Herceptin at home?

Hi

How Many herceptin injections have you had ? 
love Ruby Rose  

Hello. I’ve had 9 I think, maybe 10...

Hi, my consultant called me just prior to my 11th Herceptin of 17. She said I could stop now as I've had 9 doses. Recent research...which I knew was ongoing...has looked at whether 6 or 12 months is the best treatment plan and there is very little difference in the survival rate outcomes at 5 years...something like 0.2%, but you'd need to clarify that. She also said that her newly diagnosed patients were being offered 9 doses from now on as part of their treatment plan. I went ahead and had the 11th dose as I was 'psyched up' for it but that's my treatment finished now, and it feels weird when it wasn't supposed to finish until July... plus my follow up appointments have been cancelled so I feel a wee bit 'abandoned'. I think you get into such a busy routine of appointments...chemo, surgery, radiotherapy, ongoing Herceptin...that now shielding for 12 weeks is a shock to the system.

my unit offers Herceptin injections at home. I have herceptin/perjeta infusions every 3 weeks. With impeccable timing - looking back now - in February, I was offered the chance to have the infusions at home. It seems like a crazy idea that a nurse comes to my house and brings the machine and all the equipment and stuff to access my port. She is with me for about 2 hours just looking after me when on the unit, she could maybe look after 2 or 3 patients at the same time. However, the justification is that this gives the unit more capacity for looking after chemo patients, who potentially need more attention and also, this bit seems completely bonkers but apparently, if I have the drugs at home it is cheaper for the hospital because they don't have to pay the VAT on them and what they save in VAT more than covers the cost of the nurse out in the community providing the service. I was a bit unsure at first but agreed to try it and now I'm glad that I don't have to go into the unit during these uncertain times.

I was also told about the evidence of little difference in having herceptin for 6 or 12 months, but they usually still do the full 12 months if you tolerate it well. I'm on no9 next week. I don't have any issues after each treatment so I do want to have the full 18. Nothing has been mentioned as yet about stopping early, so I hope that isn't necessary.

Thank you so much for your reply. That’s exactly what has happened to me, although I wasn’t due to stop until September. Again follow up seems to have been stopped too, so I’m also feeling a bit lost and like I’ve been discharged without really expecting it.

i am still told I could carry on if I really want to but that my consultant is comfortable for me to stop, which has made me feel like if I carry on I’m ignoring her advice.

and I asked about getting it at home and was told that it isn’t an option from my hospital, as it would have solved the problem.

anyway, I’m so glad to hear I’m not alone in feeling this way. I really appreciate you responding.

Thank you. I appreciate you getting back to me. I wish I could have mine at home but am told it’s not possible from my hospital so have to decide whether to go to a covid 19 hospital for treatment or stop now.

i hope you can complete yours as planned.

best of luck.

Hi I had no 5 Herceptin injection on the 30th bloods done two days prior . Yes it is worrying visiting a hospital but it was a very different hospital than it had been before . Main out patients had one member of staff behind screen no patients waiting for clinics . Bloods had been moved to single room one staff member with mask  , I kept face turned away from her Nobody waiting . I put gloves on when I arrived which I put in bin on leaving . I then wiped car handle and gelled . Hubby stayed in car . Went home  washed clothes and showered .

All very OTT but I felt I'd took all precautions I could . Much the same applied for treatment which is at the rear of our hospital biggest difference in that unit was signs saying NO at hand gel machines . Wash hand with soap and water this sign was at entrance door then again in unit . Only thing I wasn't happy with was seeing no sign of chair being sprayed/wiped before or after use 

My thoughts are I know I have HER2 positive and Herceptin will hopefully control that . Covid is a risk that I hope to avoid getting . Hubby can go for walk once a day with dog so risk  at home as well .

My Onco made no discussion about yes or no just usual conversation but on phone . I have also seen the research that mentions after 9/10 it could be stopped 

margaret x

I should also have said my consultant said that she was confident  I could stop because I had such a good response to chemo etc. and didn't have any lymph node involvement or spread (touch wood!)...I could have carried on with Herceptin if this wasn't the case.

Hi

Sorry not to have come back to you sooner but I think everyone else will have out your mind at ease . 
I only got 6 , because I have a minor heart problem that in normal life wouldn’t bother me . I begged truly begged my oncologist to give me 9 , as others have said is probably the dosage of the future . But she wouldn’t give me more than 6 . 
took me a while to accept it but I have . Herceptin is a wonderful drug but like all medication it can have side effects .

I know how you feel and we want everything that can help us but I’m sure your oncologist hasn’t taken this decision lightly , with this virus on the go . Even a nurse coming to your home could prove a risk for you . 

take care and stay safe

love

Ruby Rose  

Thank you.

I don’t think you were OTT at the hospital, and thank you for your kind words. It’s always good to know I’m not alone.

wishing you all the best for the rest of your treatment, however long that may be for.