Coping After Treatment - Summer 2013

Hi Ladies.....having been there three years ago, here some things I can offer:

• Enough protein.  Your body needs it to heal, and I found I didn't have energy reserves after chemo and radiation.  Extra protein really helped.  Excuse too for eating steak, etc.
• Exercise.....important for everything under the sun: energy, clear thinking, good body, stamina, risk of recurrence, heart and lungs, skin, sex life, looking fab in clothes.
• Make up consultants are your friends in creating a new look.  I used all the body creams on my breast following all the aloe etc.  The bonus is that both breasts have much nicer skin than before.
• Do fun stuff!!!  Make a list and work it.  Because living well is the best revenge.
• I didn't do Claritin as all that stuff makes me feel like I am crawling out of my skin.  I don't need that one.
• Don't drive yourself nuts focusing with being "perfect".  Cover the basics and have a good time.  Forget sainthood.

And oh....three years later, I am at a new and exciting phase of my life.  Doing my best work ever.  Fun things such as vineyard camping too.  I will say that moving forward takes work, but that the rewards at the other end are more than worth it.

So hang in there and good luck. - Claire

Just got an email from the Y.  The received the med release from my BS. Yay! My final rad was Aug 2 and Livestrong starts 9/16, so that's about a month and a half from end of Rads.  It should be ok.  I didn't have breakdown of skin problems, tho I had some other Rad SEs that they don't acknowledge are Rad SEs, lol.  And I still have some other suprise issues from time to time but they seem to be short-lived and mild in comparison to what we have all been thru.  And I'm never quite sure if it is something I need to watch/be wary of or not.  Not sure I'm going to good at being ever-vigil but will try to be more aware of my body and any changes or tweaks or pains, etc.  No rest for the weary!

Does anyone know if Claritin helps with the SEs from tamoxifin? Apparently I'm the 1 in 200 who has bone, muscle and joint pain on top of the fatigue, fog and depression it's not supposed to cause.

Also, anyone have diep unilaterally? What did they do with the good boob?

Patricia, vent anytime, that's what we are here for! So sorry to hear your news. But I agree, it's better to know than not know. Praying for your daughter's test to be negative.

Lenn13:  hope your lymphedema appt goes well and they give your effective treatment.  MGH and DanaFaber are well known centers.  Do you know why they use Tamo for 2 yrs before AI?  Is there a study out there?  The reason I as is that I will bring it up with my MO at my follow up appt and see what he has to say...   I go to a teaching hospital here and would hope they are up to date.   (Tho I did have to "discuss" the non-use of Adrymicin in my chemo plan with my MO). 

Ps: Love hummus, but lately nothing is easy on my digestion.  Maybe it's the heat...

Awwww my ladies ... This is what makes us stronger!!!! Together .....



Well my daughter is doing fine we had talked a out this .. And she's mentally ready .. But we all know how it is when it actually happens .. Fear ... Lost...hurt... Devastating ... Then we turn to warriors ....... So I talked to our genetic lady and she said that its better to wait for a few years ... So I will ... My mother did not have breast cancer her 2 sisters did... They are 20 year survivors today .... They live in Peru and I asked about their stage but I guess they don't know cause one said she had stage 4 but doesn't know about grade so I guess u don't even know their stage ... One had mastectomy and my other aunt had lumpectomy ...



I hope everyone is feeling great on this Sunday!!!

So my ladies has anyone had hysterectomy done???? I have it done do to my BRCA2 .... It's schedule for November .... Sex drive dies ??? Hot flashes ??? Hormonal treatment may cause recurrence ??? Omg ... Can't sleep and I go back to work today ... With 1 foob and the other just a muscle...I hope i don't get emotional.... To top it all of we are having a lunch for all our staff!!!! ... I will be welcome back on the big red carpet .... No tears pleaseeeee!!!

strangely the joints that hurt are the ones where I use to have problems, hips (occasional bursitis flare up), rotator cuff (had surgery there years ago) and a new one the knees.   I've been taking claritin for years for allergies so I dont really know if it helped with the neulasta shot or the tami. 

Claire,


I really appreciate you encouraging words and advice. It's important for women in the throws of this to hear that there is light at the end of the tunnel. I had my last Taxotere , Carboplatin and Herceptin cycle Friday the 13th and now move on to 12 more Herceptin only and RT for a month. Then an AI for 5 years and perhaps a switch to Tamoxifin.



I was a big runner and had just finished a half marathon when I was diagnosed. I still train (weights etc.) 3 days a week but my miles are down to maybe 3 a week. Will be able to step that back up soon.



Thanks again for your encouraging post!

Catherine

Hi Catherine....  I continued cycling on weekends throughout chemo and radiation.  Wasn't easy, but I did it and think I had a faster recovery because of this.  I did two 45 mile cycling events immediately following radiation.  One was 4 days post radiation, and the other was 12 days.  I was dragging, but still proud of myself for finishing.  I would normally have done the 60+ mile course.

One of these (Livestrong) was super-challenging because of the exceedingly foul weather.  I still remember cycling into Renton not being able to see where I was going.  When I called a friend the next day to check in, she said "o good, you're still alive'!  Never has a post ride soak in the tub been more appreciated.  (I didn't submerge the part that had been zapped.)

