Radiation recovery
Comments
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run free, I was so sorry to read about your sister's possible diagnosis. Bad enough to have bc yourself, how hard to think of it in someone you love. I don't know if this will help, but I had 4 false positives in my MRI after I was first diagnosed by ultrasound. I had 3 of them biopsied, all negative. Hoping this is what happens in your sister's case.0 -
run free, I was so sorry to read about your sister's possible diagnosis. Bad enough to have bc yourself, how hard to think of it in someone you love. I don't know if this will help, but I had 4 false positives in my MRI after I was first diagnosed by ultrasound. I had 3 of them biopsied, all negative. Hoping this is what happens in your sister's case.0 -
Susannah, thank you, that does help! The weird thing here is that they did the MRI first. They did a mammogram last spring and didn't see anything. So she has that chaotic data you get from an MRI but not anything specific that they knew to look at. Did you have MRI-guided biopsies, and were those more icky than the regular kind?0 -
RunFree, I'm so sorry you have had such news today.I'll pray for your sister.I know this is true about how everyone deals with their cancer /treatment/diagnosis/and finally recovery differently.We all want so desperately to just stay as normal as possible but it really changes our lives forever.I felt like I was just in a kind on automatic pilot.Doing the minimum that I had to get through life.But now I have kind of just woke up and realized how little I really did do around the house and now I have my energy back I can start picking projects to work on on my days off.
Kate, I'm hoping you got to see your team of dermatologists by now.And how about that leg? How's it doing?
Cindy, Janis glad to hear you liked the kitties.Cindy my mother in law has a golden retriever.His name is hank.He's a sweetheart, loves his tennis balls.But he has really gotten overweight lately.They don't walk him and he loses the tennis balls so doesn't get played with enough.
I had about her horrid day at work.Go Figure!! I had like 16 bone densities and half of them no benefits because I had 18 on Monday and still the lady in the phone room didn't have time to do her job and my benefit.So my manager was on my butt all day about if my benefits were getting done and how we can FInd a way to get them done .Then when I told her with as many bone densities as I have had that I can't get it all done in 1 day.Her response was how long does it take to do a bone density?
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Josie, they continue to ask you to spin straw into gold, then ask why you can't do it? Naughty, naughty managers. Coal in their stockings, if they are lucky.
I wrote a longer post (twice), lost it, and will try to send just this little bit.
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Josie I am sorry you had such a bad day at work. You can only do so much and they certainly should be more understanding. I hope your work days improve for you. Hang in there!
RunFree I am sorry to learn of your sister's scare, but it sounds like they are being very thorough and that in itself is encouraging. My sister is an RN and my diagnosis was a wake up call for her. She has always had regular screening mammograms every time they call her back for a repeat. The second time around they notify her it is normal. After my diagnosis she went to her doctor and said the wanted an MRI rather than a mammo. Her doctor agreed, and although the MRI was more uncomfortable she was given an all clear afterwards. It was worth the peace of mind, and she will continue to have an annual MRI. So often we get these scares, and they turn out to be nothing evil. My sincere hope is your sister will get a clean bill of health after all this. I have a good feeling about it!
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RunFree, so very sorry about your sister, who is so very lucky to have you to explain it all, and defuse her fears and preconceptions. Yes, the MRI biopsy is more involved. Rather than watching the biopsy on the ultrasound screen, they need to take their images, place a grid over the images, place a matching grid over the breast, take more images to be sure the two photos gybe, then take vacuum assisted biopsies, then another set of images to be certain they were in the right place. Because of the MRI magnetic field, the vacuum thing is the only kind of biopsy equipment they can use. The procedure is rather grueling, if only because, due to the mapping process, you really cannot move at all. Naturally, I "did the research," moving just a bit after the first series, and they had to start all over. My non-mass enhancement turned out be ALH, ADH, papilloma (2), adenosing sclerosis, and a couple of other things I forget, all totally benign, and I hope your sister has a similar outcome. Oh, and don't worry about the overlooked mammogram--the procedure involves mammos before and after, gentle ones with minimum squeeze, just to document location, not diagnostic.
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Brookside, And Janis thanks for the support.
I plan on having a better day on Friday.My manager will be gone and hopefully my office manager will take the day off. Too.
