Coping After Treatment - Summer 2013

Lenn13ka

I am starting this thread for all of us finishing up treatment this summer and beyond. If you are anxious about being on your on, feel like you have been "hit by a bus", wondering about how new hormone treatments are effecting your body or just trying to get back to living - this may be the place to continue sharing and learning...what breastcancer.org does best!

BayouBabe

Lenn13ka - thank you for starting this thread! I just had exchange surgery last week after a year of hell. I have surprised myself at how depressed and angry I have been this week. Angry at cancer, angry at family that were non supportive. Exhausted from everything. It has definitely been a roller coaster. I didn't realize how much I had been holding in until now. Not sure how to go on from here. I go back to work for the first time since December in just two weeks and am scared to death. Ugh!

Lenn13ka

Bayou Babe - a lot of the ladies on Summer rads were saying the same thing so I just posted over there this morning. Now What???? I have read through a few of the older threads about this subject and they have been helpful but I thought it would be useful to have a forum for everyone going through this now.

I know I am am in the "hit by a bus" category...trying to come to terms with all the decisions that were made in the beginning and just move on with life.

IamNancy

now that treatments are all done, it almost feels like none of this ever happened! except for the medication... however, I feel very impatient now...and a little emotional.. is it the meds or just me trying to get on with my life??

Lenn13ka

I know what you mean Nancy. I can't tell if it is the medication or what.. This is the first chance I have had to step back, rest a little and look at what just happened. I had to work through the whole thing so , although it was a distraction, it also prevented me from dwelling on what was ahead. Plus I am exhausted so I am really trying to get my energy up. All the Dr.s are saying my expectations are too high.



Bayou babe- I am angry that the way I looked at my life has changed. Always the healthy, active optimist ... Not so much right now, especially with this fatigue.

BayouBabe

My heart aches for my kids. They are 10 and 12. They have lost a lot of their innocence, but I am so proud of how they have handled themselves. I worry when the day comes when they are old enough to put two and two together and figure out exactly what being my being BRCA + means for them. Life just really sucks at times. Those thoughts alone cause me much fatigue. Sigh.

IamNancy

BayouBabe - I really feel for anyone who went through this and had small children to care for.. I am older so my kids are grown..but I did work throughout treatments and it kept life "normal",  I guess...

Anonymous

Lenn13ka~~Thanks for starting this thread. I finish rads tomorrow. I was dx at Stage IIIc, and everytime I see my MO, she questions me about pain, because she's suspicious of bone mets to the shoulder and lower right spine. Just before rads I went through a battery of scans to rule out mets. The bone surgeon found no abnormalities.



The scans were in June. I saw the Mo again on July 29, and she's looking concerned, asking me about pain, and reminding me, we have to keep an eye on this. Scans will be repeated in December.



I've had bursitis in this shoulder years ago, and have degenerative disc disease. So I have twinges of pain if I'm extremely exhausted, or just before it rains. Tylenol takes care of it, and sometimes it just goes away on its own.



I'm really glad she's so caring, and thorough, but everytime she asks me, it stirs up the worries again. It's as if she believes, " It's not IF, it's WHEN!"



Paula

BayouBabe

Soteria205 - congrats on finishing up rads! You will not know what to do without having an appointment everyday!



Sorry to hear about your pain. Are you on an AI? I, too, have degenerative disc disease. My Femara makes things much worse. I also went through scans, as MO was worried about mets as well. Turned out I was all free and clear, just an increase in aches and pain with addition of Femara. Ugh! Could this be a possibility?

Anonymous

BayouBabe~~I don't start arimidex until August 20. My MO told me to give myself a weeks break between rads and starting the ESD (estrogen sucking drug).

I did take it for a few weeks right after dx. I postponed surgery for a few weeks due to insurance issues, and doctors wanted me to be doing something proactive.



Claritin really helped with the bone pain, and I will be taking it again when I start back on arimidex next week.



Blessings

Paula

BayouBabe

Paula - I have read that about Claritin. Do you take it every day or just when the side effects are giving you a rough day? I might need to give this a try. (Love the ESD humor! Made me smile!)

Lenn13ka

Paula - glad you found the thread. I will try to post a link in summer rads .

caitlin61

This thread is a good idea!



