How long? Why? When? (Long ramble to follow)

SofieKatz

Not sure if this is the right forum for these questions, so please bear with me.

 Had #4 a/c (over 8 weeks) followed by #12 weekly Taxol.  My last Taxol is this Thursday.  Then I will have a short (5 week) rest from treatments (while I finish running the children's day camp I run all summer) before #25 doses of radiation.

The taxol was waaaay nicer than the a/c.   But is it my imagination that I am more tired as the doses accumulated?  I was able to walk the dog and be active through the first 6 weeks.  But now, 2, 3 and 4 days after treatment I am extremely enervated (confined to my recliner all day yesterday) and it gets a little better each day, but worse than when I started.

Or is this the new Me?   Tired and lazy?

Now, let me add that for the last 3 weeks I've been very active during the week  running a children's day camp (#48 kids).  I figure that must account for my weekend fatigue.  (Hell!  I'm 58, and during camp no one can tell I am on chemo.)

My hair started growing  the second week of taxol, so now it is growing (pathetically) for about 10 weeks.  

So, my questions are:

1.  Should I push past the fatigue on weekends or rest up?  (I miss long walks with my dog!)  Pushing sets me back, but maybe I'm just deconditioned?  

2.  How long will it take after taxol to be "me?"   Will I still be tired 3 weeks after my last dose?  If I am, should I push harder?

3.  My hair is now very short (actually, shorter than short) and sparse.  But it grows daily.  When can I expect a head of hair that is short but I can style?  

3.   Taxol ends 7/28.  Radiation should end by the end of September.  When will I be me again?

4.  Do I get scanned after all this?  Who decides that?  Breast surgeon?  

5.  Do I let the BS know I am done with treatments? 

Thanks. 

NatsFan

Sofie - chemo effects tend to be cumulative.  I always count as the complete nadir of my treatment the day I was sprawled, exhausted from nothing, on the sofa and wanted a seltzer from the kitchen.  I pulled myself up from the sofa, walked to the kitchen (maybe 20 feet) and stood in front of the fridge.  The thought of actually pulling on the handle to open the fridge, then leaning in and picking up the can of seltzer, then closing the fridge door, then going to all the effort to pop the top and open the seltzer, then having to carry the seltzer all the way back to the sofa - whew!!  I couldn't muster up enough energy to do all that!!  I sighed, walked back to the sofa without the seltzer. Pretty pathetic!

Like you, I was working full time during chemo, so I really really crashed on weekends. You are NOT tired and lazy!  You have had deadly poison pumped into you for months - no wonder your body is tired!!! Yes, the poison is killing the cancer cells, but it is also stressing your entire system.  It does get better - I'm 3 years out and I jog, do mountain hikes, elliptical, do yoga, and weights/resistance training.  But it takes time to recover.  My personal advice to your questions?

1. Don't push through at this time. Your body is still trying to deal with the poison.  Do what you can, but listen to your body and give it the opportunity to recover from the poison.  

2. Yes, in all probability you will still be tired 3 weeks after your last dose.  You will probably be able to do day to day things, but any extra exertion, like a stressful day at work, a late night out with friends, or a weekend of gardening will wipe you out.  This is normal.  Someone on BCO once said that for every month you were in active treatment, allow 2 months of recovery.  That's pretty accurate.  Not that you'll be a complete couch potato during that time, but you are not going to be able to sustain the level of pre-dx activity for quite a while  

3. My last chemo was in June.  By Thanksgiving I was able to ditch the baseball caps (I wasn't a wig person).  I used a lot of gel to spike it for a biker chick kick-ass look - it was fun, especially for a previously-staid 55 year old.   I don't think I got my first real haircut till March. 

4. I didn't have rads, so I can't help you with that one.

5. My med onc has ordered scans.  She did a PET/CT one year after active treatment, and does them again in anniversary years - 5 years out, 10 years out, etc.

6. I still see my bs every 6 months.  

Good luck - do what you can, but remember how stressed your body has been and give it time to heal.  

Claire_in_Seattle

Hi Sofie....

I exercised throughout treatment.  My take was that I might as well be exercised and dragging.  I had Taxol once every 2 weeks, so I had a slightly different experience.

First of all, I hear you on being so done.  I would say it took about six weeks to get to the point where I was power walking again.  Then two very energetic weeks prior to radiation kicking in.  I cycled anyway, as I was training for last summer's cycling events.

My hair did not begin to grow back until about 8 weeks post final Taxol.  I still wore my wig for about another month.  By that time, I had had it, and it was the end of June.  I put color over the "dead mouse pelt" and wore uber short for the rest of the summer.

My hair is now about an inch longer than in my picture.  I had a long period when it looked a bit odd, but I had decided not to be picky.

I have not had any scans.  Not at diagnosis, nor since.  Not unless there is reason to suspect something may be amiss.  I did have a mammogram about 5 months past radiation, and will have than annually.  It's not standard practice in most places to do scans.

However, I was treated in a place where all care is coordinated, and all medical records are online.  At this point, my oncologist and internist are the two doctors responsible for my care.

I got my first haircut about 5 months after my hair started to grow back in.  It was short and shaggy.  I am working with my stylist to let it grow into a chin-length bob.  I color it myself.

When will you be "you".  I think that happens in stages.  I did a major cycling event w/i six weeks of finishing radiation.  I certainly felt like "myself" then.  And I did for most of the summer.

However, I was not ready to move forward with my life.  I mean I was fine working, and doing all sorts of physical activity.  However, I went through a period of dislocation which ended exactly one year from the end of chemo.

Two major things came together.  I looked like myself once again in terms of hair regrowth, and I was suddenly at full energy.  My oncologist also said I was 100%.

I have since gone on to new personal bests cycling.  One day, as I was planning a new adventure a couple of months ago, I looked in the mirror and said "it's over".

Good luck.  It will happen, and you will be fine.  - Claire

ruthbru

1. You should walk your dog! It's OK to go slow, but I think important to keep moving.

2. You will be tired for a long time.  I once read that for however long you were in treatment, it will take that long again to get back to full speed. From my experience anyway, it's a lot longer than that (but if you do keep moving it will come).

3. It took me 6 months before my hair was long enough to ditch the wig.

4. I felt about 100% better during radiation than during chemo.....really felt my energy go back up...but everyone is different on that one. Pay attention to your body; but again, getting regular exercise on whatever level you can manage is important and will actually increase your energy.

5. Your oncologist will decide about scans, follow up appointments etc. Ask what your schedule will be and whom you will be seeing.

Hang in there! Things will get better. Ruth

SofieKatz

Update:

 9 days after last taxol (12th infusion) have been the worst since I started regarding fatigue.  Worse, last week, in a window of feeling better, I overdid it (shopped at BJ's) and spent the next day pretty much exhausted through my body, through fingers and toes.  My fault.

 My hair is growing daily.  All except my eyebrows.  But it is still encouraging.

 It is very difficult to take exercise ( walking the dog for 30 or more minutes) because I can only do it in the small wiindows of feeling better.

Saw the onc radiologist.  I have a simulation on Weds.  I think I get a non-diagnostic cat scan then.

 I took three days off from work this past week (a week's break from running the day camp) and have 2 more weeks of camp starting Monday.  

 Here is a few minutes from camp 2 weeks ago.  A clean-up race, where the kids compete with each group to clean their tables and play area:

http://entertainment.webshots.com/video/3035367770032500126WmxCSd

 I hope to feel better next week.  Thanks for all the answers to my questions and support.