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Brookside, thank you so much for the detailed info about how an MRI biopsy works. I've heard vacuum biopsies are never fun. I am not going to tell her this. In Susan Love's book, it says MRI-guided biopsies are not an option for people with severe anxiety, and this sister has that. She told me she will take Valium and also Vicodin if they let her (after she signs the consent forms), so maybe that will be enough. Thanks to all for your positive thoughts about what they will find. I hold out more hope than my sister does that it will all turn out to be benign. I wish she (and we) didn't have to wait until late next week to do the biopsy.
I am feeling a little better today overall, and thanks as ever to you lovely people for your support. My husband picked up my hydroxyzine today so I am ready to meet the lowered Bactrim dose head on.0 -
Runfree, I asorry about your sister's possible diagnosis. I will pray it turns out to be nothing except a scar
Josie I am sorry you had another bad day at work0 -
Geez so many typos. Runfree it was supposed to read I am sorry abour sister's possible diagnosis. I will pray it turns out to be nothing except a scare0 -
That's actually funny Kate, because I was thinking, good point, she will have a scar, but maybe nothing more! But yes, I also hope it will be nothing more than a scare.0 -
hi everybody
itchy bumpy rash going strong here- I can't STAND it at night- wakes me right up. I see my MO tomorrow first time since right after surgery so I am sure she will provide insight.
Ant update- thought the little @#$%$^% were all gone but then saw about 20 more today- its cold here for california so maybe they will freeze lol.
runfree- this development with your sister is unfortunate but everything for a reason and you might need this to get you out of your "fall funk". Focusing on her and supporting her gives you a different focus and it sounds like she needs someone strong to be there for her right now.
I had a vacuum-assisted breast bx in 2009 and actually found it much easier than the core one I just had- it took longer but much less discomfort during and no bruising after. I did not have it MRI-guided so can't speak to that.
btw- I went to a mtg today with an awesome speaker- she is a nurse who has traveled the globe with amazing wisdom. she talked about fall/thanksgiving, gratitude and end-of the year reflection. I thought you guys might find it interesting.
she said ask yourself 4 things- I really had to think about this
what have been my 2 greatest blessings
what have been my 2 greatest learnings (I was stretched and challenged outside of my comfort zone)
what 2 acts of mercy have I performed (kindness/forgiveness)
what 2 opportunities for protection have I had
She emphasized we are all so good at knowing what is going wrong and need to take stock of what is right. She spoke about how all humans are in some type of transition related to
work
relationships
health
finances
role identity
she then said illness results in multiple transitions in several of these areas and to understand patients are managing these transitions during their illness- really grounded me today.0 -
Hi yall
RunFree - read your post and wanted to curl up with the covers over my head ugh
this thing called c. Yes, please skip our sisters, daughters, nieces...praying that the MRI is a big fake positive glitch...a crazy stupid mistake, wrong bump...fingers&toes crossed.
Josie - here's to a good day on Friday! My next bone scan is scheduled for June...wish I was under your care
Kate - kuddos warrior...my iPad always self corrects...wrong word spelled right ugh! Have a warm cakeball keep the leg up!
Brookside - Iots of coal...you r the naughty or nice warrior!...go get those nasty post snatchers...:(
Janis - MRIs have their place...had my 6 mo mammo and in June will have MRI to assure that the pre surgery spot at 3oclock got the hell radiated...my lx focused on 2 spots at 11oclock and post op MRI radiologist did not flag or request a biopsy of 3 so on to rads...major discussion. Will be glad to have Jube come and all this garbage gone...
Joan - my play date with toddler wore this gma out! We have another date next wk than an overnighter...building up to it! Wish I had a whole herd gobble them up! Enjoy your GKs:) schools almost out!
Dads pacemaker success heart beat now 70 v 35...ds reminded floor it was his gd ha! Guess I better up my tennis game my dad will have more oxygen...gonna get creamed.
It's cold...fireplace with Christmas light time!
(((Hugs)))
Cindy0 -
Oh a silly white coat anxiety thought...
My dad asked how my MO appt went yesterday...
