Class of 2009 - Sisters in the same time frame
Comments
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Renee, good to hear that your grandmother is doing better. I hope they get her all squared away and she is on the fast path to recovery. I am sorry you are in pain and burnt and the Rad Onc doesn't think it is too bad. He thinks that because he has never had a burnt breast, he would have a different attitude if he was having radiation on his special parts.
Juannelle
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Juanelle you are so right! If the Rad Onc (he's a man) had to have rads to his prostate he definitely would be feeling differently right now. Owweee!!
Pam, how long has it been since you finished rads? 6 months or so? I would think the dark area of skin would have started turning pink again? What did the rad onc say about why it is still dark? I guess I will have to ask mine on Friday. I may not like the answer I get. I like to wear sleeveless tops in the summer sometimes. If it stays black I'm gonna be a little bit ticked off!!!
Renee
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Hi; Right now I'm sitting on hold. My incision won't heal and can't do rads till it does. Incision at 6 0clock plus I'm diabetiic. Surgery was Dec 1. I'm glad to see someone is moving along
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Renee ~ sorry about your burn.
Hope it holds up for your boosts !!! SO glad to hear grandma is doing better. I will keep her in my prayers.Juanelle ~ glad to hear day 1 of rads went well. Hoping the rest go quicker.
Pam ~ sorry about your arimidex swipe ~ would be nice if we were buying new shoes instead of medicine. But, I guess we have to be thankful for the advances with the BC medicines. Hopeful soon it will be an altogether cure so others don't have to go down our path.
Grama ~ wishing you healing on your incision.
Nite all ~
Alicia
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All,
Thinking good healing thoughts for all of you. I have my first visit with the medical oncologist tomorrow. I'm hoping for good news, but prepared for anything. Hopefully this will help to put the game plan into play.
G'nite.
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The area on my chest that was radiated was really large. It went from my sternum across to my side and then up all the way to my neck to get those lymph nodes too. They used a bolus across the chest area to keep the rays closer to the skin surface and that section has stayed burnt looking and you can really see it if I wear a tank top.
That said, we're heading to the Caribbean on Monday to celebrate the closing of "camp cancer". My husband had prostate cancer surgery after I finished radiation. So my plan is to use a lower spf sunscreen on everything around my big burnt area so that it catches up with the coloring to see if I can get more even color. It's weird enough to have people staring at my boob-less chest but then to see them checking out the big burned rectangle on one side is a bit uncomfortable. Sometimes I think, "just ask me....you don't need to stare."
Anyway, we can't wait to get our tootsies in the sand and go swimmin' wit da fishes!
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Renee,
Good morning. To clarify: my radiated side's axilla is not black, just dark tan compared to the other side which is covered up skin color, pale. Not obvious unless you raise both arms and look in the mirror. My radiated breast is normal color now and the nipple is paler than the untreated side. The tan patch on my sternum has faded to normal.
All fine since I have given up my Playboy centerfold career. :-) DH is the only one who gets the full effect. I would not hesitate to wear sleeveless tops if it ever gets warm again. It is a challenge to get untreated axilla shaved as smooth as the hairless pit.
pam
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Loving the rain in Southern California. It brings a peaceful calming to everything.
Ok, I start my Chemo on Feb 1st and get a PICC line placed next week. I am SCARED to say the least. My journey has not been easy, my graf holding up my enhancer was rejected and I was becoming septic, had an emergency removal in the PS office< and it has been 2months since my MX. The Oncologist will not put a port in because he is afraid of more infection and we simpley dont have the time to wait. I should of been on Chemo over a month ago and it has been almost 6months since my diagnosis.
I will be put on 4 treatments of a combination of Adriamycin and Cytoxin followed by 12 weeks of Taxol. The fear of the unknow is just eating away at me. The ladies at my BC support group tell me the Chemo is the easiest part of the process and others state the MX and all the reconstruction is. So, confused and scared.
Can anyone give me the gist of what to expect and maybe some things to have in the house that will help any of the side effects.
