Lumpectomy Lounge....let's talk!
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Mellang, you might try Miaderm L which is non-prescription and more of a cream rather than the thicker ointment of aquafor. I found the miaderm L worked really well and has a little lidocaine in it to help with pain. I just bought mine on Amazon for around $40 I think. Even if your kin seems fine, use the creams. The issues can build slowly without outward symptoms. Hang in... the skin does really heal in about 2 weeks. I though mine would take forever, but as has been stated before, almost overnight it suddenly gets better.
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Mellang,
Yes, it looks like our diagnosis are similar - at the beginning of my treatments I used Aquaphor and Aloe Vera Gel (with no alcohol), the nurse gave me a couple of samples of Underly Smooth lotion, and with all of this my skin has been holding up pretty well. The last week or so it began to look and feel like a really bad sunburn, so that is when the nurse gave me a very small bottle of Radiaguard - it worked really well (although the Aloe Vera Gel is also quite soothing), so I am now using the Radiaguard and alternating with Aloe Vera. I would definitely suggest the Radiaguard but only one pharmacy in town sold it, otherwise I would have had to order from their company website or Amazon.
DaraB, I also saw Miaderm next to the Radiaguard on shelf at the pharmacy, but I had already tried the sample of Radiaguard and liked it, so that is what I bought. My skin was OK most of the treatments but except for the last couple of weeks, guess since it is cumulative that is why this is occurring. I did tell the rad techs last Friday that I could not take anymore treatment under my arm area and that is when they decided to begin my boost treatment. However, I actually began my treatments mid-week, so that would make sense that I would end them mid week as well (Thursday will be my final treatment - Yay!).
Celand
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hi celand: I am 12/33 and using miaderm L alternating with aloe gel. I am having deep muscle pain. I also started on femara Jan1 and it has been interesting. I have slight nausea and joint paint ( i am a diabetic, have psoriasis and arthritis). I had everything under control but now everything is starting up again. I believe that my joint pain and nausea started when i began hormone therapy, i too am post menopausal. I have evenhad slight hot flashes. Too weird.
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Just curious, Miko, and perhaps this has been asked before—if your tumor was in the 1-2cm range and you had no positive nodes, how could you be “Stage IB?” You are really Stage IA. Perhaps you’re confused by your tumor listed as t1b, which refers only to size (5mm-1cm) and not stage. I had four nodes removed, all of them negative; my tumor was 1.3cm, which is “t1c,” yet I am officially Stage IA.
If this has been pointed out to you before, you need to go to your profile and change your stage. IB would mean you had malignancy of between .2-2mm in a node, which you state you didn’t.
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yes it has been confusing as my ro and mo are not the best communicators. I just found found on Wednesday that i am indeed 1b. It was confusing to me because I have been getting different answers and will be changing my profile. My surgeon told me that i had microscopic cells in the one node they took out and although i was now 1B it should not have been addressed in the report. I finally got to talk with my ro and asked him why my nodes were not being treated since I was in the prone position. He said the cells were microscopic and that the risk of rads while on my back as too great on my heart and lungs. (Left side lumpy)So he put me in the prone position and went as high as he could to get as many nodes as he could. This is good because i have asthma and slight irregular heart beat.
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Thanks DaraB and Celand, I will look for both and see what I can find. I am very fair skinned and defiantly want to do everything possible to minimize the skin issues. I have been warned by everyone that it will get worse each week and since I have 20 more treatments to go....I have a ways to go. I keep reading about the "boost" treatments that happen at the end. Is everyone getting them? Is it dependent on the doc or dx? I will be asking tomorrow when I go in if this is something I will be having. Maybe they don't tell you until the end so it does not freak you out. Thanks again. It sure helps being able to ask others that are going or have gone through what I am going through!
