August 2010...anyone starting chemo besides me?!
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Sweeney--How were your rad times? Were they consistently at the same time? Did you get choice? I have first rad next week and trying to figure out some stuff with the kids and some programs that I had wanted to join. They told me at my centre that I get the appts one week at a time--and you are within 2 hour block. Not sure how it worked for you. This everyday thing causes more probs with scheduling other things for sure!
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Ahhhh. Now I get it. Thanks JSW. I'm pretty high for ER, can't remember what it is but the doc said for sure I need Tamox. And I will go check out those other threads. thanks!
Rachel- I managed to get into Rads pretty regularly by asking for the first session of the day. Now I had to be there for 7:30am BUT I at least had some control over the rest of my day. Apparently very few people in Ottawa want 7:30am, but that could be b/c we have a lot of patients coming in from rural areas for treatment. I live really close to the hospital. But yes, it is a serious pain in the ass going in every day. And don't underestimate how much it will wear you down! I did. The travelling, changing, waiting, radiating, changing, travelling routine every bloody morning really did me in. So take care of yourself. I was telling people, "well, it's JUST radiation so of course I can do XYZ". Lies. But I didn't know it at the time. You'll get through it, but don't short change yourself in the taking care of me dept.
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Rachel: I concur with Sweeney, don't underestimate radiation. While it is physically much easier than chemo, going every single day really is a huge pain it the A** and the whole process really wears on you mentally. So, just be prepared that it may not be as easy as you think it is going to be.
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Thanks guys for the feedback. Luckily, I am about 5min drive from where I will be doing radiation so hopefully will be able to drive myself back and forth no problem. I am hoping for early morning so that I can be home when kids get home from school. I spoke to someone from my support group who also did radiation and she mentioned that it does take a lot out of you. It is strange--after feeling crappy from chemo--then having a month off and start to feel good--hate to think that you may lose this "newfound" energy again!
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I had my first Raqdiologist appt yesterday. Today I go back for planning and measuring and tattoos etc.Then seven weeks are to be set aside for this.
My radiologist told me something shocking yesterday.
50% of women are not compliant with thier antihormonal drugs. These drugs reduce your chance of recurrance by 11%, that is seriously significant. He said if there were knee pains those go away about 7 months after beginning. Hot flashes are difficult, yes? An 11% reduction decrease in recurrnace beats that difficulty for sure.
He said when I start those to KEEP TAKING THEM! He said women are dying because of this.
So I am sharing his message here. He is a friend of Melissa who started this message board. He was happy I like it so much here.
Peace Out
GInger
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Would tamox be concidered an antihormonal drug???
Def i am doing whatever the dr says to a T! even if it means adding 1 more day of life to how every many years i have left
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So just to add some extra confusion to my treatment plan--Back in September, I had the BRAC1 and 2 testing done due to family history and my own history. In Canada, this testing takes months due to some patent problem with the US company. The genetist had said that they did not believe that I would test + so to go ahead with radiation and chemo as usual. My radiation is due to start on Monday (already had simulation). Well....they call me today to ask me to come for appointment next week--I ask about results--they won't tell me over the phone. So I start thinking---hmmm.. what if I am positive, then I will opt for double mastectomy and then no radiation, so what is point of starting radiation? So I call RO office to ask them--they can see the results of the genetic testing but tell me Doc needs to call me. AARGGHHH.
I know that if I am positive, I would choose mastectomy as the gene increases your risk or recurrance--just sucks that everyone else knows but me. I already have had ovaries removed (another risk factor with BRAC gene) so just the mastectomy is what they may recommend. Hoping Doc calls me back because I'm not starting rads without getting this sorted out.
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Rachel I just wanted to say that is so frustrating and I hope the doctor will call you back soon. If it makes you feel any better I think that they want to see you in person to give you results regardless of if you are positive or negative. That is how the geneticist I saw did it. But it sounds like the bigger issue is that the results could alter your treatment plan so you want to know before moving forward with one plan. Hopefully the doctor or geneticist will understand this logic and call you back soon! But the bright side is that at least the results came back today instead of next week after you had already started rads.0
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Hi - I had a different experience with the BRCA testing - the genetics counselor sent me an email to say I tested negative, then later sent me the real results through the mail. I appreciated that a lot. I think sometimes genetic testing is treated delicately for some reason.
Rads - I had my tattoos and setup today. I really like my rad onc, she is great. She made me feel good about things and she told me that they use little dosimeter stickers to make sure you get the right dose, I was happy about that. 6 weeks, 25+5. Have my simulation Friday and start Monday. I am glad to get started with the rads finally!
