Chemo starting October 2017
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Petey For that area lie on opposite side, with fan blowing on the skin to dry it out. with it being a skin on skin area u have to get it to dry out. Laying on ur side helps to get that area exposed to the air. Hope this helps
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Lately, I've ditched chemo caps in favor of baseball caps, though around the house, I'm going commando. In fact, just today a Duke Energy guy knocked on the door and I answered it without a hat on. Didn't even realize it til I looked in the mirror. I don't know if that's progress or me just not giving a shit anymore.
Sara, glad you found some useful information in your survival conference. I might consider going to one now.
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I am so tired of wearing something to cover my head. Husbands friends, who I met once probably 13 years ago and their kids stopped in this weekend on their way to the beach. I was on my worst chemo days and I just didn't have the energy to worry what I looked like. Never put anything on my head. Regreted it after she put a picture of all of us on Facebook as her cover photo.
As usual, been pretty tired in day 3-7 post chemo. Although it's mixing with anxiety now over upcoming BMX.
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Petey, having had such serious burns from radiation, may I suggest you also keep the painful areas as loaded with Aquaphor as possible. You might want to consider keeping all affected areas as moist and supple as you can rather than letting them dry out. I felt more painful cracking and breaking of my skin when it got dry. That's where I have the most stabbed over areas.
Just another confusing opinion...I know.
And ladies, I'm proud of all of you ditching the headwear...I'm dreading the warm weather with a wig as I run several outdoor music festivals and am working with people who've always for some dumb reason been very attached to my hair. Go figure. I need a snappy comeback line ... I've told only 3'close friends and my 3 kids and my two sisters about my BC...cuz no one knows what I dealing with and why I have nearly zero hair...and its silver, not reddish brown. Eek!!!
Such petty stuff to worry about, and what a welcome change, huh???0 -
I ordered this last week from Headcovers and quite like it. It's cotton, which will work much better as the weather gets warmer, and it's very soft.
https://www.headcovers.com/tenley-baseball-cap/
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Lisa - that hat is really cute. Have been wearing Pom-Pom stocking caps most of the winter but they are getting to warm to wear - even in Minnesota.
Still a couple months out from going commando so I think I'll go for this.
Thanks for sharing
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Lisa that looks great!0
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Cute hat. I have an UA women's soft blue baseball cap I found on clearance at Kohls, that is my go to hat until I don't look like a kiwi anymore.
Met with RO this morning and the thought is no radiation is recommended unless anything is found in my lymph nodes at surgery or pathology. Both MRI's I have had, didn't think I had any lymph involvement.
So still on for BMX with expanders placed on April 10th. Oh and I am getting de-port-ed. Anyone else getting their port out soon?
Tomorrow I go to the medical supply store to shop for post mastectomy garment (cami's). I have been reluctant to buy any bras for a while, not knowing what size I will end up at. I know I want to go smaller than I am (D chest), as the end result. But PS has not had the "pick out my boobs" conversation yet.
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Jennifer - Good luck with your planning and preparing for surgery. It seems like your getting all the ducks in a row. I'm sorry about the Facebook thing - it would bother me too to be surprised by a post like that. However, judging from your "last chemo" photo I swear you look really cute right now so I bet you look great.
It's funny that we're all talking about head coverings again, just like back in the fall. Now that there are random sprouts of hair on my head I am a lot more self-conscious about going out uncovered, especially with being lashless on top of it! When I was smooth-headed and had lashes I went out bald all the time without a second thought. These days I definitely cover up. I hope I get some hair growth by the time it starts getting hot.
Yesterday I met again with the radiologist. She decided that since my tumor was far to the outside (9 o'clock position on right side) there wasn't much chance that cancer cells traveled to the internal mammary nodes near my sternum. I don't need to have those (or any) nodes irradiated, thank goodness. That means I'll be getting 16 sessions of whole breast radiation + 4 boosts. I'll be on my stomach so the tattoos will be on my side and back. I go in for my simulation on the 5th. Start radiation a couple of weeks after that.
I'm a little nervous about the skin burning from radiation. The RO did say that since I don't have much sun damage that works in my favor (I joked that my being a punk rock teen 40 years ago is now paying off -- we wanted to be PALE!) I need to start intensively moisturizing at least twice a day now. Nothing with lanolin - didn't ask why.
