TRIPLE POSITIVE GROUP
Comments
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sunflower and achpurple - the thread called Herceptin/Quick Side Effects Poll has lots of entries that list bone and joint pain as a SE
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dragonfly - I posted this a while ago here you go:
Here is my list of things for rads (my appt was first thing in the morning):
Aloe Vera 100% Gel 6 oz Gel by Fruit of the Earth (applied directly after treatment) from amazon
Miaderm (applied 2-4 hours later)
Faulding Essentials Vitamin E Cream 75g (from Australia) (applied 4-6 hours later)
100% Pure Emu Oil (4oz) by Progressive Emu (applied 6-10pm) from amazon
Aquaphor Healing Ointment by Eucerin (Walgreens or CVS) (applied before bed)
(Rub the Aquaphor ointment vigorously between your palms to soften it up before applying)
Basis Sensitive Skin Bar (Walgreens or CVS) (used for washing before treatment, rinse well, protecting breast from direct shower spray)
I wore a very soft lightweight cotton tank top from Target each day under my bra. If you have 'saggy' breasts wrap the tank top all the way over and under the breasts so there is no skin on skin contact where the breast ‘hangs down'. the tank should also came all the way up to the base of the armpit area. I also bought a bra that was larger and looser than normal.
I used a VERY generous amount of lotion/oil/cream, smeared and gooped it all over the breast, underneath and under the armpit all the way to the back. Especially made sure the nipple area was well coated. The cotton tank top absorbed the extra so it didn't get on my bra.
I would also suggest taking a picture of your fields when they draw on you so you know where to goop and make sure you cover all the areas.
Hope that is helpful!
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Omaz Thanks! I didn't think the Aloe 2x/day was going to be enough to protect my skin.
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I have finished 4 once every 21 day treatments of A+C and will start soon on Taxol once a month for 4 months. My ? is: does the lack of energy/fatigue get worse and last longer as time goes by? I am now feeling exhausted all the time.
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dragonfly: My RO prescribed a cream called Biafine and I used it 3x per day, that's all. And I got one tiny itchy spot under my bra one day and I put a dab of hydrocortisone cream on it and it went away in a couple of hours. Stayed in the same bra also, just the least tight setting. I'm done with rads now (about 1 week out) and sometimes put 100% emu oil on it before bed just to keep it moisturized. My sister has a friend who went through rads about 5 years ago and she says she still has times when it's really itchy and red for a while, but she thinks it's because she didn't do what they told her to do while going through it. Who knows, but my RO said to put the Biafine on for about 2 weeks after rads so I figure adding emu oil on occasion can only help. I buy it from a lady who makes her own natural soaps, etc.
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SpecialK: I get on that thread and post, but it's sometimes very slow going on there.
I also get an echo every 3 months. Mine is coming up on July 6 and then I'm scheduled to have Herceptin right after so I hope they can give me immediate results so I know whether to get Herceptin or not. Guess I better call to find out.
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My Muga's are on the 3 month schedule.
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Sunflower my rad doc and I just discussed this today because I have had so much bone pain all over, but mostly the large joints, hips, knees, shoulders. I mentioned maybe just a SE of all the treatments and what our bodies have been through, from chemo to surgery to rads. Its alot for the body to handle. He could not come up with a good reason and said if it was bone mets we would have a lot of pain in a localized area not all over as in arthritis type pain. I will be getting a bone scan next month when done with rads. Let us know on your pet scan.
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Good timing on the Rads discussion since I had my marking today. They told me to use just aloe and vitamin E but nothing 4 hours before treatment but I have very pale skin so I'm sure I'll need lots more.
MUGAs - every 3 months was the plan but with my heart palps, they are telling me more often. I'm only at 2 Herceptin infusions with another one on Monday.
Thanks for all the great information.
Arlene
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Hi All,
I have a question. It seems like alot of you ladies are getting radiation after your chemo. I was told I wouldn't be needing it by my MO. but I see you are getting it Arlene and we have very similar stats. Hmmmmm. Anybody else not getting rads?
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Bucky There are many reasons to have and not have rads. I didn't. I was in a gray area. My Rad Onc gave me a pass since I was doing such aggressive treatment (6tx of chemo, herceptin and 5 years of Anstrozole).
Location could be a factor. How clear/close the margins were etc. Look at my stats. It's not typical for someone with at tumor larger than 5cm (5.5cm IDC other part 1CM of DCIS) but my rad onc didn't want to stress my body further.
There is a lot of gray area in our treaments.
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Bucky: My onc said Rads are just another precaution in the affected breast to ensure it (hopefully) doesn't return. I'm probably more afraid of Rads than chemo but guess I was pretty frightened about chemo in the beginning. Rads should begin on 11 July for me.