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All home from lumpectomy and node dissection today at 2:00. A little sore, but glad to be home so I can rest. Things went well, except the rumor is I woke up fighting and tried to remove things that should not be removed. So far haven't needed anything for pain. They were very generous with nausea meds so I only had one "incident"
Lizzy glad you are doing better.
libray lil
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Glad you're home Librarylil. I didn't have much pain after my BMX either; I think most, if not all, my pain was coming from the blasted tissue expanders. Hope the no pain keeps up!
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Rads - I have had 21 treatments as of today. I just wanted to add that where I get mine done, they give you one time for the entire time. A few days I've needed to switch, but I just let them know a couple of days ahead of time and they are able to switch me. I will have 23 + 8 boosters (I start boosters on Monday). I live about 10 minutes from the hospital where I get them and I actually have been really pleased that it hasn't been a problem. I haven't gone back to my full schedule yet, but I have been able to do everything I've scheduled without any problem. My boob is pretty pink and a little itchy now. You're not allowed to scratch it, so I've been putting a little cortisone cream on it which helps. Otherwise - no problems at all. :-)
I will start on some version of hormone therapy after the rads. I'm still getting Herceptin every 3 weeks. (Can't remember who asked - Texas?, but on my Herceptin-only treatments I haven't noticed any se's at all.) I will talk with onc. about the hormone therapy at my next Herceptin. At one time, he had said that there was some evidence showing that Tamox wasn't as effective in Her2+ patients, so he may want me to have an ovarian ablation and take and AI. But, when I asked him about it as soon as chemo was over, he mentioned Tamox again. So, I will have to have a discussion at my next visit.
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Lisa - The rad onc said to pat the miaderm on when I start rather than rub it. I hadn't thought of that. I didn't feel so good after herceptin yesterday, I had a slightly elevated temp and this morning a bit of diarrhea, but now I am fine. I expect the next one I hope I don't notice anything! I am now 52 but was having regular periods before all this, my doc is recommending tam for a year before the AI. He didn't say anything about tam and Her2+, I'll have to ask about that. Can't believe you are just about done with rads!!0
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Oh Rachel!! What a pain for you to have to go through this waiting and unsure period. Sorry. Really sorry about all that. I hope you get your answers quickly. I'll be thinking of you.
Tex- yes, I'm pretty sure tamox is classified as hormone therapy. So far though, (now granted these are early days, I've only been on it two weeks), I have no SEs.
Lisa- good luck with the pink boob! I used calendulum lotion and it was really good. You can get it at any natural health store.
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Libraylil: Glad you are home and feeling okay. Very happy to hear that the anesthesia side effects weren't too bad.
Rachel: Sorry to hear about the new wrinkle in your treatment plan. Can you just delay the start of radiation one week, until you get your BRCA results? I think it is better not to have the radiation if it is not necessary. And on the fatigue, if you do start radiation you will still have your energy for a couple more weeks. The physical fatigue didn't begin to set in for me until about four weeks in. Much more of a mental battle at the beginning, and a pain fitting it into a busy schedule.
Texas: I am with you..I am doing what the doctor tells me is best, no matter what. Hopefully all of our side effects on Tamox are minimal if any.
Lizzy: Hope you are feeling even better today! That wound sounds gross, you must be very strong to be able to even deal with that!
I had my follow up breast MRI today. It wasn't nearly as terrifying as the first time, thank goodness! I meet with the GYN tomorrow for my biopsy results, thanks for all your good wishes. I am sure everything will be fine, except that I am getting really angry that I am still spotting!!!! I really do wish this would stop already! I meet with my oncologist on January 18 at which point he mentioned he would prescribe Tamoxifen.
Good night everyone. Have a great day tomorrow!
Debbi
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Good evening chemosabes and radicals-
Rachel: don't start rads until you get that sorted out. It is ridiculous to subject yourself to something that most likely will become unnecessary in light of a positive BRCA and subsequent mx. I would not be worried either. The waiting is grueling, however, and there is no reason some patent bulls*&t should hold up a bc patient getting BRCA results. That is a cruel and unusual side effect of capitalism and couldn't this be ameliorated under NAFTA? It is not like there is a negligible profit margin on BRCA testing. I hate to always come down on the capitalism side of things but it has so much to do with what goes on in the US and our healthcare. Tell your RO you are going to wait until you get your results before starting. There are facets of our experience as bc patients that are handled very well but when I am upset, in any way, by a process I am drawn back to the idea that bc patients are already going through enough. More to this point, I am a little sensitive when we are pushed around by the system. May you get your answers soon, Rachel.
Sptmm: The wound is gross! On spotting, when I was in the hospital I started spotting. My last chemo was Dec 7th but I am not done yet as they will administer #6 as soon as the infection area is at the point where my body can tolerate chemo. In any case, this is why I am spotting and also why I am going to be a basket case once I do the next chemo and go back into chemopause. Good luck with the gyn tomorrow and your results. I am sure you will be fine but I am looking forward to hearing the good news just the same
Libraylil: glad you are home and *that* is over! It feels so good to put this stuff behind us. I am happy to hear it went well. Congratulations on reaching the next level!