Any of you guys that have been through radiation, just how uncomfortable can the skin get? Are there times it's so bad you can't wear a bra? There's no way I can go to work without one! Unfortunately since I wear a 42G bra size I don't fit into those cute little cotton camis people recommend.
Okay - off to moisturize!
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Agatha. I’m done 16/16 whole breast and 1/5 boosts. My skin just started to turn pink yesterday. It’s not too uncomfortable at all. I try to moisturizer 3x a day, drink lots of water and eat protein. My skin is a lot less impacted than I thought. I’m grateful. Now. My RO said things can continue to progress for 2 wks after the end of treatment so we will see how that goes.
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Joyseeker Congratulations in finishing rads! That's a major accomplishment for sure. And I'm very envious of all of you who can go straight through without having to take a break...something I had to do with both chemo and radiation. If after all this agony I don't have a good outcome I'll certainly know why.
Agatha, I've not had good luck with my skin but taking a ten day break made all the difference for me, and tonight is finally the next to last treatment. Ahhhh...
And, weird as it seems, I'm having more than a few uncomfortable feelings about not being in ongoing treatment...such as "where's my security blanket" feelings. As scary as this whole ordeal is, there's something oddly very comforting about seeing a doc every week or so and being in constant phone contact. My paranoia is taking over...is there nothing more they can do? Or do I just live in limbo from one six-month scan to another?
Maybe there's a forum on this site for those with mental/anxiety issues like mine?
Actually, I am in control and don't let these thoughts take over, but I sure can't deny I've had them from time to time.
Anyone else going through this type of separation anxiety?0 -
Oh Tewks. It's not really funny, but your descriptions of it are!! I feel for you and empathize! Aquaphor is on my list. That and aloe are the only things I've invested in yet. I'm waiting until tomorrow though to buy some because I'm secretly hoping the doctor will give me samples and I won't need to buy it! I'm cheap.
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Hi, Tewks. I totally get the post-treatment feelings you describe. I'm going through major separation anxiety, especially from my MO since I had been seeing her every two weeks for months during chemo. I felt disappointed and relieved at the same time when I found out that I wouldn't be going on Xeloda or going into a clinical trial after radiation. Maybe it's a TNBC thing since we have limited options? In another thread I described it like a wounded animal being released back into the wild after being treated. I'm not sure I'm ready to fend for myself yet!
Thanks all to responding about the skin issues. I'll just wait and see. I don't want to start buying stuff I don't need like I did before chemo!
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I know how y'all feel about anxiety about recurrence. It's no fun wondering if every ache and pain is a metastasis. Remember that for the vast majority of us, the odds are strongly in our favor, and each year the odds are improving.
To put it into perspective: Each year more people in the US die of heart disease in the United States than all cancers combined. Many are seen by a doctor regularly, are on high blood pressure medicine, and have their blood pressure monitored constantly. Are people on HBP medicine filled with angst, wondering daily if they will be around in 5 years? Most do not. But for some reason, cancer is unique in its ability to scare the bejesus out of us. Let's try to not give in to that fear and let it rule us.
IOW, think of yourself as having a serious disease that is being treated, just like people who are living with heart disease or diabetes, and who are living a full and rich life. Take this as a wake up call to make lifestyle changes that will improve your chances of living longer...which just so happens to be things that everyone should be doing anyway, such as eating good foods and exercising....and then go live your life.
From Susan J. Komen website:
"In the U.S., most people diagnosed with breast cancer will live for many years. Today, there are more than 3.5 million breast cancer survivors in the U.S. (more than any other group of cancer survivors!)." '
P.S. Susan Komen website offers up a support hotline if you ever feel that your anxiety is getting the best of you.
Good night, ladies.
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Lisa, those are very helpful and comforting and very wise words. I feel confident that I’ve gone to the best hospital, have the best drs I could research and find, and I’m down to my last radiation tomorrow with the most cutting edge treatment available.
How much more fortunate could I be? I can’t control my diagnosis it but you’d better believe we sure can control the way we tackle it.
And I thank god every day that I live where I do and have the best treatment within reach.
