May 2012 radiation

nancyjac

schatzi,

Have you ever seen an orthopedist about the hip pain?  I have a knee that has given me some problems off and on for years, but since chemo it has beeen pretty much constantly painful after very little time walking or standing on it.  My oncologist was concerned that it would keep me from being able to do the excercising I need to do to combat fatigue, maintain bone density, and fend off joint stiffness from continued treatment, so she referred me to an orthopedist.  Turns out I have osteoarthritis in that knee, not as a result of cancer or cancer treatment, but possibly exacerbated by it.  He gave me a cotizone shot and it has made a world of difference.  I'm not saying that you necessily have the same situation with your hips, but that it would be worth finding out.   Would be a shame to go through changing AI meds only to find out that the hip problem isn't resolved by doing that.  As you said, you have always had the sore hip occasionally, so it seems probably to me that having it treated for its own issues by an orthopedist might be more helpful to you than assuming it is do to an AI and changing those meds.

schatzi14

Hi Nancy...yeah I have often thot of going to see a specialist, but then I would be OK for months and I would put it off, kinda feeling like an idiot to complain when so many others are in real agony. I am thinking perhaps it (I hope) is due to lack of exercise. I admit this last year was spent mostly sitting in my recliner! I did myself no favours. Just had no energy. I should add I am 68 so could also be old age catching up with me! We will see how it goes by October. Today is a good day, been hanging out laundry and weeding...so far, so good!

mckenna

it is amazing what some of you have been through.  more in awe of your sense of humor and grace.

had my first period on taxoxifen and i can't do this every month if it continues this way.  i have always have bad cramps but 4 ibuprfen every 4-6 hours kept me comfortable but on saturday i was taking 4 every 3-4 hours and that was not even touching the pain.  i posted a thread here about it and a few people said the same happened to them but only for the firs couple of months.  if it happens again next month, i am going to talk to MO about it at my sept. appt.  the hair shedding, extra warm temperature and mild muscle aches i can deal with but i can't have that once a month for the next 5 years.  luckily it was  saturday/sunday that was the worst of it or i would have had to call in sick at least the first day. 

was introduced to a newly diagnosed bc patient through a friend this weekend.  and she was so scared (starts chemo this week).  she just looked so scared.  i don't remember looking like that but i guess i did.  i could only share my rads experience because she is having 6 rounds of some chemo i have never heard of (she said only 10% of patients loose thier hair on it???) and they will start rads after her 2nd round of chemo so she will be doig both at the same time.  i told her it won't seem like it at the time but when you look back it will seem like it went quick (at least that is what it was like for me).

i think there are 2 people posting her now that i need to add to our list but i can't find them, can you tell me who i am missing?  thanks

have a nice day

SusannahW

McKenna, I will be finishing my rads on 7/23. The machine was down for a week, but is finally up and running, I can't wait to be done.



Susanah

mckenna

TODAY IS 7/23? is this your last day?

SusannahW

Sorry, 7/28 is my last day. My IQ is dropping daily.

Neeners815

Poor Susannah - I know what you mean.  I call it cancer brain (because I can't call it chemo brain since I dind't have that!).  LOL.  Anyway, woo hoo you're almost there!  I can't believe you had to wait a week.  What a bummer, BUT it will be done before you know it!

McKenna - that period story is freaking me out.  I'm having a pep talk with my uterus now (it worked for the most part with my boob!).  Big hugs to you and I hope it eases up stat!  Edited to add that a couple of women in the chat actually said their periods STOPPED when they took tamoxifen.  Go figure!

BLinthedesert

ha ha neeners ... no righty or lefty when talking to your uterus, neither side will get jealous now ;-)

Neeners815

Hee hee BL!

mckenna

neeners, the second day was much better and the past two days have been fine.  i know some people stop thier periods all together but of course that would not be me i am going to wait it out to see what happens next month.  don't get freaked out yet.  i have had every strange side effect from surgery, rads and now tam, so don't go by my experience

sbelizabeth

Susannah, you're almost finished!  The light at the end of the tunnel is growing very bright!

Mimi1, this must be your last day, right?

Mckenna, sorry about the misery with Aunt Flo.  I left periods behind about four years ago and never looked back.  The cramps I could successfully treat with Motrin, but the leaking/spotting/staining/changing was annoying.  Don't you love being a woman?!

The radiation wounds are healing, but sloooowly.  I thought they'd be like road rash from a bike crash, but nope.  My medical oncologist provided me plenty of "poor baby's" which was immensely gratifying. 

Happy Tuesday, everyone!

mckenna

sb, it took a good 3 weeks post rads to heal for me.  so sorry you are still havning pain.  even now i still have to wear a sports bra i guess because it is all new skin and new skin doesn't like bras

forgot to tell you i went to a bc support group on reconstruction last night.  it was more for people who had had mastectomies but it was very informative.  it also finally helped me come to terms with the fact that at this point lumectomy and rads was right for me.  i had been really mad at my first surgeon for basically taking that option away from me, but last night made me realize, that it was the best for me.  still going to have the good boob made smaller and lifted, though

and, my 7y/o told me (unpromted) that she can tell i have lost weight.  made me feel so good.  i didn't think the kids had much noticed yet

nancyjac

It's been 2 weeks since my last rad and I am pretty much healed.  Still a tad pink under the armpit area, but other than that, no more burning, itching, pealing, or redness.  I see the RO for a follow up tomorrow, but I think this is just more of a last visit to make sure no problems and have a nice life kinda thing. 

