Coping After Treatment - Summer 2013

Lenn13ka

Paula- I had only very mild fatigue during rads or the first week post . It has crept up the past couple weeks. Along with the memory thing. I called one of my clients by the wrong name today....

Ninja6812

Take it easy Lenn and don't overdue it. We all just need to remember that our bodies have been through SO much and it's going to take time to get back to normal. However, I don't even know what that looks like.

It's funny you mention brain fog. I don't own a business, but am an insurance agent in a very busy office. I feel foggy a lot, but I think it comes from brain fatigue. Concentration takes effort.

Hang in there ladies!

Ninja6812

Paula, just looking at your dx & treatment plain, how are you healing from surgery? Have you had any trouble with swelling and discomfort? Any lymphedema? So happy you are done with rads! Going to talk do doc about the Claritan. I'm glad I found you ladies. And Lenn, lack of mental clarity is perfect description of the "fog."

patriciahurtado

Ill be jumping to this soon ... I will finish rads on August 22... But I burning under my arm pit ewwww.... Im BRACA 2 ER-PR- HER2+... So Doc says no hormonal treatment for me just to eat healthy and work out!!! I'm really scare too

IamNancy

I am noticing how tired I have been lately - its been 6 weeks since last treatment but all of a sudden fatigue is really getting me... I wonder if its an end result of everything or the armidex...

BayouBabe

Fatigue is huge for me, too. I am beginning to wonder if I will ever be close to my pre-cancerous self again. Kind of depressing. Lose my train of thought easily as well. I go back to work in a high school working with special education students in two weeks. Scared to death, they are going to be able to run all over me.



Also a bit depressed. Had my appointment with my lymphedema doctor today. Thought I was doing really well since my exchange surgery, and felt like some of my swelling was down. Machine that measured me shows an increase in swelling. Ugh. I am so sick of all this cancer nonsense. Even at the end of the treatment road, it still seems there are so MANY cancer related things to do each day/ week. Depressed.

Lenn13ka

Bayou Babe -  Try not to stress out about going back to work too much. For me, as much as it has been a challenge working during all of this,  it has actually been a saving grace. It is something I am good at, have some kind of control of and get some rewards from.... plus, it has made life seem a little normal. There have been days that have been totally  overwhelming and I have said "What the hell am I doing this for"...but all and all, I am glad for it. You do something that is very important and special, working with special ed students. It sounds emotionally and physically challenging, but maybe it will help things seem more normal for you right now. Did you schedule your surgery because it was your summer break? Listen to Ninja's advice and take it easy on yourself when you go back. What did your Lymphodema Dr. say to do to help get the swelling down?

Thank-you for that advice Ninja. Yesterday was a terrible day with cognitive problems and fatigue. I read your post, put the after work invoicing down, had a glass of champagne and reclined for the entire evening. My energy today was MUCH better. Right now, my house is a complete disaster - but I don't care...going to the same tonight. One thing I decided today is that I am going to become a note writer. I never really had to do it before but, last night, every time I thought of something, even the smallest thing, that I needed for today, I wrote it down .  I made sure to look at it all day.

IamNancy

Lenn- jotting things down in a note is so helpful...it takes so much energy sometimes to remember things-much better to just read the note... and good for you for relaxing last night with a glass of champagne!

Ninja6812

Lenn I keep notes for everything on my IPhone. I get an idea, need bread, call Dr, all goes in my notes. My I phone is my lifeline to so many things. Bought a book and downloaded on my iPad/iPhone called "dancing in limbo." It was recommended in another discussion about life after cancer treatment. So far very good.

Goodnight! Heading out for a work retreat this weekend. Golf and lymphedema will be a challenge for me, but massage is also on the agenda

Bayou Babe-hang in there! Pace yourself. A day of overdoing will take you two to recover.

FriendGwen

Hi ladies! Glad to find this thread. I finished chemo in March and rads at the end of May. My energy has been returning and I have been feeling like myself except for a bit of brain fog. Today has been kind of weird. As I got up from my kitchen table and walked across the room I felt dizzy like vertigo. I felt that way for a while. Since then I felt a little nauseous. Now I have that burnt tongue feeling like we'd get a couple days after chemo. Fortunately it's not affecting my taste buds but why the burn feeling? I see my GP on Monday so maybe she will have some insights. I'm wondering if this is part of chemo five months post, or the taxotere, or something not related to cancer treatment at all.

Lenn13ka

Welcome FriendGwen...Hope everyone is having a restful, summer weekend.

Lenn13ka

Ninja- I heard about that book. I purchased "After Breast Cancer". One thing it said was from the amount if time you were diagnosed,until you finished treatment is the amount of time you should allow yourself to feel better. Hope your lymphodema didn't hurt your golf game!



Nancy - I see the MO on Tuesday, I will let you know what she says about the tamoxifin.



Paula - how are you doing post rads?



Gwen - good luck with your GP. Keep us posted.