So from this point forward you’re absolutely right,I’m not giving in to the fear. This has to be nothing more than a major speed bump and we can all get past it.0 -
BTW, for all the TNBC ladies, I get updates from TapImmune, the parent company of the BC "vaccine." Although the sample group was very small, early trial results are very promising. (Some people on this board are actually part of that trial.) They are trying a method that bolsters your own immune system so that it can fight off recurrence. This is just one of the many new drugs in trial that may well improve our odds even more.
http://clincancerres.aacrjournals.org/content/earl...
BTW, I changed my name to LisaCincy instead of LisaRxCincinnati because it was too long. Also, I changed my stage from 1A to 1B, which is what I'm staged at after the new 2018 staging guidelines.
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Lisa - You always have good advice for us. Thank you. It's funny because I looked at your name and thought...it's different. It had an Rx in it before! LOL
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Good morning, ladies. It's my 52nd birthday today. My husband gave me a card that wishes me the best year yet. I extend that wish to everyone here. I've already been blessed with some great gifts this week:
After 4 days of steady rain, nature has gifted me a beautiful, sunshine-filled spring day. How awesome.
Last night, I slept well without the aid of medication for the first time since coming home from surgery. I'm happy to say that the foot neuropathy and sciatica issues have been resolved, but I still couldn't find a comfortable sleeping position with my new boobs and chest trauma. Last night, I was able to finally sleep comfortably on my side all night and I'm hoping that this marks the end of the insomnia!
I met with my MO NP for the first time since surgery on Wednesday. She was very happy with my biopsy results, and was very optimistic for my future. And she gave me to green light to get my port removed on Thursday. Yay!
On Thursday, my husband and I booked a 10-day Trafalgar tour of Southern Italy in June. Going to Europe and seeing the ruins and Pompeii has been on my bucket list for years. I gave myself 2 months to prepare for all the walking it'll require. We started with a 3-mile walk in the rain yesterday, and will leave in an hour for a hike in the woods.
My daughter and SIL are coming in today so we'll have the whole family together for my bday today and Easter tomorrow!
I've been driving my BIL to radiation on Tuesdays and Fridays. He still cannot drive himself because he cannot do the procedure without Ativan. Anyway, after just 3 weeks of radiation and 1 bout of chemo, his tonsil tumor is almost gone! His oncologist said that treatment beyond next week will probably be overkill but that the data hasn't been compiled yet that would allow him to end treatment early. I know that the next four weeks are going to be rough on him, but I'm confident that he will be free of cancer after that.
Tonight we will gather for dinner to celebrate my birthday and my SIL's mom's good MRI following her stem cell transplant. It wasn't a perfect result, as she still has ~13mm left of what was a very large lymphoma, but the neurologist is positive that they can easily attack what remains with a one-time Gamma Knife (radiation) procedure. Her prognosis was 4 years and now there is no reason she cannot live a normal life. So woot on 2 moms beating cancer's ass!
Have a great weekend, ladies!!
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Lisa, Hugs and congratulations from NJ!!! You must be flying with such good news, good news for everyone in your family. You really did it!!
I finished my radiation treatment last Wednesday...yahoo!! And I’ll see my MO this coming Tuesday to hopefully start back on Femara. I’m thinking she will also want to do a bone scan so am psyching myself for that.
Have a great trip to Italy, it sounds like such an amazing gift after all you’ve been through. And thank you for all the support you’ve given me the last weeks.
Happy Birthday!!!0 -
Thanks for the hugs, Tewks. And congrats so much for finishing rads.
Hubby and I just got back from a 4 mile hike followed by lunch. 68 more days til Italy!
Also, just curious and don't answer if I'm invading your privacy, but why were you on Femara? My understanding is that it's for hormone positive cancers only, and your profile indicates you're triple negative.
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HAPPY BIRTHDAY, LISA!!!
HAPPY EASTER AND PASSOVER to all who celebrate!!
Lisa - That's great news all around that you shared. I know what you mean about that first good night's sleep on your side... it's so magical. Good news about your BIL. A dear friend of mine had advanced cancer in his throat about 8 years ago but after treatment he is free and clear and healthy. I hope the same for your BIL. And your SIL's mom, too. I hope every last cell of her lymphoma is finally out of her soon. I'm so envious of a trip to Italy. I've only ever visited Rome and northwards - it's a dream of mine to see Pompeii, too, someday.