Several flavors of tired: I was ready to get down on myself today because I am tired, tired, tired all the time but then I realized I had 5 txs of chemo while a major infection was boiling just below the surface. I then ran a temp up to 103.5, was hospitalized for 7 days, had (emergency) surgery to remove the infected TE on NYE and have been home for 2 days. What do I expect from myself? I am tired. This last 4 months was a lot to go through especially now when I know my body was badly infected during chemo. Also my breathing is not as bad. It turns out the infected area was so swollen it was pressing against my lung cavity and my heart was also racing so I don't know if it was pressing on my heart chamber as well. With the slightest activity my heart was racing and my breathing was very labored. Now I am tired but sort of like "I need rest" tired but not " I can't go on" tired. It is a different kind of tired. I did get to 2 stores and the bank today, did 3 loads of laundry and had a wound nurse and a VNA nurse visit me at my home today. I also took a shower so although I am sleeping, I think that is my body just catching up with what has happened. Otherwise I am getting some stuff done.
I should go grocery shopping but I don't know what to buy anymore. The VNA reminded me beans have lots of protein. When you all make smoothies do you just toss various fruits in the blender or do you add milk/water or a smoothie mix? Any info is appreciated. I think I am going to move to smoothies and keep on with Boost. I don't feel like eating anything and I am also on Augmentin which causes stomach upset.
Well, the Nets are beating the Bulls and I need to rest myself before I have to navigate that man-made orifice where my breast used to be and pack it with saline soaked gauze with the assistance of a tongue depressor! Well, I am only pretty sure I have the stomach to be a nurse after this gauze removal and repacking business! I cannot believe I am actually sticking my fingers inside of my body to do this....woe is me, girlies!!!!! I am getting used to it, however.
Have a lovely evening and sweet dreams to all-
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Lizzy - It is a rather diabolical intro to nursing! I am still trying to picture it, is the pocket between the skin and the chest?? Ouch wherever it is!
Smoothies - I do plain nonfat yogurt, frozen blueberries, banana, a little honey. Sometimes sneak in a carrot.
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Lizzy So glad you had a nice hospital stay but sorry about the wound. Don't judge your ability to be a nurse by that, it's much harder when it's your own body. Hopefully it will get smaller and heal up quickly. For smoothies you can use yogurt, or milk and ice, or icecream mixed with whatever fruits you like. If you're on painkillers be careful about using too much banana b/c they can be constipating. You can also add some peanutbutter for protein. Maybe calamitykel will have some ideas for other things to add to increase the protein.
Lisa My onc is planning to start me on Tmx and I'm her2+ also. I'm going to ask about it when I see her on Friday and I'll let you know if I hear anyhting different.
Hope everyone has a great night! I'm off to sleep.
Carolyn
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I had rad. #8 today, started getting pink last night.This week I have not had the fatiuge I had last week. That could have been from the minor cold I have, not sure. After herceptin and rad. tomorrow I leave for Mayo clinic in Rochester, MN for a reconstruction consultation Fri. 7:45 am. I am hoping to have DIEP. Happy to be heading to the finish line. I do have to have herceptin until Aug. But I do see the finish line. My radiation I set up for 4;00 pm everyday, I have continued to work all through tx missing only 1 day due to not feeling well other than that I have only missed for appointments and even then I try to have them late in the day.
Hope you all have a happy and se free rest of the week. Hugs and prayers to all!
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I asked the med onc nurse about sleeping and she suggested 3mg melatonin with an anti-histamine of the old type that make you drowsy (benadryl or such). She said the combination of the two works well for some people and might be strong enough to help me sleep through some hot flashes. I am giving it a try tonight.0
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Hey all - I go for my ultrasound tomorrow on this little thing on my collarbone.
I went from being totally fine today to spiraling myself into worry tonight. I keep thinking, maybe the CT just didn't pick it up in august....it's not painful, and that's not good.... and yes, I can find it - I've discovered if I put my arm up, it sorta pushes it out from behind the collarbone. From what i can feel, when it's not slip sliding around, it's really small - hard to tell how small-maybe the size of an eraser?I keep thinking, what if it was there and chemo shrunk it and now it's small but not gone. Will the ultrasound be able to see if it's small?? And what will the ultrasound show? What if it is cancer?? Does that mean it's in other hidden LN's? Why do they take out your lymph nodes to get rid of cancer if chemo can eradicate cancer? What if it is - then what? more chemo?? radiation? I need to move my freakin' oncologist in with me so I can ask all these things! She seemed SO SURE yesterday. But nothing I read about a slippery lump that is a proabable LN at the collarbone is a good thing! WAHH!!!!!!
