March 2009 Rads Group?
Comments
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Kristi, I finished chemo mid Feb. My hair is slowly starting to fill in, I didn't need the red devil, so I didn't loose it all! But I can tell that it's fuller, by that I mean the bald patches are starting to cover over! It now looks like I had my hair buzzed cut by a drunken hair stylist! I can't wait to go without my scarf all of the time! On the lotions... I use calendula lotion given to me by the doc, I use the aquafor at night, and I put on pure aloe right after tx, because it's in a little tube that fits in my purse and the calendula is in a big bottle. I have what reminds me of sun poisoning on my chest, I use 1% hydorcortisone for that and it definitely helps! Today is my 15tx, so I'm doing good. Getting tired, even with exercise, just like chemo, this affects each of us differently.
TGIF
Cinda
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Thanks for giving me hope that my hair is going to come back some day- I lost all my hair, though. I finished up with chemo on feb. 20th. I started radiation on March 23rd. So far, so good. I have been putting e-cream on after treatment and emu oil at night. Thanks everyone for being there...
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Hi Everyone,
Just had rad # 13. I'm getting used to the routine now. And yes, I absolutely get tired, like clockwork about 2 hrs after tx. So that's about 5 in the afternoon, and I've been trying to keep from taking a nap so I can sleep well at night. If I get busy with some activity, that usually helps.
No skin issues yet, and I'm still using just pure Aloe Vera Gel and Organic Olive oil. That's it. I guess my skin is a little pink, but not much. The incision scars seem to be sort of tougher, tho.
I really do feel so much better, it's been 7 weeks since I finished chemo. My hair is between 1/8" and 1/4" long, but coming in thick and dark, like it was. Still silky fine, too, which makes my wig rather slippery.
I don't know what I'm going to do when it's 1/2" long! But I'm just glad to see hair!! (Nothing on my legs or armpits or other unmentionable places, tho!)Continued good luck to everyone. especially those who have a little bit longer road ahead. Hugs.
Jessee
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Hi all!
I had #9 today.No skin issues so far--I was using emu oil right after and Burt's Bees at bedtime, but then I decided to reverse because of the way the emu oil smells...lol Don't think it really matters, except to me.
But--I now have a diagnosis of lymphedema. I'm a little upset that I wasn't told that I had such a high risk of developing it. I don't have a spleen (it was removed when I was 10, because of an illness), I've had several injuries to that arm, and then they removed 20 nodes--all of which adds up to a stressed lymphatic system. Not to mention the rads now...although to be honest the swelling began before I started rads, or at about the same time.
So I'm going to be fitted for a compression sleeve, and in the meantime, am doing some self-massage and elevation. One more permanent effect of bc. I HATE this disease!
And then today it took them longer than usual to set me up for rads--they were having trouble lining up the tattoos. One of the techs said that it might be the swelling from the LE that made the tattoos shift just enough--but I wasn't to worry, she didn't think it would be enough of an issue to delay rads....I hadn't even gone there yet! After all this, to be delayed would just depress me so much.
Monday when I go in, I'm going to ask for an appointment with the rads onc, to discuss this with him. I really don't want to be held up, but I know there's only so much I can do to resolve the swelling.
Guess I won't be moving boxes around in the attic as I thought I might this weekend...
Ladies, it really doesn't ever end with this thing. Somehow this has really stunned me--I'll be dealing with LE the rest of my life. I guess i had the idea that once I was done with treatment, I'd be done, except for followup and the dread of every mammo. I was prepared for that. Somehow this brought it all home. I sat in the LE class yesterday and almost cried.
Speaking of crying, yes, I'm still having some crying jags too--not quite as bad, and I'm not always sure if they're chemo-related or from the recent end of my relationship. We'll get through this too...
Hair is fuzzy now--I'm using shampoo on mine, too! I havne't gone out without a hat yet--too chilly. But there was a woman in the LE class who was "commando"--came in wearing a ballcap but took it off right away. If my hair (fuzz?) were darker, I might be bolder.
