even want to date me. But then again, I probably need the year to get my head right.
A big giant hug to all of you. I wish you the best.
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