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Syndromes of symptoms three years on.

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jackie the dancer View Drop Down
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    Posted: Nov 20 2019 at 10:33am
Hi All
I am an active 71 year old leading a busy life. In February 2017 I was disagnosed with TNBC and subsequently had a 2cm lump removed from one breast. The cancer had not spread to surrounding tissue or to my nodes. I had chemo and radiotherapy and my treatment ended in December 2017. I now have access to a specialist nurse and regular checkups at the hospital.
I had an easy journey through my treatment, I was very fortunate. There was the odd negative side effect and I was tired sometimes, but I was able to continue my activities,  completed a work-based doctorate and danced with Move Dance Feel a dance organisation for women involved with cancer and had a personal exercise trainer provided by an UKCancer charity. I joined a lovely American fiesty on-line group for TNBC moderated by  Breast Cancer Care and I appreciated their support. (the moderator suggested I join your organisation when I contacted her recently).

I thought by now, nearly, three years on, that I would be back to "normal", feeling well and in many ways I am - I am dancing several times a week, attending meetings and socialising.I am leading a healthy life-style and love being a grandma too!

However, over the last four months I have been experiencing "syndromes of symptoms" that have gradually become intense and then ease off or disappear.
The main ones have been
  • hormonal - I got the menopause in reverse! Night sweats, hot flushes, not being able to sleep or waking up and not getting back to sleep. I really thought I might get my periods back!!!!!! My husband joked that I shouldn't get pregnant!!!!! It was worse than my actual menopause.
  • a cough that got worse. It was not caused by a cold or flu. I had  tingling or itchy tonsils. Not constant, but it started to encroach on my conversations or attending meetings.
  •  "white noise" in my brain, some twitching, sensations of vertigo  and pains in the back of my arms when I started eating. 
All these have now subsided but I am still not feeling my normal self.

I have been to my GP but she has not been that helpful. I have had blood tests and all is well.I take no medication except for one pill for my thyroid.

I think it is most probably the aftermath from the chemo and radiotherapy and hopefully all will subside and I will get back to being OK. I definitely live each day as it comes and get the most out of each day, enabling others and enjoying myself and being active.

The last six months have definitely been worse than the actual cancer treatment. My GP thinks it might be related to stress and psychosomatic but I don't think so.I had a fulltime, reponsible often stressful career and never got ill.

Being physically ill is a new experience for me. I wonder if any of you are having similar or other experiences following treatment. You think you are getting back to normal and then symptons appear, get worse then disappear then reappear?

I had many positive experiences whilst having my chemo and radiation. I am a positive person and was aware of all the love and support I received from others. I made some interseting, caring new friends and enjoyed the various hairstyles/no hair styles.  I am supportive of others and there definitely is life after fulltime work! I look forward to receiving your comments.
Thanks in advance
Jackie from London UK 
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Nov 20 2019 at 2:54pm
Hi Jackie,

Loved your note and writing style.  Very enjoyable read.  I too have had some odd symptoms post chemo/rads.  Mine is a feeling that my motor is running (internally) at rest (almost an internal vibration if you will).  It comes and goes but really bothers me.  Almost like the central nervous system was affected.  I also get headaches intermittently and I have never been a headache person.  The rib cage pain (lower left side) was really unbearable for about a year after my treatment but that has seemed to clear up.  My MO is unconcerned about the symptoms when I mention them to her.  I still see her every 6 months.  I hope this helps you know that some of us have strange oddities.  I too am very healthy (other than getting cancer) and active 58 year old new grandma :)  Take good care ~ Penny     
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Plume View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2019 at 7:11am
Hi Jackie

I am hoping that my comments might help you.  I'm about your age (70) and had my diagnosis in the same year (june 17)

I had many symptoms like yours.  The worst was a cough that lasted over 9 months.  The coughing was so violent at times that I dared not go out.  It affected my appetite:  who wants to eat when you might cough until you vomit?  It affected my bladder control:  who wants to go out, even for a walk when a fit of coughing makes streams of urine course down your trousers?  Obviously nervous of going into food shops and supermarkets because I couldn't cope with the accusing glances of other shoppers looking at me coughing over the food.  Not to mention going to a concert, for example, for fear of ruining the enjoyment of others.

Eventually, last year I was referred to a chest specialist who gave me antibiotics, doubled my asthma drugs and prescribed a course of physio (kiné respiratoire in French).

Repeated urinary infections were dealt with by antibiotics and a long course of "friendly bacteria" to reset my immune system.

The insomnia persisted for all of the 3 years and only last month was I prescribed Amytriptyline.  It's really a drug for depression but it calms me down suficiently for me to fall asleep and to re-fall asleep when I wake up during the night.  Before last month, I'd be lucky to get 4 hours or less.  So, I do understand about what you said re inability to fall asleep and certainly inability to go back to sleep again after waking.  I'd wake up perhaps about 3 am and not sleep again for the rest of the night.