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I'm in the heat of setting up for rads...and I'm FREAKING OUT. Yesterday was a series of stressful appts and the RO completely back pedaled on what he told me a week ago. That hasn't set well with me. Add in a 2 HOUR mammo being called back three additional times for more views....I was/am shot.
I'm seeing my onc in the AM for an unplanned appt because I just cannot make peace with this. Too many changes from the initial plan. Rads are non-negotiable for lumpectomy. Why? What risk am I assuming if I skip rads? The RO said that he "didn't have those numbers". *sigh*
The IDC component of my cancer was removed during biopsy. That's tripping me up and making me second guess rads.
And a second opinion would be difficult. We live in a primarily rural area and the RO I have comes down from the U of Iowa. Driving to a metro area would mean moving 4 hours from home for the next 7 weeks. And I have four kids and a DH who works a ton of hours. Now, it's not ruled out that I won't move 4 hours away with the kids for 7 weeks....I'm just trying to make peace with having rads here so I don't ahve to do that.
I just want to scream. I can't believe this is stressing me out so much!
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bucky317--No rads for me. I saw the RO after the MO and before chemo started. He said there was nothing left to radiate after a lumpectomy, re-lumpectomy, and then MX. I ended up with 2cm of clear margins by the time they were done.
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PasSmith: I like your treatment plan much better. All my margins were clear after my lumpectomy and they still want to do Rads. I keep questioning it but get the same response....lumpectomy means rads. DARN!!!
Pejkug: I'm in a rural area but not nearly as far as you - I'm only 1-1/2 hours away but will stay in town during the 6-1/2 weeks rather than make that 3 hour drive daily. Good luck!
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My BS told me from the beginning that I would have rads, but maybe not chemo. I had completely clear margins even within the fibroadenoma where my ILC (8mm) was found, and my lumpectomy took only a few minutes, but they told me rads were necessary because if any cancer cells were on any instruments they used or anything that radiation would kill them. The chemo turned out to be necessary after the third test came back HER2+, totally to prevent from recurrence.
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Good luck to all of you starting rads. I asked many questions and they showed me my plan with all the lines about where the radiation was going and the parts of non-breast tissue that would also get radiation. I think it is important for rads to have a good plan, eat well, rest, drink water - oh yes and don't stress the arm too much because the lymphatics can be touchy during rads.
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Thanks ladies, I feel so much better now!! My mass was right underneath my right nipple, so it was not close to the lymph nodes or chest wall. Maybe that is why no need for rads. I was told by both my BS and PS at time of the bilateral mx that rads would not be needed.Oh well, I am not going to argue,but just wanted to make sure I am not missing out on something too!!! Tx number 3 tomorrow, and I am buzzed on the steroids once again.
pejkug3; sorry to hear about your rads problems, hope you get it cleared up soon and can move ahead on your healing. What a pain in the ass.
Arlene did you have a mastectomy or lumpectomy?
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I was told I wouldn't need radiation. Had BMX (though IDC 2 cm was in the R breast only). I asked the MO who confirmed this too- said it was not needed in my case. It does seem a gray area. I would have done it willingly had any of my MDs felt it needed. I am more scared of chemo (which is done now) than rads- I worked as a nurse in the oncology field a long time (several years ago).
I was initially recommended for lumpectomy- but not after the MRI showed the IDC then I had some DCIS too- so MX was the plan- and I asked for the bilateral.
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arlene: just saw that you had a lumpectomy, I type slow
achpurple: my initial test for her2 was neg too!! then my oncotype came back unequivacable, then the third test was positive. I couldn't imagine not getting the Herceptin! My MO said there are false positives for Her2, but when a positive Her2 test result comes in, it has to be treated with the Herceptin,(in his book anyway) better safe than sorry right. My case was discussed at the Breast Cancer Committee meeting before I started tx, (because of the 3 different results) and if you can believe it, not all the MO where on board for the Herceptin at first. Crazy!!!
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Tomorrow is my last day of 6 weeks of full rads, and then I will do one week of boosts (5 days)...I was going to skip the boosts, but changed my mind (covered on the May rads thread)...
I totally went against my gut with the rads...I really didn't want to do it....one of the main reasons is because I'm afraid it will open my incision (which just closed a few weeks before)....
Well two weeks in and two small holes opened up. That's how it happened while on chemo...two small holes that grew...but within two days this time....they closed up...right now there is a hard like scab over one, the other is completely healed....my PS said it looks great.....
All that to say this....follow Omaz's skin care routine. I did, and my RO said my skin looks fabulous..I only have some redness under my arm, and on a spot where I burned really bad as a kid....other than that ... EVEN WITH BOLUS....it looks good.
OF course I don't know what boosts are gonna do....we'll see....
Rads is an energy suck....be prepared for that.....I think it is much more tiring than chemo was....