I said remember how our Irish setter would get all excited grab his leash and run to jump into the car for a ride...only to jump out tail wagging to realize that he did not want to go into that building...legs shaking dragged in...foaming at the mouth...well my lo BP 106/60 was normal 120/78 but I was panicked when they took it in the area where they do IV to draw blood and do infusions...heart racing...I could hardly wait to get out...hubby looked peaked...about to toss his cookies walking out...he said he needed to vomit...for the1st time I could smell death in the rooms ugh...scared me so...just kept thinking of our dog...funny how that image just stuck in my mind.
Ok goodnight0 -
Cindy- big hug!!! it was me your warrior nurse riding in your pocket dragging you by your "leash" into that appointment. You don't always have to be brave- you just have to show up and you did. You can do this-
I had that moment of truth myself twice first at the MO clinic then at the RO office- sitting in the waiting room everyone looked so sick and old and I thought you are not the nurse here to take care of them kiddo you are one of them. I was really scared.
Nothing like convincing yourself everything is going well and then feeling like maybe its not. We are here for you Cindy as you have been for us-0 -
Brookside, like you said, I have written long posts and whoosh they disappear berfore "send".
I just read back...been faling asleep nightly.
Run, I am so darned happy that you are feeling no effects from the rash right now. You are armed and ready to test the bactrim withdrawal. Here's hoping you are rash-free.
(wyo, sorry you are so miserable....hope that you can find a treatment that works soon.)
Cindy, so glad you had your toddler play date! Yes, it is tiring....and the overnights sometimes do me in....I force myself to stay up a short time after kiddy bed time just so I can regroup and feel like an adult again. I also like my alone time. Last time I went to MA to stay with Caroline (2) she decided she no longer goes to sleep in a crib. That meant I had to keep her downstairs with me and I felt like I never got a minute. Where you you visit? at your house or are you traveling? Maybe you mentioned it...
And so happy about your "uneventful" MO appointment. I have low Vit. D and twice took the 50K units once weekly for 8 weeks.Then switch to OTC low dose. I am due for 2nd bone density
Kate, I hope you are hanging in there...is there any massage you can do to get relief? You have been so active through all this...can you still get out? Is there a chance that any of your family may visit you in CA? I think it is great that you are thinking about travel to Chicago.
Gigi, thinking of you and the bitter cold that has moved into the central US. When was/is the Florida trip?0 -
Joan - drove 90 minutes to visit in Temecula...played 5 hours...dad was at VA there for his pacemaker so saw him...then 90 minutes back to Rancho Mirage. Overnighter will be at our home in Rancho Mirage with the parents at a condo minutes away...we keep an extra place for holiday overflow and they need some R&R without the babe)) hubby is concern about toddler sleeping with us...squirm kick wiggle! Will be interesting.
Thanks for info on CA and Vit D!
(((Hugs)))
Cindy0 -
Runfree, Cindy, I relate to the change in my thinking about what is important and what I want to do....My hours are long; 5 days and 2 evenings...some days I never get outside except to drive. There are two or three things happening ...first, the drug effects....I have much less tolerance or patience for other people..and I have cognitive impairment. I used to be the ultimate multi-tasker. Now, if there are many items to look at, or multiple tasks, I just tune out - and I catch myself saying 'I can't do this".... There is the issue, as i get older, about what do I really want to be doing (especially when I have no loyal or caring colleagues)...I just want to be doing other things...work in a garden, visit my kids more...
The dilemma is I like my job and I don't want to be alone all day. But I sure would like to sleep in...
Then there is just plain "getting older" and realizing that I want to pace myself and listen to my body....but I am always pushing myself. And when I do push, I am ever grateful for being healthy enough to do it. Does that make sense???
Today we had a financial appointment at DH's job. We realized that we could retire with a greatly reduced income but we could make it (somewhere) If I could have travel $$ and afford my living expenses, I would not mind retiring.
Run, so sorry you and your sister have to go through this time of waiting for results...I hope you will know soon. I cannot imagine an MRi and a biopsy....I had the US guided with vacuum biopsy. It wasn't bad. But being enclosed in a tube....is not for me.0 -
Cindy, sorry -- just saw your post with the details of your trip. I hope Dad is doing better. You rip up the roads like I do...so many places to go!
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Joan - the decision to retire is difficult.
