Sunday, March 9, 2014

How did you feel the year after treatment?

I'd like a little favor from those of you more than a year past treatment:  How did you feel in that first year, once treatment was over?  I have a question about this from a reader—how do other women feel?— and have discovered this has not been that well studied.  There are a lot of "you should feel" suggestions through various cancer organizations, but I have not found any decent actual research.


So I would like us to at least have a discussion of this.  I am lucky to be so far past that first year that my memory is not all that strong, but I do know I was extra tired and had pain in my surgical incisions, and some pain generally around my chest, which I was told was related to radiation.   That pain is gone and cancer has not returned, so whatever it was ended up not being any sort of a threat.  My energy level still is not anything to write home about, but I tend to get a lot done, and I am fairly committed to regular exercise, so I think I am doing just fine.  (Yay!)

So, how did you feel in that first year?  (Or how do you feel, if you're now in that year?)  Do you think you got more colds and other viruses/infections than normal?  Do you feel you had a weakened immune system?  For longer survivors, how long did this last?

There is a lot we can do to keep ourselves healthy, and this reader is already on that—she is eating healthy and maintaining a healthy level of physical activity.  Still, she has been getting a lot of colds and she wants to know if other women feel like she does.  And, even though she did not say it, I think she wants to know if this is going to go away soon.

I'll post this on my Facebook page so you can discuss it there, or you can comment below.

I think we will all feel better once this awful winter is past and we can get our usual doses of natural vitamin D.

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15 comments:

Anonymous said...

I felt weakened and very tired most of the time. I felt like I could not plan anything. Kinda lost. Here is an example. I have a mailbox that I always had walked to before, after treatment it was like walking up a mountain. I also live in a bi-level, so after going out to the mailbox, it was up two flights of stairs. I could barely breath. That first checkup after treatment was the absolute most horrible fright I have ever had in my life. I was ok though. I was diagnosed at age 47, I just turned 53. I can say that on July 30, 2008 the day I was diagnosed, I didn't think I would make it this far. I recently had my mammogram and ck. up and am doing well. It has taken me a good few years to come back. I just got home from a beach vacation and I feel good. I finally feel back to my new normal. It seems for ever, but it will happen.

Anonymous said...
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Anonymous said...

My last chemo infusion was on Dec 31, 2012. My oncologist said that I, as a TNBC patient, had 2 big mileposts to pass--6 months and 2 years after the last infusion.

I am 69 now. I had BMX, chemo, but no radiation. Grade 3, high proliferation rate tumor. Being on chemo was not so bad at the start, but by the 4th & final infusion, I felt so tired, so miserable, so fuzzy-headed. I did not know what the future would bring, but I bought a treadmill so I would never have an excuse for not getting regular exercise. I do about 3-4 miles about 3-4 times per week.

I have faithfully kept at it & tried to keep my diet low carb, organic--as healthy as possible. I would say that I did not feel like my old self until about 10-12 months after that last infusion. Somewhere in there, I started feeling a burst of energy.

I am an artist who had not painted all through treatment & beyond. Then one day I wanted to paint. My oncologist says that I am the wellness phase so I should start focusing on my health & on enjoying life instead of on cancer. He thinks I will sail through my 2 year milepost. Hope he's right!

Callie Carling said...

I was diagnosed with TNBC in May 2011, aged 40. After 2 ops, chemo and radiotherapy, I thought I was over the worst but ... life has been really difficult to navigate! I was exhausted through radiotherapy and so very sore: I trained as a Laughter Yoga Teacher and that sorted out my radiotherapy tightening but still I was emotionally strung out ... almost 3 years on, I have fantastic days, I have deep-depression days. I'm hoping that once I have my bilateral mastectomy operation (deferred reconstruction), I can really move forward.

Patricia Prijatel said...