Bayou Babe - hope you did something special for yourself this weekend.

Anonymous

Lenn~~Post rads has been the toughest part of this whole WAR! I had a mx & 5&1/2 months of chemo, but this beats it all. I'm seeping, skin is off in a couple places, tight, hot, sore. The worst of this is the tightness. It limits my movements. I'm using Aquaphor & Tylenol, and amazingly, I feel better with a bra on.



I need to find some kind of clean white cloth to wear inside my bra for church this morning.



Have a Blessed Day

Paula

BayouBabe

Good afternoon ladies! Hope everyone is having a good healing weekend!



Paula - I did not have chemo, but post rads was awful for me. Fatigue hit like a brick wall. I used men's Hanes t shirts for quite a while under things, as they were gentle on my burnt skin. Have you had any PT? This did wonders for that awful tight feeling. I still do several of my stretches from my PT therapist daily, and it helps a lot.



Ninja and Lenn - I need to look for one of those books. I think I am too hard on myself at times, and these would help be a gentle reminder. Thanks for the suggestion!



Iamnancy - I smile every time I see your name. Nancy was my late mother's name, and I think of her a lot lately.



Gwen - good luck with the doctor tomorrow. Hope you get some answers!

Anonymous

Bayou~~the tightness I mentioned is caused by the tightened, burned skin. It's only temporary. I can still reach behind me to hook or unhook my bra, but the skin on my sternum is just so dry & tight it hurts when I stretch.



I do feel the tiniest bit better today though.



Paula

Ninja6812

Paula, have tou tried Domeboro's solution? I tried the Aloecream, hydrocortisone, and aquaphor. Helped a little, but I found great relief from Domeboro's. It's a soak that you apply to washcloth and apply to your burns. Lay down and place it on your burns. It really helped me at the end when I was raw and skin weeping. Available at Walgreens. Hope you feel better soon.

Robin3

Now that you ladies are done with active treatment, is anyone starting Tamoxifen this month? I took my first pill today. And as usual with each step I'm paralyzed with fear. I know I need to take it, but I'm so afraid of side effects. I had a talk with my pharmacist and she helped relieve some of my fears. But man, some days I just want to pretend this isn't still happening.

Lenn13ka

Robin - I have been on it for two months now. I started it during Radiation. The first month I had no side effects at all, but they sort of kicked in the last few weeks. It is hard to tell what is post rad and what is tamoxifen (fatigue and lack of mental clarity). I have had some joint pain and mild hot flashes. I know a lot of people on Tamoxifen who have no problems with it  at all (sister, friends,) so I wouldn't worry about it.  It may not be that bad for you. I only have to take it for 2 years -switching after that..so I am glad to be 2 months down already.

I have learned more about what to expect post treatment on these boards than from my Dr.s... I meet with my MO tomorrow for the first time since May 15 - the day of the dreaded chemo/no chemo discussion. It will be interesting to see what she says.

Paula - Sorry to hear about you "post rads" problems. Hope they clear up soon.

BayouBabe

Paula - hope you are finding some relief today!



Robin - I am not on Tamoxifin, but Femara. I am making a game of it. I save my empty pill bottles to help with the 5 year count down. 3 months per bottle, 4 bottles per year, 20 bottles total. I have a Baggie with two empty ones already. 2 down, 18 to go. ( I sure hope they don't change the guidelines to 10 years for Femara. I will be devastated! It has not been kind to me at all.)

Anonymous

I had to go to the cancer center for a port flush today, so I called ahead to see if the RO had time to see me. She said, " as surprised as she was last week at how good my skin looked, she was just as surprised today at how bad it looks now." I just wanted to be sure there's no infection.



No infection, and she gave me Silvadine ointment, and a couple of Cooling Gel Pads. I feel so much better tonight.



When I got home I had calls from both my PCP and my onc telling me, " I have lost 60% bone density loss since Feb. 2011. So they both want me on Fosomax. I'll start it next Monday. Tomorrow I start arimidex. I already have my Claritin.



Paula

Lenn13ka

Glad you feel better today Paula!

I had my MO visit today. We had a big discussion about Tamoxifen, side effects and whether that is the best hormone treatment for me. Then , she look at a "cord" that is running down my side from my lymph node region to my waist and thought it might be a blood clot. Off to ultrasound and waiting to hear from her. If it is a blood clot...off of Tam and onto an aromatase inhibitor.I guess it is the way it is going to be.

melody46

Paula glad to hear your feeling better.  I've been on Tamoxifen for two and half months.  Are fatigue and fog  SE's for it?  The fatigue is getting better but i still feel like I'm in spaceland alot. All I've noticed is some achiness in the joints and god awful hot flashes, but the hot flashes started right after chemo. 

Lenn13ka

Melody- I saw my MO yesterday and she said that tamoxifien can cause the "fog". I too am finding the fatique a little better but I do notice that when I am getting tired the brain thing gets worse.

