October 2010 rads
Comments
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Hi Betsy
I thought I may find you on these boards.
OMG I'm so sorry about whats happening to you.That blows my mind.Does Tito know about all this yet. You know the hospital is going to deny you got that from anywhere in the place. Boy you have not had it easy through all of this. I have been fortunate so far to not have any real complications yet. I did have my wbc counts bottomout after my first chemo and did have a cyst under my arm aspirated but after that and the Neulasta shots its been fine. Who is the onco doc you had to call while yours was out.?
My onco Dr. Hochstin is still out and nobody has any answers for me. That seems strange.I am a little disappointed with the hospital especially now after seeing what you are going through.
Do you do your rads the sametime everydayI'd like to pop in to say hi next time I'm at the hospital. I had chemo a week ago so it will be another week and hopefully you will feel better by then.
I will keep you in my prayers and thoughts to heal soon.
Pink Hugs
Vickie
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QCA - I have ink and Tegaderm patches (which they call stickers), no tattoos. I was told to shower normally. I was told that the techs will (and they have) redo the marks and replace stickers as necessary. They do one or two every week. It's the lotion that loosens the stickers, not water. The lotions have an ingredient that acts like a solvent on the adhesive; so I try to lotion around the patches, not touching them; the aloe doesn't bother them.
You can tell your techs that you did some research (here!) and learned that across the country it is the techs' responsibility to keep the marks and the stickers in good condition. You are the paying customer and they need to do a better job.
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Sorry to hear so many are having problems with their techs and rad clinics! We have a separate waiting area from the main waiting area that is for women only. It has a cabinet with gowns, 3 changing rooms, a bathroom, and lockers to put our stuff in. I put my gown on with the opening in the back so when I get to the rad table I just have to slip my left arm out and only my left side is exposed. All my techs are female, and the rad room is just a few steps from the women's waiting room. The techs are all wonderful, and the nurse is always available for advice or a hug, if needed. I just wish everyone could have a great place like this to go!
Keep speaking up, and standing up for yourselves! Or bring a loudmouthed friend/relative with! WE are the ones with cancer; we deserve to be treated with compassion, respect, and dignity!
Praying for you all today!
Tina
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TMarina, I agree. First of all, these clinics are getting huge $$ for these treatments. In many ways, we are doing them just as big a favor as they are us. I could have chosen another treatment center. I might have, had they been forthright about one of their machines being broken. I routinely wait 1/2 hour to get my appointment. Every day, it wears on me. But...I've chosen to not focus on that, it's 6 weeks, not the rest of my life. In any case, we all have choices where we get treated. It is not right to put up with stupid comments, bad service, etc!
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On my way to my last rad tx now...7 more Herceptins (last one March 16) to go, and 4 more years of Arimidex after that. Yippee!!
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Congrats on being done with rads Marmalade!!
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Hi Vickie...
How are you doing? I got the lab results and it is not mrsr! Yeah! Just a bad staph infection. I was so worried about infecting someone else with it or my kids. I wish the er doc had not said anything about mersr. So it should clear up in about a week with the antibiotics and they said i could go back to work next week. I think Dr.White was the onco i spoke to over the weekend. Went to my pcp for the meds and i have'nt been there since my dx and they were all over me like white on rice (Dr.Grace). People with cancer don't go there very often i guess. I start pt tommorow at cordage park for the lympedia, just one more appt to go to. My rads appt is at 2:20 everyday so if you are there come on down i'll be the one with my head covered and a johnny on lol. How was the pink pj party? A girl that has rads right before me said she had a blast. I now wish i had gone but you know teenage boy's just not comfy leaving them alone all night. The whole town of Plymouth would have been at my house for a party. Hope you are well!
xoxo
Betsy
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Betsy-so sorry to hear about your infection. MRSA is usually picked up in a health care setting but now there is also a community acquired MRSA. Hopefully you will be feeling better quickly. I picked up an infection when I had my port put in and it really flared up after 1st chemo and calmed down with IV ABs, but by second round opened up with yucky green drainage. This has been quite an adventure hasn't it? Have you had your WBC drawn. I bottomed out w every chemo, so they are checking them everyweek. It was heading down last week, after 6th tx.