Also last month, during a routine medical MOT (you'd understand this, being British!), my blood pressure was found to be very high at 195/108.  It was taken on about 5 separate occasions with more or less the same high readings.  Now I am on a drug to lower it and this it has done successfully.

As I see it, the only thing remaining is the shaking of my hands.  I hate it!  I am not a nervy sort of person and I don't get fazed by much but the shakiness gets so bad sometimes that I can't hold up a cup of tea without spilling.

Very much like you, I am generally in good physical form, never been overweight and never inactive.  The cancer and its treatment has, as we say, taken the stuffing out of me.  I continue with all my activities, climbed in the Pyrenees earlier this year and even delayed one of my chemo sessions to walk with friends over a long weekend.

So what I say to you is:  the sorts of symptoms you describe seem to more or less be "normal" following op, chemo and rad.  Hope my reply helps you.  Do continue till you drop; I certainly expect to!

 
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2019 at 10:38am
Welcome Jackie the dancer,

You write so beautifully.  I miss this beautiful style that most of us have lost in our hurried, quick email, tweet, text message life styles. 

I'm 9 years out from treatment and still have some residual side effects that have lingered.  Most of them are minor and I've just learned to deal with them:  ringing in the ears and slight neuropathy in my hands and feet at times.

The only symptom you posted about that would concern me was the cough that has gotten worse.  Have they done a chest x-ray or scan on your lungs?  I was always told if a symptom lasted more than 2 weeks and did not get better, to contact the oncologist.  There could be other causes for the long lasting cough than cancer related.  What does your medical team say it could be?

Please stay in touch.  I'm in awe of your active lifestyle and achievements all the while going through treatment.  You definitely had more energy than me!

Take care,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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jackie the dancer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackie the dancer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 7:00am
Dear Penny
Thank you so much for your reply. I found it very reassuring. Sorry I did not reply for a week, but I have not been near my computer because I have been busy at dance rehearsals and looking after my grandchildren and attending some meetings. Hey ho!

I think is sounds as if we have to just have to be aware of changes and report them and accept that various symptoms will come and go! I am definitely not suffering as much but new ones are coming and going. I too have muscular pain on my left rib cage especially if I lean across my body or put socks on, so it is reassuring to know that it does subside eventually.

So enjoy each day, and take what comes.

Thanks again

Take care and enjoy being a grandma.

Lots of love from rural Devon, I am away for a relaxing weekend and clean air!

Jackie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackie the dancer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 4:47pm
Dear Penny
I wrote to you earlier today and I sent it but there is no way of knowing whether you received it or not because it has not appeared on the screen. So I hope you got my first message, if not I hope you get this one.

Thank you for sharing your experiences, I found your message really reassuring. It sounds as if we have to accept that there are symptoms that come and go over several years. I hope you are enjoying life now especially being a grandma.

I am taking each day as it comes and just monitoring and noting if anything is concerning and then will report it to my special nurse or doctor. Like you I also have muscle pain on the left side and it is reassuring to know that yours did subside in the end. I have to be careful when I bend over and pick things up across my body or when putting on my socks!

Thanks again for your very thoughtful, interesting and kind message. It has really helped.

Now I am going to press the "post reply" button and see what happens.

Best wishes from rural Devon, SW England, I am on a restful weekend breathing fresh air and going to the sea tomorrow before returning to London.

Take care

Jackie
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 4:50pm
Hi Jackie!

I received both messages.  Thank you :)  Getting through this one day at a time with wonderful friends like you.  Be well!  

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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jackie the dancer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackie the dancer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 4:55pm
Dear Plume
Thank you so much for your interesting and very kind message, I really appreciate you sharing your experience with me. You poor thing having to suffer such an awful cough but it sounds as if you have been looked after well and receiving sound advice and care.
It is very reassuring to know that other women are having similar experiences to ones I am experiencing.

Take care and I hope you maintain and develop your good health.

Best wishes from rural Devon, I am having a restful weekend and lots of fresh air!!

Jackiexx
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jackie the dancer View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackie the dancer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 5:07pm
Dear Donna
Thank you for your message. You have been very reassuring, and I really appreciate you sharing your experiences.
I hope you are enjoying life and although it is nine years on for you and you are still getting some symptoms, it shows how brave and patient you have been and you are working with your body well. Thanks for the advice about my cough. I am just monitoring it at the moment. It is not from a cold or my chest, it is more tickly tonsils and then having to cough to remove the tickle. I think it might be either inflammation and gathering dead white blood cells or maybe some kind of allergy.

I am busy and active and I find it really wonderful to dance. I hope you have a hobby that you enjoy because it is lovely to share an interest with others,make friends and have fun and be creative together.

Thank you again
Take care

Jackie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackie the dancer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2019 at 5:25pm
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