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HI Mellang: I had a similar experience with my RO and nurse. I was mentioning to the nurse that my psoriasis was acting up after 5 treatments and she said it will get much worse. Well, thank you very much.. BUT, i have been reading all the comments of these wonderful ladies on this board and started using Miaderm L alternating with Aloe before I started rads. I am now 12/33 and am holding up ok. The area of the surgery was right behind my nipple ( and the surgeon warned me that it would be difficult). The incision was around my areola so you can't even see it now. So I am assuming that the rad treatment is to my nipple area. It has turned very brown and the skin around seems a little bit red but otherwise ok. I am hoping that if I keep up with the creams this experience won't be tooo bad. The nurse scared me alot, but, the ladies on this board have helped me alot to ease my fears and move forward with treatment and my eventual boosts
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celand, you will get a lot of relief with the boosts. It is only the tumor bed so your underarm will begin healing. I used Miaderm L as well. I also used aquaphor religiously at bedtime. It's very thick and sticky so I wore men's undershirts that I could throw away after.
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Molly50,
It seems that I am beginning to slowly heal on my underarm area. The rad techs told me to give it a week or two, I am wondering if I will ever feel "normal" again! Now that they have started my boost treatments, I can see light at the end of this very long tunnel! Definitely ready to get past this and on to deciding what medication that I will take for the next five to ten years.
Celand
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So I have a little different question for those who also went through chemo. I posted on the hair site, but this one is much more active. I know my hair has grown when I compare my first PFC pics, but it seems like while the texture and color has changed, the length of my hair is shorter in spots (most of it) than it was a few weeks ago. Does the initial hair that's like fuzz come out when regular hair starts growing? I'm now 15 weeks PFC, and parts of my hair seem to be only about 1/4 inch long now. Thanks!
One other quick question. Can I ask how many of you have an MO who follows tumor marks post treatment? My MO says he will not follow them as they are too unreliable. I understand that, but at the same time want some sort of means to note if something changes dramatically (other than mammos.) I've been dealing with lower back pain for 2 weeks and have been a little freaked out thinking maybe it's related. Thanks for sharing!
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For whoever it was that was asking about brachytherapy, this was in my email this morning:
Summary
Background
We previously confirmed the non-inferiority of accelerated partial breast irradiation (APBI) with interstitial brachytherapy in terms of local control and overall survival compared with whole-breast irradiation for patients with early-stage breast cancer who underwent breast-conserving surgery in a phase 3 randomised trial. Here, we present the 5-year late side-effects and cosmetic results of the trial.
Methods
We did this randomised, controlled, phase 3 trial at 16 centres in seven European countries. Women aged 40 years or older with stage 0–IIA breast cancer who underwent breast-conserving surgery with microscopically clear resection margins of at least 2 mm were randomly assigned 1:1, via an online interface, to receive either whole-breast irradiation of 50 Gy with a tumour-bed boost of 10 Gy or APBI with interstitial brachytherapy. Randomisation was stratified by study centre, menopausal status, and tumour type (invasive carcinoma vs ductal carcinoma in situ), with a block size of ten, according to an automated dynamic algorithm. Patients and investigators were not masked to treatment allocation. The primary endpoint of our initial analysis was ipsilateral local recurrence; here, we report the secondary endpoints of late side-effects and cosmesis. We analysed physician-scored late toxicities and patient-scored and physician-scored cosmetic results from the date of breast-conserving surgery to the date of onset of event. Analysis was done according to treatment received (as-treated population). This trial is registered with ClinicalTrials.gov, number NCT00402519.