FROM ARLIS VIA EMAIL: I was diagnosed two years ago and treatment was completed in October of 2012. My energy level is not what it was before but I don't know if that is a result of the aging process or chemo (I am 69 years old). Generally, I have ben pretty healthy. Neuropathy in my feet bothers me sometimes. I do pilates twice a week and sometimes I am a bit clumsy in moving from a sitting position to a standing position because of lack of strength in my toes. My eyes burn and tear a lot. I have prescription meds to help. Again I don't know if this is a result of chemo or allergies which have been especially bad this year in Central TX. My breast is sensitive but I would not call it painful. Otherwise my health has been good. I eat a lot of crucifers, blueberries - avoid fatty foods per recommendations for the prevention of recurrence. On the days I don't have pilates, I walk two miles. On the average I exercise 5 days a week - seems like something comes up - early meetings etc to prevent me from daily exercise (excuses!) I struggle with a few bad habits. I drink too much diet Coke, have 6 - 9 alcoholic drinks in a week and I eat too much (my efforts to lose weight have not been successful yet - I keep trying). I am pretty active from a social standpoint - church, bookclubs, politics. I get a flu shot every year. I think the emotional component has been the most difficult for me. I worry about recurrence and I think the neuropathy and breast sensitivity bother me more because they are reminders of my vulnerability. Oh, my hair never grew in as it once was - it used to be thick with a lot of body - now it is thin and limp. Another reminder which bothers me on my "vanity" days.
I hope this is helpful. I would like to know the results of your survey.

Patricia Prijatel said...

From a reader, via email: That first year right after my treatment was over I felt completely lost and afraid. I was tired for a long time. I am 4 years out and still do not have the energy I used to have before cancer but just 6 months after my chemo I was diagnosed with Hasimotos thyroiditis so I know that was interfering with my recovery. It has gotten better but is still an ongoing struggle.

Gabrielle said...

I'm now in my first year after treatment. Diagnoses jan.2013, I had a mastectomy and removel of my lymphenotes. Chemo (6xtac) ended in june 2013, radiotherapy (25x) ended in 2013.

I feel very good actually. Started working again sept.2013 and slowly building this up. I'm working 28 hrs a week again, my full contract as a casemanager dementia.
I go to the gym 3-4 times a week, have 3 teenagers and oh yes...I'm 41 years old at this time.

The negatives : sometimes sore ribs, oedema in my right arm and armpit (but very good to manage) and when I get tired I'm really really really tired, like exhausted. But that's maybe 1-2 times in a month and also good to manage and lasts about 30minutes. I never had that before my diagnoses. Going to the gym or doing something actieve helps a lot to pas that moment.

My periods Started again last month (thank god) and I am very happy about that ;-)

I live in the Netherlands, Europe btw.

Emotionally it goes okay. Good days and bad days.
I've done a mindfulness group and that was okay. At this moment just the check upps in hospital 2-3 times a year and that's it. I'm planning a diep-flap breastreconstruction but sadly the wait is about 2-3 years here in Holland :-(

Julia Gandrud (aka JuliaLikesFrogs) said...

Thank you so much for doing this!

My radiation treatment ended January 6th, so I'm now 3 months out.

I am still tired, and need at least 9 hours of sleep or I feel shaky. Low levels of estrogen and progesterone help this, as well as getting enough calcium. Plus, in the beginning, melatonin and Ativan just before bed.

The HRT has also helped immensely with my sex life, which makes everyone happier. Both my oncologist (at Dana Farber) and my endocrinologist approved the HRT, by the way.

I can now exercise without being totally out of breath, and jump on the mini trampoline, etc, which I wasn't really able to do even a month ago.

I am getting over a cold now, but I have always had a so-so immune system. I am taking vitamin D, iodine, omega-3, and will be taking a light dose of thyroid med (Acella) to help boost the whole system.

The bacteria in my gut took a brutal hit, so digestion is an issue, but I'm taking probiotics (threelac) to help.

I am brca1+, 39 years old, and my cancer was (!) triple negative, Stage II, 2cm, type 3.
I had ACT, a "nipple-sparing" double mastectomy, double oopherectomy, and radiation plus a very low concurrent dose of cisplatin.