BLinthedesert

I am not even pink anymore -- barely a tan!  I can't believe how quickly I healed up, so grateful.  And, mckenna, I too am grateful that I was able to keep my breast.  It is a little lopsided, but I needed padding anyway (since I am pretty small) so no one can even tell but me! 

I hope you all continue to heal and enjoy the rest of the summer!! 

Neeners815

Girls I may be having a reaction to the tamoxifen.  My heart keeps skipping beats.  I'm going to my doctor now for an EKG to see if it's an allergic reaction, or anxiety.

sbelizabeth

Well, here's the deal.  A few months ago, I looked into the latest research in breast cancer and discovered a clinical trial from Germany--the GeparTrio Study--that was presented in Texas late last year.  It described an arm of the study that included additional chemotherapy, beyond the original 6 rounds, and recorded an impressive decrease in recurrence and increase in survival.  I brought the documentation to my oncologists, who agreed it sounded like a good idea for me, and thus...for the last two weeks of my radiation, I was taking Xeloda, an oral chemo drug.  Now that radiation is finished, according to the protocol of the study, I'll be on Xeloda and Navelbine for a few extra rounds.

Xeloda is a drug that's commonly used in metastatic breast and other cancers, which is not my situation, but it's very effective and in most circumstances, well tolerated.  Unfortunately...it's also known to be a radiation sensitizer.  Which means it made my skin very susceptible to radiation wounds, and sure enough, I developed some big, impressive areas that are missing the top layer of skin.  They'll take a little while to grow some new stuff. 

In the meantime, I'm getting creative with clothing.  A bra is out of the question right now, so I bought some men's V-neck tee shirts that fit tightly and hold righty down, and I pin a light foam foobie inside to create the illusion of lefty's presence.  Then I wear a big, comfortable shirt on top. 

Like a good friend says, "temporary is tolerable."  This too shall pass. 

Dizzy215

Sorry I haven't posted in a while but I've been keeping up with all your comments  I think I'm just a little over 3 weeks post rads and completely healed too - just a slightly tan area where the boosts were. Enjoyed a great vacation in Rhode Island . 

Started Tamoxifen 2 days ago, so far no SE's.....keeping my fingers crossed but not looking forward to my period in 2 weeks time.  Mckenna, what an awful time you've had. I have been lucky enough to avoid periods for the last 10 years or so, since I had the Mirena coil inserted, but had it removed after my diagnosis as it contains a little progesterone....so, here I am again with the dreaded monthlies....what a drag.     

Interested to know what follow up's have been arranged with you girls, particularly in relation to mammo's?? I saw my MO 3 weeks ago and stupidly forgot to ask what i should be doing and who is in charge of all that, him or my BS?  seeing my BS in a couple of weeks for my 3 month check - will he want to see a new mammo and in fact, will my insurance pay?  Questions, questions.....

mckenna

neeners, please let us know what is going on.  how scary.  i will not complain about my cramps again.  i hope this is not serious.

sb, you are still only a week post rads and actually the worst of mine started at 7 days post rads and was much better 14 days post rads and then a lot better 21 days post rads.  so maybe you still have hope of healing in 3 weeks.  so i am not familiar with chemos.  are these drugs you are taking pill form or iv?

also, my bad bood is like the incredible shrinking boob.  at first the size difference was just noticable when i did not have a bra on, now i can notice it even in a sports bra.  i may have to purchase some swiffer cloths to suppliment :O

nancyjac

Dizzy,

Since I had a bilateral mastectomy, there is nothing left to do a mammogram on.  I don't know why your surgeon would want a mammogram 3 months after surgery.  I'm assuming he had a pathology report after surgery that showed clean margins?  I think most insurance coverages will pay for one mammogram a year (same with bone density scans).  I remember one year I got scheduled for my annual mammogram like 2 days before a full year was up since the last one and they had to reschedule me so that my insurance would pay.

Neeners815

mckenna - I go to the cardiologist tomorrow.  They did an EKG and there were definitely skips.  Also, my bp was high.  Lord, it's always something, isn't it?  For now no tamoxifen for me.

mckenna

Neeners glad you will ne seen tomorrow. All of this sucks.



Dizzy my last mammo was sept 2011 and my cancer was found on an mri in march. I will have mammo at my end of sept BS appt. U may have a post surgery mammo on the cancer boob at your next BS appt. I have ro follow up in aug and mo follow up mid sept. After sept. Appts I am hoping to get a 6 month break but I am nott hollding my breath

SusannahW

Neeners,how worrisome. Hopefully your bp and skipped beats will resolve quickly.

Please let us know what the cardiologist says.

