I’m having Kadcyla chemo every 3 weeks. This is mostly pretty smooth w few or very minor side-effects apart from increasing tiredness. But I have tingling in my fingertips, and intermittent painful stiffness in what feels like the tendons or ligaments around my knees it I sit or lie in various positions for a short while.
The nurse in the hospital tells me this is peripheral neuropathy. I asked her if there were any exercises I could do to minimise this pain and stiffness, and she said no just do whatever is normal. It is definitely not arthritic pain or pain in the bones but in the tissue around my knee. They decided to delay one round of treatment because of the stiffness, and have reduced the dosage down to 87%, because of the risk of permanent damage. What I want to know is if there is in fact anything I can do to minimise this damage.They decided to delay one round of treatment because of the stiffness, and have reduced the dosage down to 87%, because of the risk of permanent damage. What I want to know is if there is in fact anything I can do to minimise this damage.She tells me this is definitely the chemo attacking my nerves. Does anyone have any guidance on this? Thank you
btw - I have a breast cancer which has widely metastasised into my bones, liver, adrenal glands and hips. No pain or other problems
Hi Griselda and a welcome to the Online Community but so sorry to hear about your diagnoses and ongoing challenges.
A cancer journey is such a stressful time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer and journey.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive Breast cancer and Breast, secondary cancer support groups. These are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) Group Links I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Do get back to me if you need further help.