Joan 888-I wish I had not gone for final expansion-I too was running out of time and delayed RT for a week to get the final one in. Am overexpanded and it has made RT really uncomf. Feels like I get expanded more with RT and swelling-get the muscle spasm and back pain and is really tight, but I found that no tx on the weekends really helped and a lot of the swelling went down by Monday. I don't plan on being this side after surg, but couldn't talk PS out of final expansion.
I wish none of us had to go through this. So sorry to hear that many of you are dealing with insensitive techs. I have to say that I am grateful for my facility. They have been on time, work as hard as they can to keep you covered and have been terrific. I can't say the same for the OT working w lymphedema. Took 2 weeks to get in for a consult, then they couldn't get me a daily schedule until this week and just when I was going to start w daily wrapping, they cancelled a couple of appts or when I went in had new OT unexpectedly. I did have a little meltdown at them just because no one even took the time to tell me they were changing my appt and substituting someone else because my OT needed to see that person instead. Someone said there is a light at the end of this tunnel. That is what is keeping me going-shd be done by 1st week of dec. You are all so right. We do need to be our own advocate and we shd expect good care. I think at this point we are tired of being a patient. So much hits you right after the dx and it feels like we get on a treadmill. This board has made such a difference-knowing you are all there and you do truly understand.
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Hi, my name is Rachel and I was diagnosed in May with IDC stage 2, grade 3, 7/23 nodes ER+/PR+, HER2- I'm on day 11 of rads and really starting to feel it. My breast feels swollen and my nipple hurts. Last week I had to have an ultra sound on my nipple because I could feel lumps. The rad. onc. freaked me out when I showed him. He immediately said the lumps were worrisome. When I told him I was scared, he said he'd be scared if he were me. The ultra sound showed simple cysts perhaps due to fluid backing up from the lymph node dissection or from the radioactive trace the put into the nipple when the did the sentinal node dissection. Anyway, that was a day from hell. I'm also looking for node positive women who might want to be email pals. I live in a remote area of the Rocky Mtns. In fact, it is a six hour drive, round trip, for rad. treatment and I have to do 34.
Glad I found this board. TIA. Rachel
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Thank goodness Betsy!
My appts seem to always be in the morning but who knows after my next one.I'll be sure and look for you. The PJ party was really great. They will be having others they said. I pretty much just relaxed went in the hot tub and had a massage. I had a friend come with me.The food was great too and being so close was nice too.
So you have lymphodema but you didn't have many nodes removed right? I thought that only happens when you have many removed.Dr. Tito only removed my sentinol nodes.I learn something new everyday. Boy you haven't had it too easy through this, I know you said you had to get fluids often also. So far I've been very lucky,I see that know.
Hope to see you sometime soon.
Vickie
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Hi All,
I'd like to join this group. I got mapped end of Oct and started rads. I'm now done with 2 days. I have a total of 33, so 31 more to go. I had a lumpectomy in May and chemo June through mid October. I'm mostly nervous about the side effects on the skin.
Stacy
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Are you moisturizing after each treatment, Stacy? I was told it was important to do it after every treatment and to not wait until it seemed red or painful, as the damage is cumulative. I use emu oil, but I'm not sure what you use is as important as that you do moisturize the whole area after each treatment. They did tell me not to apply any for 2-3 hours prior to a treatment.
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Carolyn,
Are you doing the entire area? I was told to use aquaphor which I do have here. Is anyone else out there using this? Does it work? Is there something better I should be using?
Thanks!
Stacy
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Yes, I'm applying the oil all over the left side of my chest, including up by the sternal marker and my armpit. I start by rubbing scar cream (Tropol-Active S) on the mastectomy scar and the scar where they took out my port on the other side. Then I liberally apply the emu oil - 5 or 6 pumps, but I really don't have to rub it much, as it seems to absorb quickly. Then I finish with a light coat of hand lotion (Curel, fwiw), as I was told the emu oil helps other lotions absorb more readily. I figure it can't hurt, and so far, so good! No signs of redness or tightness. Good luck! Today was 7 out of 33 treatments for me.