BLinthedesert

Oh Neeners ... I am so sorry.  Please be careful and check back in when you have more information.

Dizzy - I have a follow-up mammogram that is 6 months after my last mammogram. My RO wants one 6 weeks after radiation is finished (to wait until things heal up - so it won't hurt) - for her, she counts this as 'new baseline' - it just so happens that this will coincide timewise to August!  I have a MRI in October - 6 months since my last one - because they are 'watching' a suspicous area.

My "schedule" will be trading off seeing my BS and RO every 6 months, and I am hoping to go back to yearly mammograms.  I am also hoping the MRI shows "nothing" so I don't have to have another one of those for a long while.  I have really dense breasts (I broke a biopsy needle - that was fun) -- so I am pretty sure I will have ultrasounds every one of my BS visits.  My RO said that if my BS discharges me all my follow-up will be with her - but I think my BS said that he will be seeing me forever - my friend who has the same "team" says that somehow they co-ordinate together and all the orders get written.

 Happy Tuesday ladies -- thinking of you all!

sbelizabeth

Neeners, years ago, when I started a new and very stressful job, my heart did the same thing.  I made the rounds from my primary care MD, to a cardiac work-up, and then a cardiologist.  The cardiologist was unconcerned.  She explained that stress sometimes induces these premature and skipped beats.  Sure enough, my rhythm settled down in a few weeks, and it's been fine since.

I hope it's nothing serious for you as well, and that you're given a clean bill of health.  Like Roseanne Roseannadanna (remember her on Saturday Night Live?)...."it's always SOMETHING."

jittersmom

Neeners....I had a simular thing 2 years ago and I now just take a beta blocker to help..I have bouts of it now with the BC and I just keep in mind my heart is strong and try to relax which of course is easier said than done! i will keep you in my prayers

STLmom

Hi everyone

I hope everyone is having a good week. The heat is starting to make me feel like a caged animal.

neeners- hope your heart is okay. I have a leaky heart valve and murmor that seems to have held up well during all the BC excitement. They did make me have a stress test before surgery.

Dizzy-- The RO's office booked my follow up with them in January and told me they would order a mammogram before. I am nervous because I had a breast reduction along with lumpectomy so everything has been shifted around from previous years mammograms. I saw my PS yesterday  and he was pleased with my progress and no skin break down from radiation. I did not have a lumpectomy scar because of the reduction. He told me breast tissue can continue to change for a few months after radiation but skin should be fine.

AEM47

Ok, I'm on the fence and need some opinions.  Rads were done 7/12 and I'm still staring at the bottle of Tamoxifen.  My RO said to start in a couple weeks from finishing rads, my MO wanted me to start during rads, But the Nurse in the RO office said they like to see people start by 4 weeks after rads.  My problem is that I hear that the side effects, if you are going to have them, are the worst around 6-8 weeks....I have a vacation coming up Aug 13-23 and would rather not go thru the vaca feeling anything other than normal? whatever that is these days.  Right now I'm taking DIM, which from what i read, metabolizes estrogen "correctly".  Can I get some feedback on what everyone else's RO or MO has told them for timing on starting Tam??? 

Neeners815

AEM47 - My BS had me start it right away.  Now having said that, I had some heart issues yesterday and she told me to go off it a week and then start it again.  I'm really debating even taking it at this point.  It saves me 5% and I'm not sure that is worth it considering the potential SE.  My mother had cancer of the uterus and I don't like thinking I am increasing my odds with that one.  I need to talk to the BS again next week.

Thanks all for the lovely comments. I had a sonogram and the heart had a bit of a leaky valve, but no big deal (apparently I had this before and totally forgot (?)).  The doctor is having my thyroid tested.  He doesn't think it's the tamoxifen.  He said the sort of flips I'm having are not dangerous, just annoying.  I might need to do a halter monitor at some point, just to be safe, but that's up to me and if my heart keeps flipping.  Today the flips have decreased substantially!

mckenna

AEM47, first i have never heard the 6-8 se thing, so i guess i have 2-4 more weeks to test that theory .  my MO said to start 2 weeks after rads, so i did.  we were supposed to be on vacation this week but it got post poned because i just wanted to be fully healed and couldn't be for sure.  anyway, i really wanted to wait til after vaca to start, so i get your worries. 

neeners, glad they don't seem to think it is anything too serious, but swcary just the same.  hope the "flipping" continues to decrease.

stl, this heat is beyond rediculous!!!  i hear we are going to cool off to 96 degress this weekend then back to 106 on monday.  my kids' school does not have A/C, i don't see how they can start school at the end of august if this keeps up.

sb, how is the skin, any better today?

have a nice day!

sbelizabeth

Mckenna, in what part of the country do you live?  I can't imagine a school not having A/C, but I live in California, and it can get pretty warm here.  It's about 85 degrees today and I just got home from work.  We'll get out there and ride pretty soon and take advantage of the evening's cool.

The skin breakdown is gradually healing, thanks.  The big one is developing little skin "islands," tiny spots of baby-fresh skin that gradually grow together.  I'm still covering everything with cream several times a day.

Neeners, how's the ticker?