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Maybe I'm missing the mark on what questions to as the RO about rads. I'm the first to admit that my brain is fried and I'm just not communicating well with him.
What sorts of things should I ask? Pointed, direct things. OMAZ and TONLEE, what sorts of things did you ask? I had lumpectomy so my issues may be different than yours, but I'm really not feeling comfortable with doing rads. I know I'll end up doing it, but I like to know the PLAN before I agree, I guess. My supraclav wasn't mentioned at the initial consult, but was included when the RO did the markings yesterday. I hate surprises.
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sunflower, I do have some pain in my right rib cage - on the side I was radiated. My onc and my BS assure me that it is probably radiation effects. And I do think homones can affect bones and joints - otherwise we wouldn't be so aware of osteoporosis with menopause. At least this is what I keep telling myself. Hope your scan is uneventful.
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How much Miaderm do you think I'll need to get me through the 6 1/2 weeks? I'll be placing my order tonight.
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I asked:
1. What fields do you want to treat and why? (I see you have a positive node, and the newest study out shows women with 1-3 positive nodes that have rads to the axilla (underarm) have less chance of mets.)
2. How many treatments are we looking at? (Most lumpectomy treatments go 33, 28 "regular" and 5 boosts.)
3. Are boosts necessary? (I found studies that say it decreases the chance of local recurrence by 41% over women who do not have boosts.)
4. If I start to burn badly, what is the plan? Do we stop?
Radiation is probably the most straight forward tx in this BC journey. There are plenty of studies that show rads with lumpectomy is far superior than just surgery alone. I found them when I was considering just doing a lumpectomy. In fact, I read so many of them that in my mind I accepted lumpectomy and rads go hand in hand...and since I didn't want rads, I chose a MX (believing my lymphs would be clear.)
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Pejkug - With all the other stuff I used about 1 tube. Even when you are done with rads I think it is good to keep lubing for a while. I asked to see the plan - and they showed me the images from the CT scan with these contour lines for the radiation fields on them. It showed where a little bit of the ribs and lung got radiation.0
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Thanks ladies.
Maybe the prblem is that rads is straight forward, like TONLEE mentioned, and I'm completely overthinking the whole thing. I really cannot believe how freaked out it all has me.
I believe it would really help me to see the field that will receive rads on the CT. I'm a pretty linear thinker and that would help me process this.I have an appt to see the onc in the AM but I'm really thinking about skipping it. They'll know I'm looney then. LOL One day I ask a ton of questions, the next I cancel the appt. The thing is, I don't think my onc will be able to answer the questions I have. They would be better directed to the RO.
I was unnerved because last week, the RO said my heart was too much in the rads field and I would need IMRT. This week, before seeing the CT, he says, "Oh, no. I rarely use IMRT on BC." Hmmm...his nurse took notes during my appt last week and I had a friend with - ALL of us heard the same thing. IMRT (or no rads) to my left sided cancer die to position and large breasts.
I don't like it when the plan changes midstream for no reason at all and then I'm told that I "misunderstood" when I know that I didn't.
I asked the RO what risk I was assuming if I skipped rads. He said that he "didn't have those numbers". Hmmm...don't you do this everyday?!
So my main questions are:
If chemo is systemic, why rads? If cancer can escape the breast area, why can't chemo get in?
What are the benefits to rads to the supraclav and axilla? Risks? (He intends to do rads to the supraclav and was unsure about the axilla. I want a concrete plan that I can get my head around before we start)
Why is my heart NOT in the way? What is this talk of pleurisy?
What risk am I assuming if I skip rads?
Why am I not a candidate for breast MRI? (the radiologist that read my mammo this week said I AM a candidate. The RO said I needed to ask my doctor...)
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I think rads is that little extra insurance policy just in case any of those little microscopic b%$*#@ escaped and are thinking of causing some trouble in the future. I think Tonlee will agree with me that we were a little freaked out in the beginning and now we are at the end. Probably the easiest of all my ca treatments but the most frustrating to have to invest so much time to do this on a daily basis.
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pejkug - After reading your post I think that your RO is not inspiring confidence and to go through rads I think it is important to be confident in your doctor. If you can, I would seek another opinion. As for the need for rads after chemo - I asked the same question and was told that after lumpectomy (I had) the blood flow to the surgery area is less than ideal and so that area doesn't get chemo as well as it should - hence the rads to clean up any leftovers. They also said that they really didn't know the exact reason but this was the prevailing theory.0
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I was offered lump/SNB/rads initially, but after much thought elected NS BMX, SNB which turned into AND, knew I would need chemo before I had surgery because of Her2 and reinforced by 2 nodes, but no rads even with the nodes. Different strokes for different folks - I even checked with my onc after tx#6 and he said no rads. And these are the guys who made me do the AND so I know they are conservative.
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