Someone on these boards recommended emu oil, but I've seen lots of other recommendations, including Aquafor and vitamin E.
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Hey Stacy
How are you? Glad to see you here. We both made the move. I've had ten rads so far and all is well. I got a staph infection over the weekend and it sucks more Dr's appt's just what i needed. i start pt this morning and it felt great. They told me i have cording from the Ln removal. This is never ending. Are you getting psyched for your benefit? You are truely loved...Talk to you soon.
xoxo
Betsy
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Betsy,
Yes I'm really excited for the benefit, I can't wait to see everyone and socialize. I miss seeing everyone sense I've been out of work.
Sorry to hear about your infection, that does suck!! I also went through PT for the same thing. It helped somewhat but there is still some cording they didn't resolve. I hope yours goes really well.
What SE's have you had from rad?
Hugs!
Stacy
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Hey Stacy....
No major se's yet just a little red and my skin is getting dry and i'm not the best at putting cream on it. I am starting to get tired which i'm sure would be worse if i was working this week but due to the infection i can't go back to work until next Tuesday. Oh joy, another week without pay. I'm having more se's from the antibiotics. I'm very itchy and my stomach is ill. I wish they could just give it to me in my iv, it would be easier. I see the rad onco tommorow see i'll see what he say's. Let me know how you are making out. Give those cute boy's a hug from me....
xoxo
Betsy
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Thanks Betsy, I hope your kids are doing well as well and are helping you! Hang in there and I hope the infection goes away quickly!
Hugs, Stacy
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Betsy- "Itchy" doesn't sound like a normal SE from antibiotics. Sometimes people get itchy or break out in a rash when they are allergic to a med. If it gets worse, stop the meds and call your doctor. The upset stomach is a common SE from antibiotics because they kill all the flora in your intestines. Be sure to eat probiotic yogurt in between doses or take acidophillus to replenish it. That should help the stomach.
StacyA- Welcome! I just finished #12 of 33. So far just a little redness and a little itchiness. My RO is a huge believer in Aquafor only (3-4 X a day). As it is so sticky and greasy, I got him to agree to let me use Aloe vera (only from a plant that does not have additives) and Homeopathic Calendula Cream by Boiron (Whole Foods). Every doctor likes different things. They also said only unscented soap like Dove. Pat dry, never rub with a towel. Drink 2 quarts fluids a day. A lot of ladies say exercise or walking helps with the fatigue. Best of luck! -
Day 4 today and I'm starting to get sore. I sure hope the weekends off help. I have started using Aquafor but I agree it's a bit messy. I hope everyone is having a great week!
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My Rad On recommended either Aquafor or Eucerin. I'm using the Eucerin (calming cream) 2-3 times a day; it's not greasy and has worked well for me. I got it at Target. I also use (fresh) aloe 3-4 times a day. I have fair skin, freckles; I've finished 28 treatments and 4 boosts, and I'm pleased at how well my skin is doing. Yes, it's been quite red and especially sore under my arm; but my skin has not blistered or broken. Early on, I had a very itchy area; after trying 1% hydrocortisone then prescription 2% then saline compresses, I got a prescription for Topicort (which a couple of people recommended). It worked like a miracle, and I never itched again.
I had rads to the other breast 21 years ago; there was no Internet and nothing was recommended. At that time, I had oozing blisters. So I know the aloe and Eucerin have made a difference.
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StacyA! Great to see you. I got sore, and then remarkably, got a ton better. Now, at 22, I'm really A+. So your body may be adjusting.
I used Biafine cream. I know there is mixed feeling about it, as it has parabens in it. I have done remarkably well, with just a slight "tan" under the breast (which I probably could have headed off had I used more cream in more areas). I'm not really red.