I have a lazy weekend ahead of me--just a sermon to write and church to lead--no meetings, no parties, no appointments. Hopefully no dental emergencies like last weekend, either!
Have a great weekend everyone!
Hugs to all
Martha
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Tx 8 of 30 is done - that's 1/4 the way through. The routine is getting pretty automatic now. I think that the good thing about chemo is that it makes radiation seem so easy (at least so far - I hope I'm not jinxing myself). Jessee, we must have finished chemo about the same time cause it's week 7 for me too. My hair is about a 1/4 inch and its coming in well but so far it doesn't have pigment. If it was darker it would look more like I had hair. I'll be glad when the pigment gets going.
My breast feels fine but part of it is definately getting pink. It looks like it is larger than the untreated one so there may be a bit of swelling going on. It is slightly tender.
Martha, sorry to hear about the lymphedema. That stinks.
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Martha, I'll probably be joining in with you with the lymphedema thing. Today, the radiology gals futzed around with me a lot, then said they wanted to take some xrays because I had some swelling under my arm and wanted to make sure the beam was still right since the tats were on the swelled area. GREAT!!!!! Everything feels so tight today. I'm on #20, and I just want it overwith! I had not had any arm swelling up to this point, but seem to have some under my arm and just above and below the clavical (collar) bone. My oncologist "promised" me that I would most likely get the lymphedema after the radiation. It's bad enough that the surgeon had to cut one of the nerves to the shoulder during surgery and I do have trouble with that.
So, from now on, I'll be thinking and praying for you, Martha, whenever my arm bothers me. I'm sleeping with my arm propped up ---- not very comfortable! And you are right -- it never ends!
Cora
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Bluedasher, I finished chemo Dec 3, and my hair is about 1/2 inch long now. MUCH darker than it was before with LOTS of grey. Salt and pepper for sure!
Cora
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Bluedasher & Nelia48 Thanks for the info. I got the name of another radiologist and will make an appt. with him and then decide. There is so much to think about.
Corrine
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Martha and Cora...I'm so sorry. It's bad enough you have to worry about cancer but to have a chronic reminder now. I wish I could take that away.
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Bluedasher - wow, I'm surprised they made you do chemo with your dx. My onc said the deciding factor was since my tumor was over 1 cm, and grade 3, aggressive growth, AND trip. neg, they wanted to treat it aggressively, and said chemo/rads was really my only weapon against recurrance, since hormones won't help me. But with a tumor less than 1 cm, and only grade 2, was it your choice to do chemo, or did they recommend it?
I've found it interesting how different treatments are in different parts of the country (and Canada).
Martha- I'm so sorry to hear about the lymphedema. I know there is a lot you can do to keep it under control, and from what I've read, it doesn't necessarily last forever. Sometimes it resolves itself if you are careful, which I know you will be. Remember, God is holding you in the palm of his hand and will see you though all this.
It's scary that life can be so unpredictable. I just try to stay focused on my goals and life's work. It keeps me sane!
Oh yeah, I forgot, my breasts are somewhat swollen too. I didn't need that. They are already too big! I hope they shrink by the end of this. Don't get me wrong, I am grateful for them...
Hugs and prayers,
Jessee
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I have been feeling pretty good through the rads so far -- 20 done so far. Today, I decided to go grocery shopping with my sister. Had a cart load of stuff. By the time I got home, lugged it all in, and got it put away, I thought my head was going to blow off, and I felt like I was going to faint!!!! I haven't felt this bad since the middle of chemo, and it scared me a bit. Is this normal? I really thought maybe just a little tired or something, but not this bad. I really just want to go to bed and stay there the rest of the day. Gees!!!!! Cora
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Jessee, it is because I'm HER2+. The NCCN guidelines say "consider chemotherapy" for HER2+ hormone negative tumors between 0.5 and 1 cm. The oncologist felt that TCH chemo was a good risk-benefit tradeoff for me and I agreed with her. I don't think she would have pushed hard for chemo if I didn't want it.