I guess I will have no answers until Monday at least - my app't isn't until 7 tomorrow night.
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CALAMATYKEL - I don't post hear often but I also started chemo in August and I read this thread from time to time. I have ILC but also had 2/12 nodes with a small 0.9cm primary tumor. I totally understand freaking out even after having your doctor's reassurrance. I wish that I could help stop the stream of unanswered questions. I think that the ultrasound will able to pick it up as long as you position your arm so that it pops out. I'm so sorry that you will have to wait over the weekend for the results. I think that currently nodes are removed more for staging purposes and to help determine if chemo or radiation is warrented. I don't think that they take them out to rid our bodies of cancer. I will be thinking positive thoughts for you.
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toomuch- thanks. Yeah, I 'm totally confused. What my oncologlist said was "even if it was, the chemo would have gotten it - that's why we did chemo." That just doens't make sense to me. Because when someone has cancer, they remove the tumor surgically....in the breast.
I don't know. I guess we'll find out, hopefully!
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Cal - could it be a little lipoma? I have one of those on my side.0
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omaz--I'm praying that it is!
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Phew! Finally got caught up reading several pages of posts.
calamtykel - sending lots of positive thoughts your way that you hear good news soon!!
Sweeney - I also have found myself having less hot flashes since I've been on Tamoxifen. I've been on it about 6 weeks and so far no noticeable side effects. I still get the occasional hot flash but it's more like once or twice a week where it used to be 6-8 times a day!
My hair is continuing to grow. It's coming in thick and even which I'm happy about, now I'm just waiting for length. Looks a lot like Sweeney's avatar. It's coming in my normal brown color but I still had some weird chemo gray mixed in so I colored it last weekend and it worked great! I used Clairol Natural Instincts, it's non-permanent/ammonia free and is really gentle on your hair. I'm not quite to the point where I can go out in public scarfless/hatless but it's getting close. I can't wait!!
Unfortunately, the eyelashes and eyebrows I'd been so happy to keep fell out at about the 8 week mark. My eyebrows have thinned a lot but I still have some and I lost just about all my eyelashes but they're growing back evenly, just really short still. I just can't wait to look and feel somewhat normal again!!!!
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all Today our local newspaper reported that Elizabeth Edwards cut her estranged husband out of her will. Her daughter Cate was named executor and everything went to her 3 children.
Lizzy glad you are up and about. How's the weather.
IowaSue hope in the next few weeks (soon as mr. drain is out) to meet rad oncol and get the ball rolling. Lisa I can't believe you are finishing rads. Since we are both triple positive it will be interesting to see what my onco says once my rads are over. I get the feeling from him that the biggie is to treat the HER2 factor. Will we take the Tamox (or whatever) along with the Herceptin/one year?
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Librarylil Glad to hear you are home from surgery and doing well. I ended up not needing to take anything for pain after my lumpectomy either, I just felt tired for a few days and of course the soreness in my arm from the node dissection. Mine was on my right side and I am right handed so I had to try to do things left handed for a while and discovered that my left hand is really not coordinated!
Lisa and Omaz I am also triple positive and had not heard anything about Tamox being less effective in women who are HER2+. I will be interested to hear what your oncs recommend for you.
Lizzy Two of my favorite smoothie blends are: 1. milk, vanilla yogurt, frozen strawberries, and vanilla protein powder; 2. milk, peanut butter, and chocolate protein powder (also good with some ice cream added in). You can experiment to see what you like, different amounts of milk, yogurt, and ice cream will give various thicknesses so you can customize to your taste.
Cal I also think that they remove the nodes more for staging than to actually remove all of the cancer. I recall reading in the New York Times a few months ago that compared women with a positive sentinel node - half had axillary node dissection and half did not and outcomes were the same. Here is the link to the article: http://www.nytimes.com/2010/06/08/health/08canc.html?_r=1&scp=1&sq=breast%20cancer%20lymph%20nodes&st=cse. They also reviewed that research here http://www.breastcancer.org/treatment/surgery/new_research/20100608b.jsp. So I really do think that if your node was cancer it would have been hit by the chemo.
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Lizzy- here's what I do for smoothies and I have this twice a day. Mostly for alll the fruit it offers me.
1 small scoop of protein meal replacement powder (like slim fast- lots of vitamins and minerals in there)
1 cup of 1% milk
2-3 cups of mango, raspberry and/or blueberry (I always use frozen....it's just cheaper and fresher).
Then I whip it up with the hand blender, and it is the most awesome smoothie ever. The mango thickens it, but if you like them more liquid-y then just add more milk.
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Trader Joe's carries frozen mangos and berries. Their wild blueberries - the tiny ones, are AMAZING!!!
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