Vivian
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Welcome Vivian, to our group...this is a great place to get support, answers and anything else you need...I have a PICC line as well...it is easier than an IV to have installed...it takes some time to set everything up but the actual procedure takes about 7 minutes...They numb your arm so you won't feel a thing.
As for chemo, everyone reacts so different. I had FEC for my first three and it was a walk in the park for me..I was a bit tired for a couple of days a cycle but that was it...they will give you meds for the nausea...so most ladies don't vomit like you think..constipation can be an issue,but most doctors will give you something to cover that if it happens...don't let that happen...eat lots of fiber, drink lost of water, always take your temp. before you take a Tylenol. Never take it if you have a fever, no unprotected sex/body fluid exchanges for 48 hours after chemo....those are the big ones..remember too that we have all gone through this and no question is to embarrassing...we have talked about EVERYTHING here. Take it one day at a time. It really is not as bad as you think it will be. Good luck. We will be with you in spirit on you first day.
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Vivian, fogot to say, rinse your mouth out with club soda after chemo, it helps keep away the mouth sores.
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Pam - Have you noticed an increase in sensitivity when you're out in the sun, or do you take extra precautions ? I plan to go to Florida when I'm through with RADS, just trying to plan ahead.
I had a really good consult with the medical oncologist. She was very personable, and we really clicked. I was hoping for that. The office staff was also nice. She's ordering the oncotype test, and unless something radical happens, I will most likely not have to do chemo, but Tamoxifen (or equivalent) will be in the plans. I left the office feeling really good, hope to keep that feeling for awhile!
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Vivian ~ sorry to see you here. BUT you have found a great support system of terrific women. I could not imagine doing this without these great girls to turn too.
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C2will,
There is a big difference in the intensity of the sun in June through October, much stronger. When I finished rads in late June I noticed I would-could feel faint if I was not careful to be hydrated and wear a hat. I think if you were not accustomed to that heat and sun it might be hard on you. I do not wear sunscreen but was careful to keep my radiated skin covered. Even then, hot sun seemed to make my radiated skin irritated... kind of like prickly heat on a baby.
Winter sun is so much less intense. Still, if you are not used to it, you can get a sunburn, even now, even on cold days if is sunny and bright, and even on overcast days. So count on sunscreen, a hat and a top that covers your chest.
We have not been having the best tourist weather. February can be chilly and grey. By March usually it is nice, although windy. I live in north Florida so it is cooler here, south Florida should be milder. No matter what, it is will be warmer than up north!
pam
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I received my first compression boost today... 9 to go. Let's just say it was very, very unpleasant!!! They put my breast in a waffle type steele vice that had a steel rod going through the top of it and screwed it together until I said I couldn't stand it. It was pretty tight! Then they taped it down from the carbon table I was lying on with masking tape from one side to the top and back over the top and down to the other side of the table. This was to hold the vice in place. They rolled me half way up on my left side and put a wedge unde my right side. Then took x-rays, the other special tech configured the amount of rads. The entire time they were doing this I laid there with the vice on my boobie and my right arm straight up over my head (no positioner this time) once the rads were configured we were off and I got my radiation. In all I had the metal vice on my boobie for 25-30 mins. When they took it off my boobie was in pain. I told the tech it hurt, she said why didn't you say something, I told her I didn't think it was gonna be on there that long and it didn't hurt when it started. Now my boob feels like it is throbbing and bruised. I wasn't very happy.
I also told her that saving a bad boobie wasn't worth all of this to me... Wish I had got the MX.
Let me go a step further and say this to Juanelle and others that may be going through rads. It is doable and if you happen to live in a wonderful area/state that has great docs and state of the art equipment, then you don't have to have the pleasure of medevial torture devices like I do here in Podunk, Alabama. LOL!!!
Renee
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OMIGOSH, Renee!
That sounds terrible! I have never heard of anything like that. You poor thing. I thought rads were terrible and stressful and uncomfortable and I had nothing like what you have described. It sounds like some kind of medieval torture device. Is this standard stuff?