One thing I am doing for the fatigue is to make sure I am getting 70 grams of protein/ day, which is hard. A breast cancer nutrionist at Dana Farber said that is what your body needs to repair all the damage from treatment. I have been really good about it . Wondering if that is why I am feeling better??

My MO is looking into whether I have a blood clot. If I do, I am off Tam.

HHCats

I'm new here and hoping I'm on the right thread.  Kick me off if I'm not.  I just finished recovering from my DIEP surgery that I had in April.  I just had a full workup at a private healthcare clinic in Canada (where they found my breast cancer last summer) and all looks great.  That was Friday and my nervous breakdown began when I got home from that appt.  I got good news and I freaked out.  In fact, I've been a real witch since Friday and last night just started coming out of it.  My husband gave me a little pep talk last night about how lucky we are it was found so soon and there is no evidence that it spread.   Now I am the picture of health (with short hair!) and at this check up last week - I actually did better on the fitness test this year than I did last year.  

Life is getting back to normal.  But I am struggling.  I know I am supposed to live like it is never coming back but it is hard - I have three young kids (6,6, and 9) and everytime I think about what this year was like for them (they were superstars) and what it might be like for them to lose me - well, I lose it.  

And I am losing it now just typing that.  

Any words of wisdom would be appreciated.  

Anonymous

Lenn~~I'm curious! How is your MO looking into whether or not you have a blood clot?



The test takes about 5 minutes, and they know immediately! I developed a blood clot in my femur area. DVT (deep vein thrombosis) at the end of AC. I had severe pain in my left foot & calf, so MO sent me to the ER. They did a Doppler (ultrasound) of the leg. I was wheeled straight back to the treatment area, which took about 3 minutes. When I got there, they told me, it was a clot, and I was put on Lovenox injections 2X daily for 4 months. I would have only needed them for 5 days, but because it was believed to have been caused by chemo, they had me continue until I finished treatment.



Ask your MO what they're doing to check. Blood clots can travel to the lungs, brain, or heart. That's not good. I don't mean to scare you, but find out what's going on. DEMAND ANSWERS!!!!

melody46

HH Give yourself some time.  I was speaking with a 15 year survivor who said it takes a while for the fear to subside.  Its completely normal to be emotional about this, I tucked my head and got through this only to find it emotional after the last of my scans, mammo blood work were complete and came back great. That was 3 weeks ago and I find my patience thin lately. Let yourself cry, you've been through alot!

SpecialK

Ladies, just wanted to chime in as someone with more distance on the end of active treatment.  Generally, the further out you get from treatment the better you will feel.  I felt a big difference at about 6-8 weeks.  I still have some nagging, but relatively minor, but potentially permanent side effects from treatment and from taking aromatase inhibitors.  Nothing, aside from lymphedema, that causes me too much of a problem, and I have no regrets about any of my choices. It is very common for the end of active treatment to be almost as stressful as the very beginning.  We sometimes get that feeling of not being watched closely enough, and what if something happens, etc.  Also, at the end of active treatment we are often physically and mentally tapped out.  I was very fortunate that my breast surgeon volunteered me for a study in conjunction with the University of South Florida School of Nursing and Moffitt Cancer Center, looking at stress reduction post-treatment.  This was a quantified study (blood and saliva samples) of whether or not mindfulness-based stress reduction in the form of yoga and meditation in a classroom setting for six weeks could reduce the amount of the stress hormone cortisol.  I have found the techniques very useful in not looking back, or too far ahead, and being focused on the moment I am living in right now.  I have used the relaxation techniques prior to subsequent surgeries, PET scans, etc.  Understanding that you can't control the future, and that worrying about it causes you stress right now that may be harmful, and learning how to let go of that is hard, but a good thing to do!  I wish you all the best, and hope that each day is better for all of you!

HHCats

Melody46 and Special K - thank you for your kind words and advice.  I am trying to stay in the moment.  Especially since my kids are home for the next two weeks before school starts - I'm trying to just enjoy the chaos and fun.  It's hard since my patience is thin but I am getting better.  

Lenn13ka

Paula - thanks for your concern . I was sent right up to ultrasound . The Dr. Said he couldn't see anything but also said he didn't know what it was. He was a "doogie howser" type and wasn't all that reassuring. I was waiting to hear back from my MO as to what she thought. She did call me that night and said she was sure it wasn't a clot but also not sure what it is! So I will be following up with my GP this week. I have taken a couple of days off to relax at the beach.



HH - we were all dealt a bad hand and it is hard to accept that BC will always be in the background. But, Special K is right....Be here now! Enjoy you beautiful children and getting ready for school and all the chaos...you have the right to be angry and sad too... But try not to let that tarnish the beautiful moments as life happens. Be kind to yourself.

Lenn13ka

Hope everyone is having a restful, healing weekend. Bayou Babe - I am thinking of you. How are you doing with you return to work? I hope things are going OK for you.



Paula- also hope your skin is healing.