Winter 2013-2014 Rads

Cari3047

Thanks TeamKim for the link on taste.  I have been so frustrated, as nurse and rad techs are telling me that radiation is "targeted" and none of the things I've been experiencing since starting treatment are SE's of radiation.  In addition to losing my sense of taste, I also have tingling and a flushed feeling in my face and headaches that started after my 2nd radiation treatment.  I am being told that it has nothing to so with radiation and must be either anxiety or something else going on.  I don't believe radiation therapy is actually so targeted that no radiation goes anywhere else... if so why aren't other people in the room during treatment?

Thanks for letting me vent.  I am frustrated and angry about the entire thing!

smrlvr

I am so grateful for this thread.  I do not start rads until March, but I want to know what to expect, so you ladies are helpful.

Cruiser, did your MO give a reason for waiting 3 to 6 months for port removal.  I want mine out ASAP.  Just knowing it's there is driving me crazy, and I can't sleep on my stomach.

Beth, I am starting taxol next month.  What are the side effects you are having?  

Have a great weekend ladies! And thank you.

CruiserMay

TeamKim, ultra does sell nioxin products, but when I priced them amazon was cheaper to buy the set of 3 products (w/amazon prime anyway). From what I was told, system 1 was early stages of thinning whereas system 2 was noticeably thinning, which seems to be my obvious situation that I'm trying to reverse. It does seem to be working ...just not at my desired pace (along with the biotin...I take 5000mg/day as my MO said it was ok since she felt I should have had more hair growth once taxol was underway).

Smrlvr, I think my MO waits 3-6 mos. before removing the port, just to be safe. I have to say tho...I am rather ticked off because she told me that since I am "only" stage 1 I cannot get any scans. From what I understand, since I did not experience any "issues" to warrant the need for any scans, none can be approved. Guess it comes down to what the fed. Gov. Deems is a worthy expense now. Anybody in a similar situation? After all of this, you would think that scans would be covered, so you would know that the chemo and rads worked instead of a wait and see attitude. Sure, now let's be reactive instead of proactive. Aaargh.  If anybody else is stage 1 and will be getting any scans after your treatment is done, please advise so I can research further. I was told by staff in my dr's office that things will only be getting worse with obamacare.

Holeinone

Cruiser May, I am stage 3, I was told there would be no follow up scans...I asked for a MRI, when my mammo time comes up. My MO said no, I want one on both breast as mammos do not pick up lobular cancer easily, like in my situation it had to be missed for 3-5 years....

I think if a MRI was ordered my insurance would pay, she is new to our area, not sure if she really is aggressive when it comes to ordering tests..I have an appt. in Jan. with a geneticist, she said he can decide if it is warranted. So, I will let you know what he says...I have read on different threads that they do not want to look for mets, as it will not change your prognosis...

Cari3047

Cruisermay, I am stage one and finish rads on Jan 14.  I am scheduled for a full body CAT scan following that.  I go to Moffitt Cancer Center in Tampa. The only thing I see really different in our diagnosis is that I was 1/2 nodes.  I would fight for it if I were you!

TeamKim

I have the CT scan (first one I have ever had) scheduled for Jan 10 pre-rads.  

Before my surgery, I had mammo, then biopsy guided by mammo, then MRI (both breasts) which found a another area of cancer), then US, then MRI-guided biopsy, then wire placement guided by US before surgery -- so tons of imaging before surgery.  

My BS says that I will probably have alternating mammos and MRIs going forward (not sure how often, but I am due for annual mammo in June) because my dense breast tissue hides cancer that is not visible on mammo or US.  She seems to think my insurance will cover this.  Previously I was referred for annual mammos by my GYN, but BS says she will follow me from now on, so referrals will come from her.

LanaM

My MO said I won't be having any scans or anything when I'm done. I also find that odd. Just mammogram annually on remaining breast,and periodic blood work if I recall. I meet with MO on Jan. 15th and I plan to ask again. It's scary since I didn't find my cancer myself when I really should have - my tumor was 5.6 cm and after diagnosis I could feel it clear as day. I was never one to do self exams - guess I'll need to change that! I've been on vacation since starting rads & I go back to work Monday - it will be interesting to see how it goes having treatment at 8:15 and then working all day! I've been having rads at all different times of day the last 2 weeks. Last thurs my apptmt got time changed twice due to problems with rad machine. 

lovewins

I hear you Lana...I have not started rad yet but I will have to do about two weeks along with working an 8 hour day.  I pray it is doable and I am strong enough by then.  It will be a week Monday that I had my last chemo.  Plus we have the weather to contend with.  Wishing you the best.

joannaraku

hi I am due to start radiation the end of January. Don't know what to expect. Any information would be helpful. I had a lump and a lymph node taken out in dec 5. Still have pain and still swollen around stiches. Is this normal?