Do any of you other guys have bucket list goals that you are going to work toward now that we can see the end of our treatment coming closer? I want to see the Northern Lights, visit Quito, and learn to tango :-)
Tewks - congrats on finishing radiation. I'll need your encouragement and pointers as I start out. My simulation is Thursday.
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Hello Ladies- I'm so happy we are all doing well and reaching the end of our treatments. I started radiation this week and have 5 treatments done already. It definitely goes fast! I haven't had any side effects yet thankfully. I am 4 weeks PFC and have muscle pain in my legs and joint pain in my hip on my left side. Unfortunately the effects of chemo just continue 😑Happy Birthday Lisa and congratulations Tewks for finishing rads! My wonderful inlaws are taking my husband and I on a cruise this summer. My MIL said it is a celebration for everything I went through. She is such a wonderful person. I don't know how I would of made it through this without the wonderful people in my life. Happy Easter and Happy Passover
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Lisa, I’m NOT Triple negative...thanks for pointing that out 😊😊😊 major oops!!
The Femara is definitely for us positives, and I was on it for tumor reduction which it did very well.
Italy...sigh...
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Happy Birthday Lisa. Sounded like you had a great day!
I am so wanting to book a vacation. Thinking either SC beach or Pigeon Forge. We haven't been to either except Myrtle Beach. We use to live in NC and I am very familiar with most of their beaches but we haven't explored much of SC since moving here 2 years this summer.
I just don't know if I will be able to get into pools this summer? With surgery in 10 days and I assume my exchange to implants will happen around late June/early July. I would think pools will be out of the question for weeks after each surgery which is pretty much all of summer.
I haven't had any emotional let down reaction to finishing chemo. Happy to be done. But more emotions to upcoming BMX. One day I am crying (scared) and the next I am completely strong and positive about it. Physically I am feeling pretty well. Still nap on most days. Last night was the first night I haven't taken Ativan in a while and the night before I took .5 mg less than usual. Trying to wean myself off sleep aids!
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Agatha, Thanks. Seeing the Northern Lights is on my bucket list, too. Also, going to the other 3 major tennis tournaments (been to the US Open), taking a summer to see the National Parks via a VW Camper, seeing the Grecian Ruins, and going on an African safari. So much to do...and the rest of my life to do it!
Tewks, So you're triple positive? I was wondering why you'd indicated a Grade 1 (which is rarely seen with TN) and why they were taking their sweet time treating you. Now it all makes sense! (If you want to correct it, scroll up to My Profile, then My Diagnoses, and press Edit. Then change questions 11,12, and 13 to the appropriate answer.)
Jenn, You are correct that you're not allowed to immerse yourself in water (baths, hot tubs, oceans, lakes) for a minimum of 6 weeks after surgery. If your surgery is like mine, you'll have surgical tape and glue holding your chest incision together, and they don't want to risk any bacteria entering your body via this incision. You're allowed to shower and let the clean water run over your chest, but that's about it until you're released from your BS/PS.
I'm not sure how long of a recovery you'll need after the implant/TE. Hopefully it'll be less than a full 6 weeks. I'm sure someone in the reconstruction threads will know a lot more.
Please don't stress about the surgery. Even though the recovery is going slower than I imagined, I've been almost fully functional for several weeks. I can drive, work (in theory), go out to dinner, be in a crowd without worrying about catching something. I don't have my full range of motion, so no tennis or golf yet, but I can walk and do a recumbent bike. And, or course, no swimming/bathing, but I promise that it's quite bearable. And if you're nervous about the surgery itself, unlike most of the treatment we've done so far, you'll be completely asleep for it. You will experience soreness for months, I won't lie, but very little outright pain, as you'll be able to treat pain with narcotics. (I was off narcotics within a week.)
Maybe I'm odd, but even losing my breasts wasn't a huge deal. One less thing to worry about. To be completely honest, having my boobs removed wasn't nearly as traumatic as losing my hair. (It ALWAYS comes back to the hair, doesn't it?)
And, remember, surgery is hopefully the final step to being cancer free!0 -
Hi, everyone. I hope you enjoyed the holiday weekend.
Not a lot to report except that the teeniest little eyelashes are starting to appear. Very exciting!
