Feet and hands numbness + pre rads information - any advce?

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Got through my last docetaxel less than 4 weeks ago and felt utter relief as I had experienced really bad joint pain and muscle weakness - which hasn’t gone yet of course.

 

Since my last treatment I have developed uncomfortable numbness in the feet and to a lesser extent in the tips of my fingers. Legs and feet are a bit swollen too. Reading older posts it would seem this is due to docetaxel and most forum members have had little or no support from their oncologists. Does anyone have an up to date solution please? The discomfort is worse during the night in bed. Is there any specific exercise or activity which helps?

 

My week hasn’t gone well as in addition to above I had my pre radiotherapy scan and the radiologist told me that long term because my cancer is breast, I shall be susceptible to lung damage and/or rib damage from radiotherapy and this can’t be avoided. She asked if I wanted to proceed on that basis and I replied that there didn’t seem a choice to which she replied ‘there’s always a choice - it’s up to you.’ Then she let a young male trainee who looked around 12 draw and tattoo on my breasts! Has anyone else been alerted to the lung/rib damage?

 

I also have what I can only describe as ‘pulled muscle’ pain in my chest - does anyone know if this is related to docetaxel? Hurts badly when I breathe in and out.

 

I guess I sound like a real moaner but am feeling poorly and a bit low - sorry.

 

Beatrice

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Hi Beatrice, I’ve had 6 of doxetaxol completed it 3 weeks ago tomorrow. Have similar feeling in feet and fingers as you prescribe it’s called peripheral neuropathy and according to the oncologist I saw Tuesday caused by the chemo, he said will take some time to go and may have some degree for ever but thus isn’t common! I’m struggling with muscle weakness to especially when having to go uphill or upstairs. I feel 90 not 48, I find a walk does help daily but does nothing for fingers and toes, a hot water bottle gives some relief . Chemo just keeps on giving. I also still can’t taste many foods which is a real pain as shops full of nice food.
No one mentioned lung/rib damage when I went for rads planning!!!
Can’t help you with chest pain when breathing but sounds musculoskeletal , coud you have pulled a muscle?
Ps, your allowed to moan when you’ve been through chemo, good luck with rads and happy Christmas x

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Morning Beatrice

 

Sorry that you aren’t feeling so good.  As you say Beatrice it really doesn’t feel like we have a choice and I’m sorry you experienced such flippant comments and child labour at your unit.  I remember being much younger and my Gran saying the Doctors were ‘bits of kids’. I didn’t appreciate her feelings but i now know how she felt having had my previously very personal areas manhandled by young staff and trainees.

   

I would like to be able to say ‘all this will be gone in a couple of weeks’ but i don’t reckon you would appreciate such a blatant stab in the dark.  As Lois said it does take a while for the numbness to go and rarely it can remain to some extent. We really are all so different.  My Oncologist didn’t tell me that initially but the side effects leaflet that i was given did include Peripheral Neuropathy.

 

For me one of the problems that the professionals face is that if they told me everything that might happen I would just be overloaded with information and panic but it certainly feels like my Oncologist missed some pretty crucial stuff.  Nobody at all has ever mentioned rib or lung damage and by the time i got to Radiotherapy (which i had last) i was a bit calmer and more able to process information. 

 

Re. Muscle weakness.   I am not very patient so although i only finished Chemotherapy end February i asked for Physio referral in April and was seen early May.  The Physio gave me exercise to build up my muscles but he did say he usually sees people much later on so to take it easy.  Did the exercises for about 5 mins initially (i was exhausted by them) building up to 1/2 hr 2/3 times per day.  I guess it helped to feel like i was proactive in my recovery.  I also swim 2/3 times per week but wasn’t able to start that until after Radiotherapy. I have picked up from the forum that often professionals have slightly different ways of working but i think the goal is usually the same.  I could send you a copy of the exercises the Physio gave me to give you an idea.  I would say that there was a significant difference with in about 6/8 weeks and back to full strength by the August. Physio was great with an interest in diet and we discussed the benefits of Oily fish and lean red meat in assisting the body to build muscle.  I also eat red fruits plums / red grapes every day as there is some evidence that they assist in the repair / maintenance of the capillaries (trying to ensure good blood supply generally).  