Hubby retired yrs before me. We set a window...when I felt my goals were achieved considered early retirement...consulted the first 4 months then reminded them my plan was to leave CA and travel...would I telecommute lol! Seriously, I wrote my own job recruitment brochure and signed papers to terminate myself...crazy... No...I want to play...admit that the first 6 months I did work 18 hours a week as I was going crazy...staff laughed that I was working for such a wage...then got my retirement routine in place and am very happy...busy bee...just this hic up this past year. Rental income helps...and hubby is a designer...so he can work or play...best wishes on decision.
Dad is great:)0 -
Wyo, the itchy rash sure is going around! I am so sorry you've been suffering. I found a fascinating thing in a translated Swiss medical book from 1766 that I've been reading (as a historian, studying the history of medicine among other things, I get to read some weird stuff). It's from a chapter called "Of the Itch." "If [the itch] becomes very inveterate and tedious, it exhausts the patient, in consequence of its not allowing him to sleep at nights, as well as by his restless irritation.... This malady is often very obstinate." And how! Have you tried prednisone yet, or OTC things like Zyrtec or Benadryl? I have done well with oral Bactrim and Triamcinolone steroid cream, but I've tried a bunch of things; next up, hydroxyzine, low-dose tranq often used for medication-induced itching. I hope they get to the bottom of your problem ASAP! I also loved the story of the speaker you heard. Those are wonderful questions. About what my sister needs from me, great point--though it makes me think a bit about our relationship and our history. She's seven years younger, the youngest of four, and she's quick to feel as though I'm being overbearing. She was incredibly supportive to me, but it could rub her the wrong way if I do too much to help her. I will have to be careful about that. One would think all this old junk would go away when the chips are down....maybe it will. Meanwhile I certainly hope this is all a big false alarm.
Joan, I feel so badly for your situation, not feeling like yourself cognitively, and doing this very hard job for so little recognition and support. I have such a supportive workplace now and I'm grateful for it every single day. Teaching is so exhausting, so full of hassles and challenges, that it seems hardly worth it if people aren't nice to you. Could you scale back maybe, go to a 2 or 3 day schedule, or try to get classes later in the day? I know adjuncts don't have much choice in the matter, but if you don't need the money to live on, maybe it's time to look into going halvsies? But maybe being able to travel is more important than trying to improve your teaching schedule. I don't know the details, of course.
Cindy, your story of your sort of panic attack at the MO's office is very interesting. As with your Irish setter, it sounds like just a primal response. I'm sorry you had such a hard time. I think we all just have to expect this to reach out and grab us by the throat every so often. Great news about your dad. You must be glad you're not in Texas right now! I just saw that the Dallas Marathon has been cancelled due to the ice. What a mess.
Thanks, Wyo, for the reassuring info about the vacuum biopsy. I just talked to a college friend today who was diagnosed with DCIS last month, and this week her new MRI found something on the other side that she'll have to have biopsied this week in the same procedure as my sister will have. On and on it goes. It's good to know a vacuum biopsy can be less uncomfortable and leave less tenderness than a core kind. I will tell both my sister and my friend what you said. My core biopsy left me sore and bruised for quite a few days, I must say. Joan, a breast MRI isn't inside a tube in the same way as a regular MRI. At least, mine wasn't. You're face down and your head is out of the tube, and it's not dark. I didn't find it claustrophobic at all, just hard to lie still and noisy. My sister is relieved to have learned today that she can have both Valium and Vicodin and play her choice of music during the procedure.0 -
New here.... I have been hanging with the Lumpies and the October chemo thread -- recognize a few names (Hi Cindy) But my last chemo is coming up on 12/18 (anticipating a very HAPPY dance) and I thought I should get on to a rads thread as I will be starting in January. Is this where I should be, or should I start a Spring 2014 rads thread?
Also, since this is a a recovery rads thread, I have a question. I had a severe allergic reaction to Taxatere after my 3rd tx -- hives over about 40% of my body. I see several of you mentioning rashes as a SE from rads. Does rads bring back any chemo SEs? I know the reverse can be true, which is why chemo comes before rads.... But wondering if I have not seen the last of this allergic reaction, even though I won't be getting Taxatere in my last tx (MO feels it would be too dangerous).0 -
Welcome Kim, Happy Dance shoes are ready to celebrate:)
Skim through this thread and then consider starting a Winter 2013-2014 Rad Thread! Gather the soon to be laser tag warriors as you prepare to start rads...and go through the daily grind of rads. You will rock it.