In December, the results were released for a couple of retrospective studies on women with small tumors who didn't get chemo. One conducted by MD Anderson looked at women with node-negative cancer under 1 cm. For HER2+ cancer, the 5 year disease free survival was 77% compared to 85% for triple negative and 95% for hormone positive HER2-. So, if I hadn't gotten chemo, my chance of recurrence might have been around 23% - that is higher than was previously thought. It made me really glad that I had decided to do chemo.
I also don't need the breast enlargement. My breast is getting definately tender too.
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Hey Cora,
I passed out after my 6th chemo and all I was doing was having dinner with friends. Our bodies are running a marathon of on the inside. So take take lots of breaks.
I'd say if you continue feeling this way for a week or two, call your DR.
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TorchSong and Cora: Sorry to hear about your LE. Wish we could all band together and run BC out of town! But I guess since we all live in different towns I should have said run BC off our planet or run it out of existence! Wouldn't want anyone to get it!
Cora be kind and rest today our bodies have been thru so much, they deserve a bit of pampering!
Good to know about the length of your hair, last chemo for me was 2 Jan and I have about 1/4 inch of hair, mostly white but some black hair which is much darker than it was. Eyelashes still are thin, I find myself admiring those with long thick lashes!
ReneeS - Make sure you Rad Onc knows you passed out, take it easy today. WE deserve it!
To all: Have a pleasant Sunday! Gearing up for my next 5 days!
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At the risk of sounding like a complete idiot, why is there such a discrepancy between the high number of lymph nodes removed and negative lymph nodes? It's my understanding that hospitals have the capability of testing each node removed. But I see women with a life time of Lymphadeema unnecessarily. It's like pulling weeds with a back ho. It's understandable if it's obvious that there are positive lymph nodes, however, why aren't they testing each one? I don't care if it adds an extra hour to the surgery. I'm so happy I have a conservative surgeon.
My bitch for the day.
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Ladies,
Thank you very much for everything. The information on the redness and creams and tiredness has really put my mind as ease. I feel like I can at least prepare for the coming weeks. I am anticipating enjoying the people at radiation and thanking them for their guiding hands, exercising daily and feeling good. I am pushing off my airplane trip for a few weeks, just have to much to do around here. Well, # 5 of 28 tomorrow, here I come!!!!!!!!!!!!!! Kristi
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Renee S, I'd love to know if there are any surgeons anywhere who will do what you suggest -- I had 16 perfeclty healthy nodes removed because 2 of 3 sentinel nodes were positive. My surgeon, oncologist, and everyone else told me that there is no other way to do it. Now I have mild lymphedema and am hoping that it won't get worse with rads. I can't go back in time, but I'd like for others to know if looking at nodes one by one is actually possible. My understanding is that the nodes are in a cluster embedded within a fat pad, so it seems like it would be more than just an extra hour to try to test them one by one during surgery. Any info appreciated. thanks.
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I'm certainly not an expert on the subject. I frankly have no idea what I'm talking about, but I do know that the sentinel nodes can be tested while the patient is in surgery indicating weather additional nodes should be removed. I run into a young BC patient a week ago that had 15 removed and all 15 were negative. She now has to wear a compression sleeve. This just doesn't make sense to me. I chose my BS based on the fact that he was conservative with the removal of the nodes.
My SIL had 20 + removed, 13 positive, and has lymphedema but said other than the swelling it feels fine so she doesn't wear a sleeve. Does it get painful?
Thanks for the clarification Sama. I get a little pissy with cancer every once in awhile and I fly off the handle.
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Renee, they can do an SNB and take out a node or a few nodes and do a quick test to see if what they took out is cancerous. It is called a frozen section. Then they can take out the rest if what they took out showed cancer. But there are some downsides to that. The quick test isn't as accurate as the longer examination they can do. Also, the patient wouldn't get to hear what was found and decide about whether to take out the rest.