Soteria, I'm IIIc too, but my MO is taking the no scans without symptoms approach - and not sure I feel comfortable with that either. I did have some tailbone pain (started out feeling like pulled muscle) that started right at the end of rads and lasted for over 2 weeks - seems better now. Seeing RO tomorrow and MO in a week so will mention to both of them.



I'm now 3.5 weeks beyond radiation (25 regular, 5 boosts). I had a few days of feeling better, then about 10 days of complete exhaustion after rads. Just in the last few days, I've been starting to feel like I have some energy again. Started Tamoxifen 5 days ago and so far no obvious SEs from that. Actually, I'm not too sure what to expect, beyond hot flashes and possibly joint pain. I'm taking 2 baby aspirins a day (MO wanted full aspirin, but this is my initial compromise) since I have a platelet issue and MO is concerned about interaction with Tamoxifen.

Anonymous

Caitlin~~I would be surprised if the sore tailbone wasn't caused by hat horrible table you lie on for rads. It's been awful for me. Thank God I finish rads tomorrow.



BayouBabe~~Take the Claritin EVERY morning along with arimidex. Of course, if you aren't having bone pain maybe you could just wait, but its to prevent pain more than to relieve it. Loratidine is the generic and is much cheaper. I took it in the Am with my arimidex.



Paula

Lenn13ka

Bayou Babe  - I also feel for anyone with young children going through this. But one thing that may make you feel better about the Braca+ is that they are 10 and 12...hopefully, by the time it effects them, there will be a cure/treatment. Think of all the advances that are being made in breast cancer, especially dealing with biology and genes. I had a positive node. Not too long ago everyone with a positive node had to have chemo. Now, we have an oncotype dx test for postive nodes and insurance even covers it, which was not the case in the not to distant past. Because of that, I was able to opt out of chemo ( with the permission of one of the top BC research Doctors in the country)..not quite standard of care yet ,but almost there. We still have this stupid disease but, there is so much exciting research going on. Maybe put your faith in that for your kids.

btdemo

Thanks for starting this thread!  i am about 10 days out from last rad.  Still have "rad brain" and have to work at remembering things.  Now I have yeast infection in my mouth, like thrush that babies get.  What is up with that?  Didn't have it during chemo which is one of the SE for that.  MO said it wasn't from the chemo that ended 5/24/13 and to call my GP.  My GP gave me an Rx for dulfican (?).  So hope that works.  I start Femara the end of the week and am wondering what that will be like.  Can't decide if this whole process had been more like a roller coaster or a tunnel, maybe both.  Strength and stamina are still not back, but each day is a day forward.

Onward through the fog!

Lenn13ka

Rad brain! I still have it 3 weeks out. I mentioned it to my RO using the word "fog" and he didn't say anything. I honestly think they don't walk to talk about the side effects if radiation! I am also 7 weeks on tamoxifin. Not sure about that as well.

I am working hard on strength (PT) and stamina ( nutrition) but not much improvement. I worked during surgery and treatment. I find the post treatment fartigue the worst. Welcome Btdemo. I have to getting tired, fog shrouded body up for work. Arghhhhhh!!!

BrooksideVT

I finished rads in March, totally fogged out.  One month of short term disability, then sitting in office doing nothing, exhausted.  Finally, just a few weeks ago, "allowed" them to prescribe a short acting ritalin.  Big difference!  They say that the post rads funk can last up to about six months, so, if it's hitting you, and interfering with your work, give your RO a call and ask.

melody46

Thanks for starting this thread.  I too am extremely foggy, it seemed to get a little better a month after chemo but came back with a vengence after rads.  Thoughts of things I need to do are fleeting and dont come back usually which really bothers me. I dont know if its the Tamoxifen or just "post treatment"  I'm gearing up for a health kick and going to start swimming to see if it helps.  I'm really not feeling like myself at all and was so hoping to feel better by now

Robin3

Hi ladies, I too finished Chemo (CMF-May) and Radiation 13 days ago. I too am foggy and having trouble remembering things. But I also hurt. My joints hurt. It's not located to one spot. Today it's my hands. I actually feel like (what I think) it would feel to have arthritis. But all over. Is this wierd? I don't see my dr til the 6th. I'm sure they will tell me it's some kind of an affect. (they tend to generalize) Of course ..my way of thinking is that it's mets to my bones. (cause i too am terrified of recurrence). Has anyone had these symptoms?? Good luck to you all going forward!  