MinusTwo

Joan - go back to page one of this thread and read forward.  You'll see lots of descriptions & hints about radiation, as well as recommendations for a couple of other informative threads from the Mods.  

I can't answer about the lump & node but I'm sure someone else will jump in.  Sorry you're in pain.

TeamKim

joannaraku -- welcome to the winter radiant group!  Sorry that any of us have to be here, but we are great support for one another.  As MinusTwo advised, read from the start and also check out the fall 2013 rads group for info.

As far as healing from surgery, you might want to also join Lumpectomy Lounge where the "Lumpies" can chime in for advice on healing.  My surgery was lumpectomy with "rearrangement" -- they took a wedge of tissue from the BC breast and did some reconstruction at the same time, so it was a bit more extensive.  It took three weeks before I could sleep in a bed rather than recliner.  Swelling was down after about a month and "zingers" (pains from the nerves healing) took a couple months to go away.  One spot in my incision was especially slow to heal, and I was still messing around with that spot for about 10 weeks. Everyone is different, as you will learn -- different cancers, different surgeries, different doctors, different bodies -- but we do have in common that we are fighting the common enemy: BC.  I hope you find it helpful to join with other warrior sisters!

Oncearunneralwaysarunner

Good morning everyone, hope you are all doing well and surviving the holidays!

I've been reading all of your posts, just have not had time to post back then needed to cool off after my CT simulation was postponed on Friday. Sorry if this is a bit of a rant. I was all ready and set to get moving forward and it has been rescheduled. I got all the way to being placed on the table and into position only for the tech to notice the nice huge seroma I have in my armpit where the lymph nodes were taken out. After discussions with another tech and the RO on call that day, it was decided that it would best to do the scan after I have the seroma drained. Any changes in the contour of your body affect the way you receive the actual radiation and impacts the plans they develop. I'm rescheduled for my simulation for the 6th of January but I somehow have to manage to reach my surgeon's office to have this thing drained before the 6th which I expect to be a challenge due to the holidays. As of right now my treatment is not being delayed but it might if the scan has to be pushed back. 

I noticed some of you mentioned wanting to lose the extra chemo weight, I do too but I've been advised to wait until radiation is finished to drop it. It's for the same reasons as why they are not doing my simulation yet, any changes in your body contour affects treatment. I have about 25lbs to lose and was hoping to get going on that so that I could avoid having to buy new clothes in a bigger size to go back to work. I can work out but I've been advised against actively losing weight. Good thing I can live in yoga pants and running gear, most of that still fits me due to the stretch in it!

As for vitamins, I've been advised to stay away from vitamin A, C and E and any supplements containing anti-oxidants as that works against what radiation is doing. I haven't been told to stay away from much else. 

On a positive note, my hair is growing back but really slowly. I had my last chemo treatment two months ago and you can still see scalp but it seems that there is a bit of hair all over my head right now. It's about half white and half brown but I'm normally a natural red head and way too young (31) to be having that much white hair! I'll be glad to have insulation on my head again, hats are great but I would like to sleep without a tuque

Cari3047

HI, Joannaraku.  I had two lymph nodes removed mid November and still have some pain from it deep under the skin when I move my arm certain ways.  If your pain and swelling is from a breast incision for a lumpectomy this long after, I would be more concerned.  I ended up with am infection from my initial surgery that turned out to be MRSA and was on IV antibiotics for 6 weeks.  You can't be too careful in having it looked at.  I had pain and slight swelling from my infection, but no fever or discoloration.

As far as my rads are going, I finished number 7 on Friday.  The skin is starting to change now with some dark patches and I woke up yesterday with a rash of tiny bumps that cover from under my arm across and on my chest up to my neck and even a few on my untreated breast.  I have been using Aquaphor 2 or 3 times daily and organic aloe  liquid, not gel when I feel the burn.  It gives me immediate relief and I like the liquid because it absorbs completely into the skin and I can put the Aquaphor on after.  I'm not crazy about the vaseline like consistency of the Aquaphor and looking to try something else.

joannaraku

thanks everyone for all the info, it really helped. I live alone and all my family lives away so its hard to find someone to talk to about cancer.