You will get back to running.  I found I needed more stuff such as GU gel to keep going during long distance cycling events (>40 miles).  I just did a 60 mile hilly ride today.

So don't assume you will need to sideline yourself during radiation.  You may need to, or you may be OK.  My guess is that you will build strength in the beginning and then need to dial things down.  That is what I did, and it worked just fine. - Claire

I don't have normal drainage, but I don't have any real issues either.  I do need to exercise that side to keep it all limber and strong.  Right now, I don't have any swelling post ride.  If I wear the wrong bra, I notice it, but sometimes looking foxy is really important.  My weights routine works just fine to keep everything working.  Plus, keeps my top half looking buff.

I have chatted with my current oncologist about this, and she thinks I am just fine.

I had plenty of lymphatic fluid moving today.  Without going into the gruesome details, I learned by cycling with a drain just how much you create when doing vigorous aerobic exercize.  Today was much more so.

I never went to PT.  Post surgery, I was sent home with arm exercizes, and I did them every day.  (I have a dancer friend who was on my case about this.)  I just asked my surgeon if I could resume my weights/crunches post drain, and she said "yes"!  So that is what I did.

I was worried about x-country skiing (elevation of 3000+', repetitive motion).  But I was just fine.

Speaking of skiing.....I need to look for some spectacular DOWNHILL pants.  My old ones didn't survive my foray last February.  Thinking of vintage Bogners.  I have Prada x-country....eBay is great.  Much as I love cycling, skiing is what makes me feel most alive.

Hoping I can do the Hog Loppet this year.  Haven't done since diagnosis.  Three years ago, the weather changed, and I wasn't trained enough when the day came.  Two years ago, I had a trashed ankle, so couldn't do the downhills in a snowplow.  Last year, I had gone to the Methow Valley.  But they cancelled due to high winds.

Hope this helps.  My takeaway is that more exercise is better.  Let me know how skiing goes.  Jealous. - Claire

I've been lurking rather than posting the past few weeks because life has gotten super-busy. School has started back up. I'm easing back into that routine and am very thankful I can carry a light credit load this semester. We'd also decided to relocate and have been packing, spiffing up the house, and getting it on the market.



I'm with Claire in thinking that exercise helps, if you're able to. I couldn't keep up with my normal routines but am now easing back into them. I'm not comfortable wearing a bra yet, so running is still out. I am getting out everyday walking, both more distance and at a better pace. Being back on school means carrying my heavy book pack 1.5-2 miles 4 days a week. Being busier andnmore active is definitely helping my moods and attitudes. I've tried out abbreviated versions of my core work and upper body weights and am slowly easing back into that. My most fun weights was last Saturday. We visited a friend whom I haven't seen since prior to diagnosis. In that time they've adopted a little boy who is now 16 months old! I did a lot of toddler lifting both in play and in providing lap time. I never had or wanted children but I do adore visiting with other people's children. I don't think I've smiled that much since before my diagnosis.



I started tamoxifen on last Sunday. No SE's yet that I'm aware of. Trouble sleeping is normal for me. Some waves of nausea last night, which is very unusual for me, but might not be the T. There's a bug going around campus, the not sleeping, and also a lot of shooting pains in the treated breast last night. If it were associated with the toddler play, I would've expected it to hit Monday or Tuesday, not Thursday/Friday. It's sort of generally sorer too. Since ibu & acetominophen wasn't touching the pain, I caved and took my very last oxy tonight. I haven't had one for nearly a month.



I noticed I still have skin peeling over the radiation field. I'm still aloeing twice daily. The skin beneath looks fine. I'm not worried but am surprised that my peeling is at its worst when I'm just over a month out from my last rads.



Oh yah, the Herceptin. My MO explained that it generally isn't used for smaller tumors. I explained that I've read of its use with t1a and b women. In fact, there's a thread right here on BCO dealing with that. She explained that she feels the risks, mainly a 1-2% chance of heart failure, are not worth a dubious and unproven benefit. She also explained that tamoxifen is just as appropriate for post-menopausal women as pre or peri, which I've since verified elsewhere. We also talked about the SE's of T being somewhat less than those of some of the aromatase inhibitors.



I'm on the fence about seeking another MO. I liked that this one took the time to explain. I don't like that she was guessing/assuming about what I wanted to do instead of asking. Apparently I had so many questions about the tamoxifen that she assumed I didn't want to go on it - and didn't bother to ask or verify. Seems like a minor complaint, now that I've talked about it, but it makes me wonder what other kinds of miscommunication we might experience if she's making assumptions of which I am unaware. On the other paw, she was very responsive today when I called this afternoon to get a letter to excuse me from some class activities.



@Claire - do you know about Sierra Trading Post? I've gotten some great deals on ski gear there, including pants.



@Lenn13ka - Sounds like we share some interests! I learned downhill skiing several years ago right here in MA thanks to some very good instructors over at Berkshire East. Have you seen the New England Lost Ski Areas (nelsap) website? A lot of interesting info & history about many of the little local hills now gone.



@Amy - good luck growing your hair and lashes!

Hi there...thanks for the encouraging words! I've heard that about RT. I'll be receiving hypofractationation so will be done in 4 weeks. One of the benefits of small breasts I suppose. I am tired of being tried tho. Can't wait for all these appointments to end!



Catherine