If all that helps anyone, hooray!
Take care,
Julia

Rachelle said...

I finished chemo at the end of August, 2013 - so I am about 7 months out. My hair is almost 2 inches long and I have completed reconstruction from double mastectomies. I had stage 2 triple negative, type 3 - 4 cycles of A/C and 4 of Taxol - no radiation. I am now 41 years old.

I still have discomfort from the reconstruction (expanders and then implants) and my port scar/area aches at times. I do love my new boobs - went from a concave A- to a D cup - my one silver lining. My skin seems to have suffered quite a bit from the chemo. My arms and hands look like they are covered in tissue paper - it wrinkles like the skin of a 90 year old. I feel (and look) much older than my 41 years.

I get really exhausted a couple of times a week - and have to go to bed before my kids (ages 7 and 9), but also have good days where I almost feel normal. I am trying to maintain a good diet of lots of plant-based foods, low fat and no sugar. I still drink Diet Pepsi - my one vice. My exercise goal is an hour of walking a day - and I am currently getting 3-4 days in.

I went back to work full time 6 weeks after I finished chemo and 1 month after my second mastectomy and expander placement. This was too soon - but my employers had graciously waited 6 months for me while I was in treatment. There are many days when I would give another body part to lay in bed all day...and there are many weekends where I spend at least one of the 2 days sleeping and laying low - to recuperate from the week. Getting dinner made at the end of the day has been a huge challenge for me - and something I am still struggling with. By Thursday and Friday nights, I am so tired it's a free-for-all at our house for dinner.

I have had huge ups and downs emotionally since finished treatment. At my 3 month checkup I read an article in Cure magazine about triple negative - that stated that if triple negative cancer comes back it is fatal. My oncologist had never mentioned this - and I was in a tail-spin for the whole month of November. I have times where I become completely obsessed with "what ifs" about my cancer returning. I want to see my kids grow up. I fight with my emotions daily - trying to keep back the "why me's???" and the panic - and I am slowly getting better at just living in the now. I think extreme stress was a huge player in why I got cancer in the first place, so I am trying to live a peaceful life of acceptance.

I have been sick twice since I finished chemo - the flu and a cold.
My period has just come back - something I wished and wished for - a bit of normalcy for a body ripped of everything that made me a girl.

Big hugs and love to all of you out there - those going through this terrible disease and those lucky ladies who have it in their rear view mirrors. We are not alone.

LoLa Getting In Tune said...

I had bilateral mastectomy in June 2012. Chemo thru Dec 2012. Radiation thru March 2013. Had to wait obligatory 6 months till exchange surgery. Now recovered and surviving!! In my spare time I became moderately active in hospital based BC support group and activities including light exercise ; reading BC blogs of many ... some living and striving, some of whom have unfortunately passed away. Lucky to follow TNBC Foundation message board and Metaplastic BC site. The worst is being the go- to person for friends and acquaintances who are newly diagnosed. Was lucky to find an ultra supportive physical therapist specializing in BC patients. Patricia 's readers have reminded me of the little things like chemo brain, having my port flushed, blood draws, worrying about co payments, reconstruction surgery and bill, bra search, first haircut, dye or no dye, eating right, gaining energy, worrying about lymphedema, to sleeve or not, wine guilt, pursuing CAT or PET scans, follow up appointments, returning to work full time (really), hubby and kids, church and loving me and my new normal. How am I doing?

Anonymous said...

Patricia, I am so glad I found your book, and your blog! It is so reassuring to read something other than 'gloom and doom' about TNBC. THANK YOU!
Thank you so much for asking this question. Julia and Rachelle's comments helped, since our cases seem similar. My chemo treatment ended 12/19/13, so I'm now 3 months out.
I have regained some energy, but that will be challenged when I return to full-time work this week.