Pokemom1959

Hi Kim - Thanks for starting this thread!  I'm having a lumpectomy in January (1/23/14), and will be having rads, but have elected to have IORT.  Fortunately, my breast surgeon is involved in a clinical trial and she got me into it (at my request).  The RO says that with the IORT, I won't have any of the normal side effects of rads - no "sunburned" skin, no fatigue, etc.  I'm really ready to get this done and over.  Where are you located in OC?  I'm in south OC, but will be having my surgery and IORT at St. Joe's in Orange. 

Debbie

TeamKim

Welcome Pokemom!  IORT is a great option if you qualify -- I am all for the no SEs, and it helps you not to drag out the treatments over months.  I live in Northern OC.  Had my surgery at Long Beach Memorial, and my MO and RO are in Los Alamitos.  St. Joe's is a great hospital.  I work in Orange, and have some colleagues who have been treated or had surgeries there.  Good luck with the Lumpie -- check out the Lumpectomy Lounge thread on these boards for sister warriors who will be healing along with you.

gilbert

To rosecal|954  I just read your post today, I have'nt had time on the computor because of Christmas.  I'm on my 22nd treatment , also no chemo, just 6 more and then 5 boost and maybe life will somewhat get back to normal can't wait.   I'm really tired of the 1hour back and forth to the hospital every day , thats including treatment time, so I guess thats not so bad.  I started feeling fatigue about 15th treatment, never felt anything like it before, totaly differant from being just tired. Felt like I weighed about 400 lbs. and couldn't wait to sit down and that didn't help. I drive a school bus so am able to go for treatment in between runs, also i'm  sitting on the job, I don't think I could have made it 8 hours on my feet. Hats off to any of the ladies that do it.  I wanted to pass along a tip of something that has really help with the fatigue problem.  I went to my primary doctor and got a B12 shot,  I can have 1 a week, now Ive had 2 and going to get one more before end of the year.  I'm a new person. It really did help. No more fatigue. As far asthe Tamoxifen look for natural alturnitives, the side effects to me weren't worth it. God Bless

Gubbyann

Hi Teamkim, I would love to join with all of you...I start radiation on Jan. 2nd,2014. Finished chemo Nov. 27th and I am now all marked and ready to go...Guess I sound anxious, and I am...Anxious and ready to get this over with, as all of you probably are...I really don't know what to expect but I am sure I will find out soon enough..So good luck to all you brave souls out there...Will be back to start sharing my experience, and hope to read about all of yours...God Bless you all...

Gubbyann

Hi TeamKim, just read your post of Dec.28th...Thanks for the Biotin tip, will add that to my others...May I also suggest a multi-vitamin, and protien drinks...Especially to those who don't or can't eat right..During my chemo( I am 5 weeks post chemo now ), I lost my taste, and still have trouble tasting, so everything I put into my mouth tastes so bad that I don't eat much...Since I been taking the multi-vit and protien drinks, I am feeling stronger...And my blood work is nearly normal again...As far as the Biotin, I figure what can it hurt...I am loosing some nails, so maybe this will help....Wish I have known about it a lot sooner...Take care and God Bless

TeamKim

Welcome Gubbyann & thanks for the vitamin tips.  I also read on another thread that someone recommended a shot of B12 during rads if fatigue becomes extreme -- Gilbert said she got it from her PCP, so I might try there if that becomes an issue for me.  The taste buds taking a vacation during chemo is a bummer -- I had about 14 days of no taste at all during each 3 weeks following infusions.  I lost the taste for sweet first each time and it was last to come back -- really made the baking to Christmas difficult.  On the first day that I could taste. Christmas cookie, I almost cried -- finally something tasted the way it was supposed to!!  I hope your tasters come back soon!

I bought Nioxin and started using it on my fuzzy head.  Don't know if it will help, but at least I feel like I am doing something to help it grow.  We'll see.  

For all of you in So Cal, there are two nasty stomach viruses going around -- DS was sick for about 8 hours with big D and vomiting.  If anyone around you gets it, stay clear as you can and disinfect everything.  It is highly contagious (like the disease that goes around on cruise ships).  Now I wait to see if DH or I caught it from DS.... Fingers crossed!