I am so sorry you are having to do this. How many more?
pam
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Ladies I finished building my arc this week and sandbagging has become my new pastime! I have a run off from a lake above me so the waterfall that forms is so beautiful and the creek is roaring it brings peace and beauty. I'm on hold because roads closed coming off mountain and electricity is sporadic so sorry I haven't commented on all that has been going on with everyone.
Renee continued prayers for your Grandmother. I am in awe that you work with all that you have gone through and are still going through, you are a hero in my eyes!
Mary I'm dancing the "Happy Dance" for you and everyone who had good outcomes from Onc visits.
Painting, oh I had that thought cross my mind, saw a cornflower blue in a doctors office and said oh so calming, and then said, am I crazy! Doctors have put a Cancer Social Worker on board to help plan with daughters etc. So things have been worked out. I'm glad I slowed things down. We talked about those 90 visits which some of you have spoken about and they said that's what I'm looking at.
I don't know about this, but I take Lyrica it helps nerve pain, without druggy effect, wondering if this would help some of you suffering with pain? Also I have that pain along outside of leg from hip down to knee. I saw on Dr. Oz that if you take a foam core then you lie on your side and make it move up and down will stretch the tendons and ease pain. I tried it and it worked, first time in a long time that I was able to sleep without being awakened by that pain.
Well wishes for everyone.
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Renee - the compression boost sounds terrible. Forgive me for being naive but I'm still in the midst of chemo and haven't moved on to radiation yet (that's in March). Does everyone get compression boosts? My radiation oncologist did mention I'd be getting some boosts due to my age but he didn't elaborate. Now I'm wondering if that's what I'll be getting.
Sherri
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Edited to redact a post with personal information.
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Sherri, the boosts that I got were just angled differently. Regular txs were from 2 different angles. and for the boosts I was placed in the same exact position as the regular txs, but had an extra angle (almost directly above me) added. All 3 of the boost angles were a little shorter in length also.
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Hi Vivian: Sorry you have to be here but since you do -- welcome
I see you are HER2+ -- are they not also going to give you Herceptin? (I started Herceptin every three weeks when I started Taxol).
AC makes your hair fall out (usually soon after your second dose). I had my hair cut short just before my second treatment, to avoid having clumps of very long hair falling out (and I was glad I did that, as losing the buzz cut hair was hard enough). I found that the steroids and anti-nausea drugs they give these days were extremely helpful; I was rarely nauseated and only mild so when I was (and a pill took care of that). Did not vomit at all. Did grow more sensitive to the sun (and I spend hardly any time out there). Did also have to be careful of germs and watch out for fevers. Taxol gave me bone pain in my lower legs and feet (not pleasant); it was bearable but am glad it's over. Cumulatively, I found I got very tired toward the end.
Biotene mouth wash is also good for the dry mouth you get. Eyedrops for dry eyes. Lots of body lotion (I got dry skin). I also had diarrhea (almost daily) and found that eating a banana a day really helped.
It's scary but the reality is nowhere near as bad as the fear. Even losing my hair did not turn out to be the end of the world I thought it would be. It grows back
Hope this helps.
Lilah
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Renee- I am so sorry to hear what you had to go thru! It sounds absolutely aweful! I hope you get thru the rest of your treatments quickly and with minimal pain. Take care!
Vivian- Welcome to our group! I am sorry you have to be here, but you will find loads of support from everyone on here.
Alicia-How are you doing these days?
Juannelle-How are your rads going? Hope you are doing well.
To the rest of you wonderful ladies-wishing you all a wonderful, restful weekend
Hugs
Jen
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michealboots...thanks for the info everything is helping. I am trying to gather as much stuff to have in the house just to be ready for anything. Glad to hear that the PICC line isnt that bad to get in, all I heard was it is like an I.V but about 40 cm long. After that I tuned out. I was saying to myself, why would you tell me that. But, your words eased my mind.
JustmeAlicia...thanks for the support. Will keep the spirits high.
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Lilah,
Thanks for the info. My oncologist didnt mention the Herceptin maybe he is waiting to surprise me...lol.