They can't test a node before they take it out. So if they take out the SNB nodes and find they are positive, they normally go in and take the rest out.
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Last Friday, after tx 8, my breast was kind of tender and swollen and Saturday morning it felt sort of like a mild sunburn. It calmed down over the weekend - the swelling went down and the skin seems less pink. Things still feel okay after today's treatment.
I'm wondering what it will be like by the end of this week.
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Up until yesterday, my radiation site looked ok --- a little red but no discomfort to speak of. But late in the afternoon after treatment #21 yesterday, it started to get more red and little blisters were coming up. I had a miserable night ---- memories of childhood when I got severe sunburns at the beach. Oh well! I was hoping to get through this without the difficulties I had heard about but it looks like the next two weeks will be full of whining and moaning to whoever will listen -- mostly Buster, my chocolate lab, and I'm not sure he cares one bit!
Cora
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Today was #11 for me. It's looking a little pink, but that was in the appointment with teh rads onc and I hadn't put lotion on it yet.
The plan has changed a lillte--from 35 (unknown number of boosts) to 25 with 8 boosts, so 33 total. I was marked for the boosts today, too, and the tech did the tracing for the template.
The onc said he wouldn't delay the rads for LE, which is fine by me at this point. The swelling is goin down little by little, by the way. Not so painful, and I can move it more easily.
I usually spend Tuesday mornings in the office, but by the time I got done at the cancer centre, I would have had only two hours--so I came home to work from here for a while instead.
Not sure I like the rads onc...He was OK. It felt a bit rushed, is all. He did answer my questions, and wasn't rude or anything, just...not as warm-feeling as my med onc. Kind of, as I said, in a hurry.
How is everyone doing?
Hugs
Martha
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Marth, glad to hear you are doing ok! My radiologist isn't the best either. Oh, yeah, he's probably the best in the area as far as a good Dr. goes and has a fabulous reputation, but he is always in a rush, too. I wait forever on appointment day, for about a 1 minute visit. Not that I have much to say either.
I'm noticing my arm swelling a bit now, and it hurt and kept me awake all night. I'm just not sleeping well at all and it sure does mess up my days.
I'll plug through it, though. I'm just glad I'm on the down side of all of this!
Cora
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I'm so sorry to hear some of you are dealing with lymphodema, SUCKS! Hang in there ladies, by the time summer comes we will done with rads! I'm feeling tired and really surprised by that because I've talked to so many who didn't feel that way, but I could take a nap right now if my boss would let me! I have a sun poison type rash that's not going away, what's my boob going to look like by the end of the week? Yuck!
Make it a good day ladies!
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Sorry to hear some of you are having probs with the rads, what a bummer. So far I have had 10 of 30 which will include 5 boosts. No problems to date, the boob is not looking to bad - I'm using "My Girls Radiation Cream" plus Lily of the Valley Organic Aloe Vera Gel and hopefully that is helping. I am tired and I have nights of wakefulness but then I was never a great sleeper and it became somewhat worse after I went through menopause. LOL - not sure I will even notice if my fatigue is from rads or menopause.
Have a great day! Love to all.
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Well, I thought I was going to make it through this with no problems, but it has started!!!!! Yesterday I woke up and my left chest was beet red, full of little blisters, and the scar line is now white with peeling skin. Feels like a major sunburn. I went for my rad session yesterday afternoon and the girls looked carefully at it. They are having me see the Dr. today BEFORE another treatment to see if he will want to postpone it for a while. In a way, I hope NOT! I just want to get through this as quick as possible. I'm tired of it all.
PurpleME, I, too, am not sleeping at all. Just staring at the ceiling. The tylenol PM is not working anymore. I'm using the Radiation Cream, too, and thought it was working well all this time. I'm having treatment #23 today, so I guess I did pretty good to go this long with no problems.