 

Peripheral Neuropathy.   I too didn’t experience the numbness until the end of my Chemo and was shocked that although my feet were numb they were so painful. ?  It was good weather fortunately so i could wear  fit flops.  I had to create a little igloo over my feet at night or put them out of the covers.  Physio explained that this is because the pain receptors are one of the most prominent.  This numbness wore off gradually but not completely for me.  So after 6 months, August / September, i started to look what else i could do. Neuropathic pain doesn’t seem to respond to usual analgesia but does respond to Amitriptylene, Pregabalin and Gabapentin.  I wanted to avoid any more toxins (i am a bit bonkers Beatrice) but these medications are very effective.  I found something called Qutenza (lots of info re this on internet) which is a treatment based on Chilli where plasters are placed on the bottom of your feet and around your toes (not for the fainthearted) but not sure how widely available it is.  I think there is also a cream based on Chili.  Clinical Nurse Specialist said they wouldn’t refer until at least six months post Chemo.  Following referral I had this in November at The Christie and my feet do now feel like they belong to me again.  It can be repeated every 90 days if needed.  The Consultant is an Anaethatist / Pain Management Specialist specifically managing Post Chemotherapy patients.    

 

I will never know Beatrice if I’d been more patient my muscles may have repaired and the Peripheral Neuropathy gone completely on it’s own without these treatments but that’s just me I’m afraid… Still trying to practice the Mindfulness and Praying for Patience.  Mindfulness is not so easy and i think God reckons I’m all out of requests just now.  

 

Beatrice i wished I’d kept a diary throughout my treatment but from memory it was a very gradual but definite recovery but just wanted you to be aware there are lots of options.

 

I hope you will be well enough to enjoy Christmas and maybe a small glass of something red. 

 

Sorry it’s a long post folk’s but i wanted to ensure all the details were correct and didn’t want to miss anything out because i personally find that can cause more worry.

 

Take Care.  Gilly. x   

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Hi Beatrice…having ‘communicated’ on another thread, our experiences seem quite similar! In an attempt to reassure you, the radiologist has a duty to advise you about any potentially serious side effects of RT (litigious society we live in, sadly). Mine mentioned leukaemia, then blithely told me she had only seen 1 case in the 10,000 or so patients she had treated…please don’t let me be number 2 I thought silently! If you have had your pre-RT CT scan, they will have images that slice you up like a cucumber, and will be very, very careful to avoid lung, rib or heart damage, even though they won’t give 100% assurance. For example, I was going to have 15 RT followed by 4 electrons; however CT showed that tumour bed was very deep, close to chest wall so 15RT followed by 8 very targeted high doses would be safer. Most of the time spent on the RT bed is shifting you about…making and checking very, very precise measurements and then the RT bit is over quite quickly. The radiographers watch everything that’s going on, and if they are concerned, can stop the machine. As the RT has to ‘exit’ the body somewhere, my understanding is that this is where rib tenderness can occur, along with an itchy rash on the shoulder blade!

With regard to swollen feet and PN…my feet looked like they belonged to an elephant for about 4-6 weeks after the end of chemo…I used to sit (or lie) on the sofa with my legs very elegantly elevated on the back of it. I experienced PN in my toes and finger tips…this has improved quite significantly (finished chemo 17 months ago)…quite a weird feeling actually as each toe regains feeling…only big toes and ones next to them are still tingly! I still wear flip flops constantly or Ugg boots. Do get some odd looks in supermarket wearing flip flops in December though :slight_smile: Finger tips are still lacking in a bit of feeling and I am a bit more ‘fumble fingered’ than I was…however being a naturally clumsy person, don’t think anyone notices!

My Onc said to make sure I had food high in B vitamins and Omega3, taking a supplement if necessary (she is a believer in the holistic approach) and include plenty of spinach, broccoli, almonds, brazils, sunflower seeds, a daily bowl of porridge and potatoes as they contain something (that I can’t recall) to protect the nerve endings.

Keeping a diary was one of the things I did do through treatment, which sort of kept me sane and prepared so I felt more ‘in control’ even though I pretty much wasn’t…hence my recall…just as well or chemo brain would mean I remembered not a lot!

Gilly has some great tips, including walking (which is one of life’s best natural medicines). Had to smile at the ‘patience’ part as my Headteacher asked the other day how I was so patient…I explained it was a ‘learned behaviour’ as patience is not one of my virtues!! Sorry can’t help you with the chest pain…however, use the two week rule and if it doesn’t improve please get it checked out.

Wishing you all the best for a lovely Christmas…x

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Hi I have awful pain in my feet mainly. They are so very cold I could cry at times and have to wear special socks all year. At night my right foot is worst I wear bed socks but get terrible cramp in my feet and legs. Keep waking all the time. Also loosing the skin on my feet. Why is the right foot worse. Walking now is painful and wobbly.