Anonymous

Robin~~Are you on arimidex? If that's the cause of your bone pain, there's hope or you.



Paula

Robin3

No, i forgot to mention, I'm going to start tamoxifen next week. :-(

Lenn13ka

Hi Robin - welcome to the thread. I am a Robyn, too ..but with a Y. I have been on tamoxifen for almost 2 months now. I started on it half way through rads. No side effects until the past week or so...some mild hot flashes, joint pain, especially hips. It is hard to tell as I also haven't been working out and doing Yoga and I got hip pain before so who knows!

 I was attributing the "fog" to the Tam but now I am not so sure. Back to thinking rads. Someone wrote the "lack of mental clarity" and that is just what if feels like!

I have my first MO visit since treatment on Tuesday. I have a huge list of questions for her!

melody46

My hips ache too I think its the Tamoxifen, I wont see my MO until Nov. so please post what you find out

Anonymous

I'm officially done with active treatment! I rang the bell 3 times today. For The Father, The Son, & The Holy Spirit!



I start arimidex next week. My MO told me to give myself a weeks break. I will be taking Claritin in the mornings with my arimidex to combat bone pain.



I'm really feeling the burn from rads. My house is a disaster, but between the fatigue, and the burn, it will have to stay hat way for a few more days.



Blessings

Paula

nihahi

eschar is a medical term for "full thickness burned tissue". This sounds confusing, as cautery is done internally....and is used to seal blood vessels. Are you meaning they cauterized your skin, externally?????

Ninja6812

Thanks for starting this thread.  I have been lurking for a long time and have found these discussion boards to be great comfort in some of my darker moments or when I just needed to find out what to expect from different stages of the treatment process. This is my 2nd post.  I finished up my rads in March and also worked (part time) throughout my treatment, but only went back to work full time in June.  I'm exhausted most days, but am pushing myself to get a little excercise each night.  I had a very positive cheerful disposition throughout my chemo, surgery, and rads.  I was good at putting a good face on everything and gained a lot of strength from the support of friends and family.  Because of everything I was going through, I was given a lot of support Shortly after my diagnosis in June 12, I planned a trip to Hawaii with my family to celebrate the end of treatment, daughter graduating from HS, and my 30 year wedding anniversay.  Oh, and I got a puppy on my last day of rads which has brought me great joy.  I find myself asking the question, now what?  I'm done with treatment, but I'm still so tired.  Not sleepy, just feeling old.  

PAULA!  Why are you taking Claritan?  Just curious as I've noticed that my chest feels heavy, congested, and I've developed a little cough.  Could this be a side effect of the Arimidex?  In the back of my mind I keep thinking maybe the cancer gone to my lungs.  Silly me!

Anonymous

Ninja~~I know you can develope a cough like that from rads, but it usually clears up within 3 months or so.



The Claritin or its generic, Loratidine is to combat the bone & joint pain brought on by arimidex. It also works for those getting Neulasta injections.



Paula

Lenn13ka

Welcome Ninja- it certainly is a little discouraging to hear you still have fatique 5 months out. I am frustrated at only one month. When I go to my MO on Tues. I am going to ask about the short acting Ritalin that Brookside mentioned. I hate to put another drug in my body but I need something. I own a business, with employees who depend on me to keep work coming in... Which means energy and mental clarity, none of which I have right now. "What did I just write? "

What do your Dr.s say about the fatique? I haven't got a straight answer yet!

melody46

Congrats Paula! Today is 2 months out from rads and I'm just now starting to see a little improvement in the fatigue but am frustrated by my foggy brain.  Lenn I too cant remember what I was thinking or doing 3 seconds ago and have my own business.  Things seem to be taking at least twice as long as they used to and I mess things up frequently. UGH!

Anonymous

I haven't noticed the fogginess from rads like I did with chemo. I hope it's not delayed. Maybe I just dodged that bullet.



Paula