Hope all goes well for everyone today!
Cora
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CindaD & Nelia - so sorry you are having the skin problems. I may be headed down that path before I'm done.
I saw the Rad Onc. today and found out some things. The last few days I had been feeling sooo tired, I felt like I was back on the Taxol, ya know that apathetic stupor kind of feeling...
She said the fatigue IS cumulative, and I am having whole breast, both sides, and have large breasts, so since they are radiating a larger field I would have more fatigue. I guess the larger the field, the more radiation your body has to deal with, which makes you tired. Ugh.
I had tx #16 today, so almost 1/2 done, and skin is holding up. But she's keeping a very close eye on my skin. She actually expects that I will have problems. The onc also said that sometimes the blisters don't show up till after treatment is finished, but that the vast majority heal up within a few weeks. Nothing permanent. And there are prescriptions they can give if necessary, lots of different ones, in case one doesn't work.
At least it seems to be going by fast. I'm having trouble getting to sleep at night too, but NO trouble taking a late afternoon nap!
Martha, so glad your arm is doing better. I do like my rad onc. It's nice that she's a woman, and very down to earth.
Kristi, Bluedasher, you doin' okay?
Love and hugs,
Jessee
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I had to see the radiologist first yesterday before my treatment, as the gals wanted him to look at the area. It's so red and some blisters are coming up. I'm having those hyperthermia (heat) treatments twice a week, and I really dreaded having that yesterday and had hoped he would delay it or cancel it because of the skin. But he said if I could, he would prefer I do it. So I did. It takes an hour with a hot, heavy thing on my scar site. Very uncomfortable, but bearable yesterday. I'm up to treatment #24, so I'm at the countdown. As I was getting off the table, the girls said that the dr. would be coming in today as part of my treatment and doing something --- drawing lines on me, etc. I really didn't catch all they said. I seemed to be in a fog and just said ok. The rest of my day was miserable. I slept through my favorite programs last night, then slept through the whole night. That was a first as I haven't been sleeping well at all. I think I slathered on a half a jar of the Radiation Cream before I went to bed. I'm beet red, but still just the same blisters that showed up initially. Underarm is starting to feel irritated some. I've never been so willing to go through something just to get it over with.
Hope everyone else is doing well!
Cora
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Nelia, I think the doctor was drawing lines to indicate where the "boosts" should go. The techs use the sketch to develop the template to focus the beam. My doc did that a couple days ago for me.
Lucky #13 today for me. A little pinkness, not too bad; a little itchy, bearable. My skin does seem to be a bit tougher or more leathery...not as pliable as it was. Hope that goes away eventually!
Hugs to all
Martha
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Jessee, I'm doing fine. Last Friday, my breast was getting kind of swollen and tender. Saturday I had a bit of that almost feverish feeling like after getting a sunburn and I was tired partly because it was hard to get to sleep. Fortunately, two days off over the weekend let it calm down so Monday it was back to normal except for a bit of pinkness. After yesterday, Tx 11, it is starting to get a bit tender and swollen again. Maybe it is a little bit more than it was last week at this time but not much.
I'm very fair skinned but my onc hasn't predicted whether I'll have a hard time with this. He said that fair skined people with an Eastern European heritage seem to have fewer problems than those with a Scandinavian one. I hope that's true since I'm the former. From what I've read, it sounds like a lot of the blistering problems show up after 20 or more treatments.
For the last few days I've been feeling quite energetic and not tired at all.
Martha, its day 12 for me so you are just one ahead. A little itchy yesterday too until I put on aloe vera and moisturizer. So far my skin feels pretty normal.
I've been told 30 treatments but the rad onc didn't say anything about boosts. Today is my usual day for seeing the onc so I was going to ask if the last ones are boosts, but yesterday they told me he is on vacation for the rest of the week. I guess I'll have to wait until next week.
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