Cold skin

Hi Sandra, 

Sorry I can’t help with the Herceptin question. However, I’m sure once your MRI results are back, your team will only do what is best for you.

Regarding face, arms etc. I got cold face and feet, sometimes hands too, it could be a circulation thing. I’d mention it next time you see Oncol or your own Dr, whichever you see first. 

Hopefully someone will be able to answer your question about the Herceptin.

Wishing you all the best, 

Tina x

Hi Tina

Thanks for that. I am now seeing my oncologist tomorrow so I will mention the cold skin to him then.

Best wishes to you

Sandra

Hi there ,

I had Herceptin for more than a year and my heart was monitored every 3 months, I finished at the beginning of the month and I will have another ultrasound in September. I think if your heart is compromised in any way they take you off for your own good as has happened. I remember Leolady56 having to come off Herceptin, maybe she can give you some advice? 

I hope the MRI comes out clear and that you can re-start Herceptin. My feet and legs get cold (even though it's almost 40 degrees here but in my case it started when I was having Paclitaxel) and I didn't have low heart rate so the cold skin sounds like bad circulation that could be Herceptin or heart or Chemotherapy related so yes that's really something you need to talk to your team about.

All the best with everything and please let us know how you get on. xxx

Hi Leolady56

Thank you for your advice.

I saw my oncologist this morning and said my MRI scan was a little low but within the normal limits so he wants me to go back onto the Herceptin. He said they have done a new trial by being on it for only 6 months now so that is what he recommends for me. I will have another MRI scan a week after having my Herceptin  which should start 8th July, so at least they will be monitoring me well.

I also asked him about my cold skin and he just put it down to the chemo. It is hot here today and I still have a cold face, arms and legs. I am away next week in Valencia so lets hope I get rid of my coldness!!

All the best to you too and thank you for taking the time to reply.

I hope you have found something happy to do  and have a lovely weekend xx

Hi I am Leolady56

I had to come off Herceptin as I developed paricarditis it affects the heart lining. I had 9 of the 18 doses, and the onco was more then happy to stop Herceptin as was I.

There is a trial at present both in the UK and USA as to how many doses of Herceptin do we actually need. There is a thought that 6 or 9 is enough, that the side effects can get worse and actually the dose of 18 is too much.

So there is my story and tbh I've not looked back or worried about it. I am one year clear and back to the things I enjoy and more.

Hope my little experience helps you sandra

Leolady56 sending sustaining hugs to you all

Hi Leolady56

Thank you for your information and kind words.

I saw the oncologist on Friday and he is going to put me back on herceptin for the shorter trial as you mentioned.

My MRI scan results were lower than at the beginning but within the region of him being happy to continue with the herceptin. He will also arrange for me to have another MRI scan a week after having my next herceptin, so at least I will be carefully monitored.

I am slightly worried going back on it but willing to give it a try as they are keeping a close eye on me.

I'm pleased everything worked out for you and you have had the all clear and back to enjoying life.

I am off to Valencia for 5 nights and really looking forward to it. As you say we need to live life to the full and enjoy it.

Will be coming back to more hospital appointments and the Herceptin.

All the very best wishes to you.

Sandra

Have a wonderful break......it will do you good....but don't forget it's very, very hot in Southern Europe at the moment. My skin is burning after a few minutes if I haven't covered it with sun cream. It never used to burn so fast.  Also I dehydrate more quickly since I had the cancer treatments. But I'm sure you'll go prepared and the warmth certainly helps the aches and pains!

Best of luck for future treatments once you are home again.

Love Karen