I am triple negative, and BRCA2+, Stage II, 2.5 cm.
My chemo was 4 cycles of A/C, 2 of Taxol, but had horrible side effects and had to switch to Taxotere -no radiation; I had double mastectomies, reconstruction with expanders and gel implants. I am not thrilled with the outcome, went from a D to a B cup. I turned 52, 2 wks after chemo ended.
Thanks for a place to share and learn from other survivor sisters!
All Will Be Well,
Maryann

Anonymous said...

I finished chemo March 22, 2013. I had a bilateral and DIEP flap reconstruction on April 22, 2013. I have been up and down the entire year. Back working out, eating well and healthy, raising my kids (I am 44 and have three kids, 7, 7 and 9) and living the life of a stay-at-home mom. I am tired more often than before but I'm not sure what that is really from - the kids or the treatment. I was watching the calendar intently for the 2nd (my diagnosis was Oct 2) or the 24th (my lumpectomy when I was considered cancer-free) for a while. Now the day can pass and I realize it i has gone by and I haven't thought about it. I have a check-up this Wednesday. Just a clinical exam. No tests unless symptoms. But I am starting freak a little. I am proud of how I came through TNBC but still worry that I am not doing enough to thwart another battle. I am doing what I can though and that has to be good enough.

Anonymous said...

Chemo brain so severe I withdrew from completion of my doctoral dissertation. Neuropathy in feet causes falls, has cost me my professional.position (nursing educator), and documented nerve damage in hands causing severe weakness. Surgeon recommends bilateral carpal tunnel and trigger finger surgeries but am hesitant to risk further damage. I am 20 months post diagnosis of Stage IIB, grade 3, 0 node 5cm TN with lumpectomy, ACT and prone rads. I am 67.

Anonymous said...

Hi all good to see all these same symptoms and reassuring
I had lumpectomy 26July 2013 grade 3 triple neg no node involvement ,chemo finished Dec then radiotherapy finished March 2014
I did ok throughout the treatment or so it seems now chemo was bad towards the end but radiotherapy ok just really tired
I've used homeopathy remedies which I think gave me energy but when I stopped the tonic noticed a difference with tiredness returning I find this frustrating as in my head I feel I should be fit and healthy and try to do normal things housework meeting friends dog walking but even a week's holiday in the sun relax in left me drained and aching
My main problems are sore feet and aching knees getting going on a morning is a real problem and I feel more tired now.
I think it's hard now the treatments finished as its a waiting game and knowing there is no treatment attacking any cells can be hard to put out of your mind all the aches and are possible recurrences but I put this to the back of my mind and have the approach that what will be Will be it's no good thinking what if I will deal with the what if if it happens
This is how I have had to be don't want those feelings to remain of first been diagnosed
It good to see from others that months after the symptoms are the same as others the rib pain the tiredness,sore feet, chemo brain
My friends compare me to them and their menopausal symptoms they think I am normal now and will be even more normal when I'm back at work in September .I've been lucky to have a good length of time off but I don't know how I'll manage full time will need to rethink my job and hours
I didn't loose my hair used the cold cap did go thin though and I cut it really short first time since been sixteen I wasn't blonde didn't like it and no one could advise when to bleach I did highlights in May and feel better now I'm me the hair will stay short but not too keen on the waves!!
First mammogram approaching so anxious convinced there's something there so will be glad to get to end September
Can't walk the dog like I used to and get breathless up hill see others get breathless so feel better knowing this
Think it's hard when head feels ok and body not quite there
As everyone keeps telling me my bodies been through a lot and needs time to heal trying to do the healthy thing but it's hard do appreciate life and friends though and wake up glad to be here
Good to see others are doing well and its not all negative for is tnbc

Anonymous said...

I am coming up to a year finished treatment on September 11, 2014. Triple Negative Stage 1 Grade 3 0 nodes. I had a Lumpectomy February 13., 2013 followed by Chemotherapy and Radiation. My Oncologist told me I should not be feeling the effects of treatment anymore. However, I still tire easily and have low energy at times. I get short of breath and my bribes get very sore. Each time this happens I get very anxious about the cancer coming back. I hope in time my physical health and anxiety will change.