All the honest info I get from here is really helping me to understand at a different level and to be prepared verses jumping in blind.
Vivian.
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Hi Everyone
I am just wondering if there is anyone else out there with the same dx,i have a rare and aggressive bc,I am a stage11,2/15 nodes positive and estrogen-/prog + /her2+ ,grade3 .It is great hearing about everyones experience,it helps.Thank-you.
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Jen... I am feeling just "ok". Fatigue is pretty annoying. And I really want my hair and my stamina back ~ I have chemo #7 Monday ~ I am sick of feeling sick !!!!!!!!!!! BUT after this one it is just one more. So I will keep on keepin' on.
Vivian... Hang in there !!! And being prepared form the information here really is a godsend. I couldn't imagine going into my bilateral mx and chemo without all the info I gained here with this great bunch of girls. We are here for you and you will get through THIS !
Hoping everyone is good and has a great weekend!
Alicia
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Sherri- my Rad Onc uses the plates for the compression boosts and I think there are some places that use plastic plates or suction type devices, others may not use anything. The reason my Rad Onc gave me for using the plates for the compression boosts is to get the breast tissue off the the chest wall and only give rads to the breast tissue (specifically the tumor bed) and no other fields. The purpose of the other boost is to radiate only the incision site so that if any cancer cells were in the skin tissue area when the tumor was being removed the radiation will get all of those as well.
Hope that helps to explain my Rad Onc's theroy.
Renee
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Alicia
I just got my hair cut the other day to short layers. I have had long hair all my life and have a hard time imagining Viv without her long brown hair. But, a really good friend of mine told me: "Change your state of mind and the world will turn for you." I keep telling myself that and it helpd some of the time but somedays its just not enough.
Did you wait until your hair feel out of did you take control of that part and buzz it off before it started to fall out?
Anybody else, also have Diabetes type 1 and go through Chemo?
Vivian
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alicia, #7 coming up, you are almost there, just 2 more and you are through. You will make it and you will be so glad that you did. I know I only had half of the tx you are, but I am feeling so much better. I am not nearly as fatigued as I was. Now that I have started rads, I am sure that I will be fatigued again in a couple of weeks. I hope you have a restful weekend before your tx.
Renee, you are almost finished and I know how happy you will be. Sorry to hear that they are so painful now. Makes me really glad that my cancer was not close to my chest wall.
jen, I have had 3 rads and so far so good. I think it is too early for anything to be happening. How are you doing these days?
Sherri, not everyone gets compression boosts. I think mine will be just the same as I get now, except they will be pointed at the tumor site.
It is amazing how short the rad treatments are. I get three beams two from the left and one from the right. It seems to take a while to get me set up, but once that is done, the tx is really quick. I was there 15 minutes from start to finish today.
I hope everyone gets to rest up this weekend. Wishing everyone mild SEs for those that had a tx this week.
Juannelle
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Vivian ~ I had hair almost to my shoulders all pretty much one length. I cut it into a spikey boy cut to lessen the blow, then once it starting itching and falling out I buzzed it off. The anticipation is bad but once it happens it is another hurdle jumped. BUT ~ now after 3 months with no hair and more to come I've had enough !!
Juanelle ~ thanks for the pep talk. Hoping radiation isn't too hard on you.
Renee ~ hope your boobie is feeling okay from the rads and the mashing you got yesterday.
Hugs girls.
Alicia
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Thanks Alicia! My boobie is a little better today, still bruised and sore with several small, raw, open areas underneath and quite red since the rads is only being delivered directly to the breast tissue now. But it was a little less painful today because I wasn't compressed as long as yesterday. Today's treatment probably took 10 mins or so to set up and get done.
Juanelle - Glad to hear things are going well for you. From what you said about the direction of your beams your facility must have a different, more state of the art machine that the one we have here in Podunk (Cullman), Alabama. We are a small rural community. Larger than a lot of cities, but not as large as Huntsville or Birmingham or Tuscalossa (all in Alabama). LOL!!
Renee
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