our first chemo

Hi

I'm having herceptin injections 3 weekly, just had my 4th one on Tuesday, no real problems to speak of, they keep you in for around an hour after the first one just to ensure there's no reaction.  Sometimes it stings a little whilst it's injected, they take it slowly anything from 2 to 4 mins using alternate thighs but no vein involvement.  After chemo it's really no problem.

Just had my 3 month ECG checkup and apparently my heart is doing fine, they'll keep monitoring your wife, every 3 months to ensure that there is no complications.

Northerner funny you should mention losing toenails, I still have mine but noticed that a couple of them are bleeding and seem quite loose, I thought it odd but glad to hear I'm not imagining things.

XOXO

Hi justtheone,

thank you for the info, much appreciated.

had the initial ECG ultrasound yesterday, then, as you say 3 monthly checks.

first Herceptin on Monday.

my wifes just about recovered from the last chemo, ie taste is just coming back, eyes are watering less each day, nose is still a bit sore and the general aches and pains are subsiding albeit slowly.      hopefully, the worst of it is out the way.

this is probably not the section to ask this but here goes, how does the hospital know that my wife is clear, what do they do to check, do they scan or mammogram again, just something thats been bugging me, the oncologist told us, a while back that she is now clear of cancer and all the chemo then Herceptin is to try to make sure it doesn't come back but what do they do to check or test and when.

Hi

Happy to reassure you that it not your imagination mine started to become loose during 5/6 cycles but couldn't go for podiatrist treatment whilst on chemo . So held them down with steristrips ....complex medical training enabled this decision  

It did surprise me as there was no warning signs i.e. Ridges or discolouration. At the same time rest of nails went very brittle and skin peeled off fingertips .( sounds like a good script for horror movie ) 

I just blamed very cumulative SEs on EC 

If yours are becoming loose I would ask your GP for referral on NHS as I would have found it difficult to choose someone private ...this can be done when it's linked to chemo . I had an appointment within a week . 

My second Herceptin next Wednesday same as you felt ok with first .

Margaret x

Hi

Just dropping in after answering . My BCN rang me last week to check I was ok after chemo finish and Herceptin start . I asked her the question about how they check for cancer .

She explained that mammogram would be done on remaining boob but for the masectomy site it really was a visual check and for me to look for any differences in scar area . Really any changes whatsoever . She also was very reassuring that if I felt there was an issue I should ring her for chat or appointments. She also stressed how important it was when under Onco to remember BCN still available and that Onco team may miss annual mammogram date . So I was advised to ring BCN at beginning of anniversary month .

hope this helps 

Margaret x

thank you Margaret x,

i will check with the BCN on monday, we have a " moving forward clinic" appointment for may and a  onco appointment for june, not had mention of a mammogram so i'll check on that monday.

thank you again x

had the 2nd herceptin on monday just gone.

a week after the first herceptin my wife started to experience quite bad ache type pain.

this was all over, feet, knees, back, shoulders, ribs etc.

contacted bcn after mentioning it at the time of the injection, bcn advised contact her gp as its not a % symptom and could be addisons related.

i spoke to the gp who scripted 2 x 150mg slow release tramadol daily, the addisons does cause aches and pains and she has an ongoing script for slow release 50mg tramadol which she rarely takes, so the pain thing is not something thats never happened but this is far more extreme and constant.

he has contacted the onco and the endocrinologist, we are to phone him around wednesday.

can anyone shed any light on this. 

Hiya

Thought I'd share my experience with the proviso that we are all different but I'm on my 5th herceptin now and I've found that midway through each cycle I have a few days when I have a very achy body, especially hips, thighs and legs in general.  There's some days when I feel my legs will buckle.  I mentioned it on my first review recently ( I get them every 4th/5th injection) and the lady doctor I saw hadn't heard of it being a side effect but she went to my actual consultant and he said immediately that it was the herceptin that was causing it. I'm 57 but when I'm all achy I walk and feel like a 90 year old.

Hope that helps and would be good to hear of others taking this drug who've similar experiences.

XOXO

thank you, justtheone.

its just worrying as she handled the fec really well.

it would just be nice to know why its happening, hopefully, get some answers next week.

it could be a combo of the addisons and Herceptin, addisons with the steroid use it does over time cause bad joints so vitamin D injection can apparently help, low sodium and so on, its just needing a bit of help from the hospital.

my wife finished her FEC chemo on the 6th of jan, 3 weeks later she started her one year of Herceptin.

she also has Addisons decease and uses steroids on a prescribed daily basis.

is she likely to be on the government's new vulnerable list, im guessing she is but as the FEC chemo has finished im far from certain.

she was asked not to return to work after her shift on Friday as they were concerned for her welfare.

I'm telling her shes has to completely isolate as well as myself and our 18 year old daughter who has been sent home from university.

im hoping this is confirmed via the nhs tomorrow.

Good question and one I've been wondering for a while.

There's a new thread here:

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/breast-cancer-forum/197981/new-guidelines-on-the-extremely-vulnerable-inc-active-chemo

which seems to suggest that we are indeed in the extremely vulnerable category for this reason

"people having immunotherapy or other continuing antibody treatments for cancer"

and possible the next reason on that list as Herceptin is an antibody treatment..

Myself and my partner have decided, until told otherwise, that this guidance applies to us so will start shielding today.

Sending virtual hugs and hoping we can all stay safe

XOXO