I certainly respect the wish not to use things with parabens. I have removed them from all other aspects of my life as much as possible, as I think it is unclear what they do to us. But for this short stint, I felt for me it was worth the risk. My doc originally recommended aloe only. I knew from the start that simply wouldn't be enough to keep the skin conditioned well.
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Where are all of the October ladies? Everybody must be so glad for a 2-day vacation that we're doing other things, I guess. I started Oct. 5 and it's hard to believe that I only have 9 tx left and will be done the week before Thanksgiving--and boy will I be giving thanks when this is over!
Kathy
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I'm now into my boosts, with #3 coming tomorrow. I'm having 2 sessions on Wednesday (one in AM, one in PM) b/c the server was down last week and no tx could be done, and I asked for a make-up so that I would be finished this week. Friday is my last day!!!
I've not had real issues with burning till now. Maybe it's a latency effect? My skin was red but it wasn't hurting, but I noticed Friday night that I was sore and felt raw in that area---it was so uncomfortable that it woke me up. I've been using Aquaphor and thought it was helping, but it doesn't seem to be now. I slathered a lot more on yesterday morning and have used more cornstarch than usual to help with bra friction. The areas effected are under my breast and near the SLN bx scar. The skin is painful to touch, too.
AICa---they already had the mold done before I started my first boost session. The tech said it was designed from the CT scan. He popped out a piece of blue rubber from the metal square and added the square to the cone. He then turned on the machine lights and drew the outline of the area on my breast, which they re-traced again the next day, and apparently will do every day of tx. They are also still marking both sides of my breast. I will not miss being marked up like a bad football play chart!
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QCA- we shd be finished about the same time if all goes well. I hopefully will be done the day before Thanksgiving. Two more boluses to go-hope dkin holds out because my wbc are also heading down.
Dawn KY-have had the redness and swelling and tender skin under arm and under breast-Aloe seems to be helping for me and aquaphor at night. Hope you are feeling better.
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Definitely getting redder. Apparently, the radiation continues to do its work, even after the treatment. I'm about 10 away from being done, and very ready to tie this up! 8 boosts for me.
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I've had 24 tx and I get my last 4 tx this week. DONE on Thursday. No boosts for me. I have started to get pretty red along my colarbone and lots of hyperpigmentation so I am glad that it is nearly over. I do think the redness is expected to develop for a while after the last treatment so I probably will have to continue my regimen with Aquaphor, etc. I am also using quite a bit of Cortisone 10 Plus just for extra precaution. Soooo glad to be tossing this stuff out soon.
Our son is getting married on December 11th and I am still trying to decide what I am going to be wearing to the ceremony to hopefully conceal any yucky skin. I just hope that it is all cleared up then.
Joan
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Hi all, I've had 9 od 33 tx so far and my skin is a little pink, and sometimes it feels sore. I also have occasional shooting pains that the rad onc said is from the inflammation caused by rads. The nurse told me last week that they are trying to make my skin burn--that is what the bolus thing is for--to bring the radiation closer to the skin. That is supposed to kill all the cancer cells left in the skin. I'm worried how my fair skin will hold up!
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Hi Rad Friends, Today I finished cycle 5 of 6 CMF chemo (the one with C pills for 14 days and 2 MF infusions per cycle). Next Thurs I get my follow-up mamos, got my rad tats end of Oct. Start rads Nov 16 and have cycle 6 chemo (only C&F for last cycle) starting Nov 23. All chemo is over Dec 6, so from Nov 23 through Dec 6 I'll be doing chemo and rads. I'm scared. I get 33 rads and some boosts. Should be all through by end of Dec.
Dear God, I'm praying for all of you and for me too!!!
Hugs XXXOOOXXXOOO Beans
BTW - the cost est I got for all rads is $150,000 - it is big money so I think you should be treated with kindness.
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I'll be finished 11/16. I already had my boosts now just finishing up the regular treatments. My skin has not broken down at all, it's just red. I'm very generous with the aquaphor right after treatment and then again at bedtime. Looking forward to the fatigue subsiding!!
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