Cari3047

Hello

I'm not sure if anyone is reading my posts or not, but I'm finding it very therapeutic to post on here, so thank you Kim for starting this up!

Today I had my 8th of 18 rad treatment and met with my RO.  She said the rash covering my chest is just inflammation of the hair follicles (there is a name she called it, but I can't remember), and not blistering or burning, so I'm thankful for that. After tomorrows treatment I will be halfway finished!!!

I am reading a book called "After Breast Cancer - A Common Sense Guide to Life after Breast Cancer" by Schnipper.  I highly recommend it.  My emotions are all over the place and it's really helping me to get them in check!

Cari3047

Oh, and I also found out today that my tumors are grade 2, not grade 1.  There were conflicting reports, but got it sorted out today.  Not sure that it really matters.  I am curious how long it takes a grade 2 tumor to grow to 6 mm (the size my first one found was).  Going to be doing some Googling on it!

Holeinone

Cari3047, yes, I am reading your posts, and I am sure others are also...you are almost 1/2 way  through, is that correct? I will see if my public library has that book. I have only had 5 zaps out of 28, or 33. I am not even sure...put my head in the sand on the whole rad thing, chemo was so tramatic that I am out of energy to get excited about this...My skin is getting weird though, bumps.....let us know what you find out about the speed of growth...

SallyS70

I'm here too soaking up info.  My rads start January 6.  Thanks to everyone for posting.  I must have my head in the sand because I haven't gotten a recommended soap or lotion yet.  I keep thinking that the 6th is a long way off, but it isn't.  My simulation went very well, so I don't know why I'm nervous about the 6th.

Holeinone

Sally, another issue I did not ask about, waited until the first zap...My place gave me this large bottle of lotion, it's a burn ointment..so wait until you go and if they do not give you something, they will tell you what to buy, or better yet, call so you will know ahead of time..the 6 th will be here soon. The rad techs are really friendly and make you feel at ease, at least at my center...

Cari3047

SallyS70, I was a nervous wreck before my first treatment.  Just having no idea what to expect alone is nerve wracking! My simulation was done in a completely different type of room than my treatment.  The machine and table were totally different too.  I think today was the first day I was really comfortable with going in there and getting it done.  It's a process!

DawnCT

Hi Again everyone!

I read this board everyday and really appreciate everyone's posts and input.

I had rad #10/25 today.  I am getting red and am not sure whether my tiredness is due to the holidays or the rads!  I  have been faithfully using the Calendula ointment and aloe as well.I am wondering how bad my skin is going to get.    I really don't like getting the rads -  the long term effects still worry me but I keep reminding myself that if I wasn't doing rads I would have had to have a mastectomy.  I only have a 10 minute commute to the hospital so I don't mind that part.  

Cari - Yes!  I am reading your posts and I am glad you are here! That's a good tip about the liquid aloe - I will keep it in mind.  My skin is starting to feel irritated so I may need the relief! Also, I have seen that book suggested on another post and forgot about it.  I think I will order it from Amazon.  Please keep posting!

Gilbert - Thank you for your input too.  I liked your description of feeling like you weigh 400 lbs and have to sit down.  I guess that's what fatigue feels like?  I hope it doesn't last.  I'm glad you are getting close to the end.  I agree with you - I just want to get this done, heal, and move on. I am planning on Tamoxifen afterward but haven't decided for sure.

Keep plugging away everyone!  Before you know it , we will be rads grads!

Dawn

lindacam

Hi everyone.  Just finished my last rad today!!!! Have a nasty burn to neck area and the restvis quite red but not painful.

I had to drive 4 hours round trip each day.  So glad its over.

Holeinone

lindacam, YEEHA ! ! !   You are the first rad grad ! I am pretty sure, unless I missed something.. 

Congratulations...the drive would of been a bitch, & I am a weirdo that loves to drive..it must be a fantastic feeling. I don't remember if you posted whether or not you were  going to take hormonals.  Good Luck with the healing process...let us know about your progress...

TeamKim

Lindacam -- WhooooHooooo!!!  Congrats on being D-O-N-E with the grind of rads!!  I can't imagine the hassle of that long commute each day -- your dedication and perseverance are amazing!  Pocket party for Lindacam!!!!  Doing the happy dance!  Here's hoping the SEs fade quickly and you can put it all in the rear view mirror and get on with life!