Findings
Between April 20, 2004, and July 30, 2009, we randomly assigned 1328 women to receive either whole-breast irradiation (n=673) or APBI with interstitial brachytherapy (n=655); 1184 patients comprised the as-treated population (551 in the whole-breast irradiation group and 633 in the APBI group). At a median follow-up of 6·6 years (IQR 5·8–7·6), no patients had any grade 4 toxities, and three (<1%) of 484 patients in the APBI group and seven (2%) of 393 in the whole-breast irradiation group had grade 3 late skin toxicity (p=0·16). No patients in the APBI group and two (<1%) in the whole-breast irradiation group developed grade 3 late subcutaneous tissue toxicity (p=0·10). The cumulative incidence of any late side-effect of grade 2 or worse at 5 years was 27·0% (95% CI 23·0–30·9) in the whole-breast irradiation group versus 23·3% (19·9–26·8) in the APBI group (p=0·12). The cumulative incidence of grade 2–3 late skin toxicity at 5 years was 10·7% (95% CI 8·0–13·4) in the whole-breast irradiation group versus 6·9% (4·8–9·0) in the APBI group (difference −3·8%, 95% CI −7·2 to 0·4; p=0·020). The cumulative risk of grade 2–3 late subcutaneous tissue side-effects at 5 years was 9·7% (95% CI 7·1–12·3) in the whole-breast irradiation group versus 12·0% (9·4–14·7) in the APBI group (difference 2·4%; 95% CI −1·4 to 6·1; p=0·28). The cumulative incidence of grade 2–3 breast pain was 11·9% (95% CI 9·0–14·7) after whole-breast irradiation versus 8·4% (6·1–10·6) after APBI (difference −3·5%; 95% CI −7·1 to 0·1; p=0·074). At 5 years' follow-up, according to the patients' view, 413 (91%) of 454 patients had excellent to good cosmetic results in the whole-breast irradiation group versus 498 (92%) of 541 patients in the APBI group (p=0·62); when judged by the physicians, 408 (90%) of 454 patients and 503 (93%) of 542 patients, respectively, had excellent to good cosmetic results (p=0·12). No treatment-related deaths occurred, but six (15%) of 41 patients (three in each group) died from breast cancer, and 35 (85%) deaths (21 in the whole-breast irradiation group and 14 in the APBI group) were unrelated.
Interpretation
5-year toxicity profiles and cosmetic results were similar in patients treated with breast-conserving surgery followed by either APBI with interstitial brachytherapy or conventional whole-breast irradiation, with significantly fewer grade 2–3 late skin side-effects after APBI with interstitial brachytherapy. These findings provide further clinical evidence for the routine use of interstitial multicatheter brachytherapy-based APBI in the treatment of patients with low-risk breast cancer who opt for breast conservation.
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Dara, my MO has me do routine blood work prior to every appointment with him. My understanding is they are looking for elevated liver counts, increased blood calcium, changes to RBC and WBC, increased lymphs etc for hints as to whether there is something going on that justifies scans.
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DaraB...did your psoriasis flare with radiation? I am about to start and we had discussed our psoriasis earlier in the process
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thank you molly50, I've been turning up much more positive info and studies on the brachytherapy but I know some doctors still haven't come all the way around on that. It's good to see more options if they are available
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Dara -- Many of the women I have spoken to about the hair growth have said the first hair come in white and then it gets pigment. I know my eyebrows are a very very light brown. I can't see them if I am too far away from the mirror. I can feel hair on my head, but I still can not see it.. So it maybe too light in colour too. I can't tell if I have long or short patches yet.
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Wondering if initial regrowth is similar to the hair newborns have—“lanugo,” later replaced by the real stuff. Seems analogous, since you are regenerating new hair follicles to replace the ones killed off by the chemo.
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Jiffrig, my psoriasis didn't change with radiation. I kept using my topical lotions and I did fine.
Thanks Molly. Those are the things my MO is checking also before each visit. The tumor marker I wondered about is the CA-15 and CA-127. I know there are lots of non-related things that can affect those antigen markers so it's controversial as to their monitoring. I have mixed feelings about them, but I guess the other tests can show changes and may be more reliable.
Thanks Elizabeth. My hair is now pretty dark, but just shorter than it seemed a few weeks ago. It does have a different texture. The side and back have some curls and the top is straight. I know I"m just being impatient. BTW, my sister told me about a great eye brow aid, by Benefit that is called Gimme Brow. It is a liquid with a brush to darken all the light hairs. It looks more natural than pencil, but it use the brush, pencil, and a liner to try and get natural (not) eyebrows.
Thanks, Sandy. I wondered the same thing. Maybe my head is now at the beginning toddler stage lol.
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Dara, my hair came in exactly like you described. Initially baby duck fuzz.Very short and white in the front. The back grew out faster than the front, too. I just put up with it for a couple months until it was about 1" long, then had it shaped up by a beautician. It was still very short, but at least it didn't look like I had stopped my hand in a light socket anymore
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Will this never end? The hospital is dunning me for $700 in labs my MO performed when i saw her in Nov 2016. I'm going to have to separate from my MO--I just can't keep fighting with them. There is another group with another hospital where I havea lot of specialists and a lot of procedures. I'm going to call them tomorrow.