I have a job interview on Wednesday. I'm not going to feel that confident going in with no brows and lashes and a wig but hopefully I'll forget about that stuff once we start speaking about work. Do I mention to them I've been in cancer treatment? I guess if it comes up....
Thursday is my radiation simulation. I may take a Tai Chi class at the hospital before hand.
Have a good week, everyone!
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Agatha, you don’t have to bring it up nor do I believe that they can they legally ask. However, the sad reality is that having a cancer patient on their payroll may cause their health insurance premiums to rise, esp if they are a small company, so they may not hire you as a result. So I’d try to mask any indication of cancer if I could and not mention it if it’s not glaringly obvious.
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Agatha, my husband and I have a consulting business and are very well known in our area because of the very public position I have. It was suggested by my drs when I was diagnosed more than 18 months ago that I keep my condition quiet because, nasty as it sounds, people do shy away from cancer patients. When it comes to hiring it's very common to wonder just how reliable we are and, quite frankly, are we a good investment, are we going to be around?? Will treatment get in the way of job performance? Are we terminal? Etc., etc., etc.
Aside from cancer being a PITA to live with, it's also a PITA to hide. I'm more fortunate than most because I work from home so many times, just like right now, I can sit in my bed at 9am and email, text and phone away, and no one's the wiser.
There are several people outside my immediate family who know, one of whom I work with. But I've known him for 20+ years and he's totally trustworthy. Plus, he didnt hire me.
On a somewhat similar note, I'm doing a slow panic here because I produce a major outdoor festival in August and my hair still isn't growing. I was really counting on having it by then and just passing it off as a new haircut, which I've been threatening to do anyhow. But here I am, 5 months out from my first and only Taxol, and I have barely 1/2" of growth. Almost too little to ditch any kind of head cover at all...oh yea, it's shiny silver and the whole world knows me as a sorta redhead.
I cannot fathom wearing a wig for 18 hours in 85 degree heat. And I can't imagine going out in public looking like I do now. Everyone will know, and I mean everyone... and like I said, I'm working on a full blown panic attack.
So...any one of you who wants to screw my head back on right and help me get my priorities straight...have at it. I'm kind of at a brain freeze trying to figure out this one. And I'm not at all liking myself for coming across so shallow, worrying so much about outward appearances.
I never thought that losing my hair would have such a profound effect. But it does.
So...I guess this is just my very long-winded way of saying "don't ask, don't tell." I'm not sure I'd risk letting a prospective employer know. And if someone mentions your wig, well just pass it off with a casual comment that you find it sooo much easier to wear a wig than deal with a bad hair day.
That's my advice for you...don't know if I could do that myself, but it's probably the right thing to do.
Anyone else have a thought??
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Here I am so wrapped up in my own appearance... I forgot to wish you good luck!! With both the rads and the job interview too!! Let us know how it goes? I'm real curious now
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Agatha - I hope it went well! Let us know.
Tewks - I can understand how you feel a bit. I don't have to be outside running a huge festival, but I have to teach this summer and I am sincerely hoping the Nioxin I just got will help me out!! I don't think it's shallow. It just means we are moving to a different place in our surface worries and stresses. It's not like you don't understand the more serious worries that exist. (Incidentally, one of my posts to you was really out of order. It was referring to something you had said in a funny way...I think about hair...but it ended up after a serious post you made that I think I must have missed or we were posting at the same time. So sorry if that came off all weird when I said it was funny!)
I have been reading a lot and not posting a lot. I just didn't have much new to say. My breast is a bit tender and tiny bit irritated in the crease on the side but other than that, I'm doing good. Energy is coming back. Taste is coming back. Still have a little neuropathy. Still having hot flashes and haven't had a period....but other than that, I'm good. I'm going to try the Nioxin for my hair and hoping that works. I am not motivated very well to eat and exercise. It won't stop being cold, snowy, and gray. :-( I'm trying to find some motivation to do that. I know it would help to move more. Tomorrow I'm going to volunteer at my son's school though and that will get me out and moving a bit. Then I'm going to hang out with my girls and watch a movie at a friend's house. I'm sooo looking forward to that!
On a probably unrelated note - Does anyone have suggestions for how to heal a cracked corner of the mouth (outside...like where the top and bottom lip meet)? Mine cracked and I can NOT get it to heal!
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