Hydrate, emu oil, hydrocortisone, extra protein, and free boobing! My skin did very well...small out break of rad rash around tx14, but really had an easy go. It was more mental the daily grind of showing up and jumping on the table...check out Spring Rads 2013...or Summer or Fall...but Dec21 is first day of winter. Sending calm confident thoughts and prayers as you move forward in battle! We will be in your pocket...this is the wild noisy fun pocket party crowd!
(((Hugs)))
Cindy0 -
Hi Kim! You are going to be SOOO happy soon!
I'm one of the hard-core rashies on this thread. My rash started on my radiated skin, and my dermatologist says it's probably radiation recall dermatitis, but in my case induced by Tamoxifen--a very rare response, but known to science. My rash then spread elsewhere, probably also triggered by Tamoxifen. So I don't blame the rads directly. I think you will find rads much easier than chemo.
Do you mind if I ask why you needed chemo? Was it your grade 3 or an Oncotype score? Your diagnosis looks a bit like mine overall, so I'm just curious.0 -
Joan I am doing lymph massages with a YOU Tube Video.It is too difficult for my kids to come here, but It looks like I can go there in February.
I talked to my surgeon's scheduler today, and my surgery definitely will be in January. She has to speak to the surgeon who is going to assist my robotic surgeon to check his schedule. The surgery will be sometime between January 13 and January 31. I might find out Monday.
I saw my MO today, and he said my thigh definitely looks bad, but it doesn't look irreversible-Thank God. I was due for a CT scan the last week in December, but he said now I will get it after the surgery. I am glad, because waiting for CT scan results makes me nervous. He said it it not dangerous for me to wait to do chemo. He said I will probably have to do it 4 weeks after my surgery. I will make it 5 weeks, because I need to recuperate 4 weeks after the surgery, and then I want to go to Chicago to see my family. I have a choice of doing the same kind of chemo I did last time, or doing chemo that is easier on me and less aggressive. I want to do the same as I had before. It is more difficult, but I would rather go for the one that is more aggressive, even though it will make me feel sicker. I asked him how long I have to do it, and he said 3-6 months. I told him I draw the line at 4 months, and he said ok. On the fifth month I had a lot of hair shedding, and I felt much sicker.0 -
Kate, thank you so much for the report. It seems as though things are moving forward. Bravo to you for choosing the harder chemo, wow! I love how you are so clear and thoughtful about your choices. Did he think your thigh would get any better even before the chemo, or are you pretty much stuck with it as is until you can do chemo again?
Also, I hope you have something fun planned this weekend!0 -
Thanks Cindy! I will start a winter rads thread, but will do some reading and research first.
RunFree, I had chemo because Mammaprint came back high risk. The grade 3 and the "wonkiness" of my cancer cells probably played a part in my MO's recommendation too. He also ordered the BCI test, which showed that the chemo would be more effective than the hormone therapy, though this test is still building data sample size, so my MO doesn't quite trust it yet. So the standard 5 years Tamoxifen is in store for me starting around the same time as rads. According to all these tests, MO says it takes my chance of recurrence down from 30% with just surgery to about 4.5% with treatments. Seemed worth it.0 -
Teamkim- by all means start your winter rads page but please feel free to be here with people who are in process, finished or just finishing as well.
Runfree I am starting my tamoxifen tonight- and I hope I am not one who has rash issues exascerbated by the new medication. My doc gave me prescription strength hydrocortisone cream today when I visited her and its already making quite a bit of difference in the constant urge to itch! She says its in the field of radiation but does not look like a burn- she is going more with dermatitis which it does look like but with more raised bumps and redness then I typically see- I loved that book you were reading on rashes- I think things are pretty much the same as they were 400-ish years ago LOL
Kate- glad you are communicating with those schedulers and making your own decisions about treatment type ,dates etc. Take care of that thigh.0 -
Lost my post....bed time....was thinking of you all...will catch up tomorrow. Sleep!!!0