Now an update on mom--she is still in kidney failure, but is regaining some strength in the rehab place. She is furiously complaining that her children have put her there and are tryng to get her money. She is failing cognitive tests left and right, esp. anything to do with numbers and cannot fathpm the check register. My sister's have invoked the power of attorney now. We have found more unpaid taxes.
We need to get her and these records to a neurologist to have her officially evaluated for competency. We need to have them take het leus away. When mother finds all this out, she's going to rain fire down on us all.
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Poodles, you cannot catch a break! Geez. Sounds like your current MO is really part of your insurance problem. Changing makes sense if you can find another you like. And your mother. OMG. What's to say? You and your sisters are doing what needs to be done to keep her safe. I hate to say it but she may be one of those people who get nasty with their dementia. I have a girlfriend whose MIL was extremely nasty and cunning with her dementia. Told my friend's friend that my friend was be cruel, nasty, etc to her. Ex-friend then raised a stink and caused huge problems for my friend. It ruined a 30 year friendship and my friend has never forgiven the ex-friend. I say this to prepare you that you mother may never stop complaining. Just keep doing the right things (which you are). And we're here to support you and provide a shoulder when it gets to be too damn much. Many hugs, positive vibes and love.
HUGS!
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Poodles, hugs and prayers!
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Dara, BeneFit has a complete “Brow" line, and at my local Macy’s a brow-and-lash bar. But what I like is Physician’s Formula liquid liner/brow & lash enhancer felt-tip pen. I use the black as an eyeliner, and the brown to fill in the gaps in my brows. (I’m blonde, but my brows used to be dark brunette; they’ve turned a bit lighter now as they’ve thinned). I make tiny strokes to look like hairs, and then use BeneFit’s “Brow-Zing” wax to blend and set. Jill (LovesToFly) made a YouTube video demonstrating corrective eye makeup (including brows).
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Poodles.... Hugs!
Dara...my hair has come in dark and growing at a snails pace. I don't have enough to see a curl. I give up on thin eye brows and few eyelashes. ...I try to pencil in some brows but my eyelids are still irritated and itchy from new ashes growing in...slowly.
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Celand, Aquaphor worked really well for me. I tried coconut oil first, but no help at all. I applied the Aquaphor on very thick and covered it with a gauze pad held in place by my bra.
As for AI....I had a few SE's at first while by body was adjusting to the lowered estrogen. Doing well now.
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Saw my shrink yesterday and asked about Contrave (the Wellbutrin-Naltrexone combo pill that supposedly is more successful for dieters). He said that the Naltrexone in it is for all intents & purposes an opioid and is both constipating and potentially addictive; and there isn’t enough Wellbutrin in it to either control depression or keep letrozole-induced joint pain at bay. He corrected me: Cymbalta, which is now prescribed officially to control AI joint pain, is an SNRI, but Wellbutrin is an SDNRI (on both norepinephrine and dopamine receptors). One symptom of abrupt and profound estrogen suppression is dysphoria—so it stands to reason that both Wellbutrin & Cymbalta would work, because perhaps joint pain often accompanies depression. (Remember the original commercial slogan for Cymbalta: “Depression hurts…”)?
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Nash54,
I just put some Aquaphor on when I returned home from treatment. Immediately following radiation treatment, I apply Radiaguard, then by the time I actually get home that dries and I was able to put on the Aquaphor - that is helping pretty well as my skin in underarm area seemed to be cracking and was painful off and on all day, however, I also have been taking Tylenol for the pain and that helps.
Since I have tested to be post menopausal, bet that my MO will want to put me on an AI drug rather than Tamoxifen (which I really don't want to take because of the increased risk of blood clots and uterine cancer.
Celand
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Dara, my hair came in patchy as well. My hairdresser recommended buzzing back down right about where you are now. Your hair will look healthier and fuller. I'm also going in for touch ups every 8-10 weeks, so she can shape it and guide me in how to deal with it when it gets shaggy
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Radiation is over....
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ElizabethAM....congrats!!!
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yeah well done Elizabeth bet your delighted
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