Those of you who have followed my posts will know I am anti drugs and yes in my circumstances this makes life a little difficult as I need them to live. Yesterday in a jovial mood due to my recent test results I saw my doctor before the infusion. Somehow the conversation turned to me saying when I stop treatment and then came the bombshell comment. A comment I am still reeling from. I am sorry finish treatment - you will never finish treatment whilst it is working. This was a OMG moment for me and a comment that cost me my sleep all night last night. I am shocked to say the least and I feel numb. Have herceptin and perjeta infusions for the rest of my life. I must be on a tight life line or I am sure who pays for this exremely expensive drugs for a long time. So I feel numb really. How long now seems on my thoughts and also how dumb am I to believe my recent test results mean't I could one day be NDE but when I asked that she informed me no cure .I am so back to square one now... I feel like I did when first diagnosed .......

How often do you have to have the Herceptin and Perjeta infusions? Weekly for the rest of your life is a bit tough. My dad has a couple of injections for his bone cancer and one is 6 weeks and the other is 3 months. He can sort of forget about it for a little while then. We all have worry when touched by cancer. Even those of us as survivors still have the life long worry of will it come back or not. At least you are being closely monitored so no rampant cancer run unbeknownst to you.

I can relate to what you are saying, Sam09. I was diagnosed with mets in the spine in April last year. Initial diagnosis was September 2012 (left breast and lymph nodes). Initial biopsy concluded I was Her2 negative however, after mastectomy, pathology stated there was enough evidence to say I was Her2 positive. Had chemo, mastectomy and radiation and one year of three weekly Herceptin. Chose to have other breast removed six months later to increase my chances of the cancer not returning. When diagnosed last year with bone mets, my world changed forever. My oncologist told me right from the start that, now that the cancer had metastasized, I would never be 'cured'. The aim is to keep it stable and she said that she had a number of patients she has been seeing for years who had an initial diagnosis similar to me. So, since April last year I have had radiation, chemo (Taxol), three weekely Herceptin/Perjeta infusions, monthly Xgeva injections and daily Letrozole tablet. I have also been told that the Herceptin/ Perjeta will continue indefinitely. They are regarded as the latest 'you beaut' drugs for Her2 breast cancer and my oncologist said that, if the cancer returns, these drugs slow its growth significantly. Like you, I'm still getting my head around having to live with this. I see myself as someone who lives with a chronic illness that needs to be managed (similar to someone living with diabetes, for example). I do not want to be defined by the cancer yet I know some people think this. Also, things happen now and then which rock my boat. For example, yesterday I was looking at a cruise I would like to go on later in the year and then found that it will be very difficult for me to get any type of travel insurance because my cancer is metastatic. It's like I've entered another dimension in the world where there is no going back. The only thing I try to hang on to is that I am grateful that treatments seem to be discovered all the time so that, the longer I can remain stable, the more chance I have to live for a long time. Good luck with everything.

Sam - it is a constant roller coaster for you, I am teary writing this as I can feel the hurt, my heart goes out to you! I hope you don't spiral after your conversation with your doctor - yes you have every right to be cranky, peed off et cetera! @nelliejs she referred to them as the 'you beaut' drugs - that is a positive! It would seem you are getting the best possible treatment. Sam I am not in your predicament I know, but hopefully you can find a ray of sunshine within to help you get on with your everyday routine! Wishing you many years of comfort and enjoyment ahead and remember when it is getting to you think of your favourite song and start singing!Take care and sending you a virtual hug xx<3

Oh @Sam09 that is a horrible thought process for you to have been rolling around in your head all night. I hope you can gain some clarity and peace as you work thru this. HugsAlice

Yes i was listening...Iam awake i am not dreaming ..metastatic bc is forever ...even if a miracle NED occurrs we still have the disease Magic vibes to all may the day be fair to you and yours

Sorry what did you say Doctor- please say again!

14 Replies

Zoffiel
Member
9 years ago
@Sam09. It's a pity that we can't just give ourselves a good talking to and pull our act together. Sadly, it's not that simple.
Mental health is just like any other aspect of our wellbeing. World class sports people can break a leg. Noble prize winners have strokes and suffer Alzheimers. Any of us can go from exceptional functionality in any aspect of our lives to being completely lost because the skills we were used to, and sometimes took for granted, have deserted us. It's a rare person who has this happen who doesn't grieve for their past life.
Sometimes things get better, sometimes they don't. I wish that I could say that getting help will solve the problem, but you don't know until you try. It will either help, or add another item to the list of things that really gave you the irrits and cost money that would have been better spent on wine :)
SoldierCrab
Member
9 years ago
@Sam09 do you know that you are entitled to a mental health plan, which entitles you to see either a psychologist or psycharist under medicare.... I have and it has really helped me cope with my new me....

Hugs
Soldier crab xoxox
Sam09
Member
9 years ago
Thank you for your comment. What side effects do you have with these infusions 3 weekly like me. I might need to see someone to talk too. Because I just can't seem to get on with life with this diagnosis. Even though I feel quite healthy and well in myself. Mentally I can't cope at all. I'm always in tears and so fragile. I am not me anymore just someone looking down on a shell of the old me. Life is so different now and I know we are all in the same boat and I need to pull myself together and I tell myself that but it doesn't work. I'm wallowing in doom and I hate that. I have always been a positive happy person that frowned on people like that. And now that is me. I'm ashamed.
JennyEG
Member
9 years ago
I'm HER2+ and on the 3 weekly schedule of Herceptin and Pertuzamab (Perjeta). The only way I can accept it is to think that they are extending my life and are essential for me. So not a treatment as such but life giving. Otherwise I just get too angry.
Pamelamary
Member
9 years ago
Sam, it does get better - though the scanziety remains the same and life is perhaps more precious. I have very few side-effects and am lucky enough to be having the 3 weekly Herceptin at home.
Regards..... Pam
nelliejs
Member
9 years ago
Sam, I know it seems hard to add something else into your life but it seems like you could do with some help such as counselling. You're letting your mind get so far ahead, full of the 'what might happen' scenarios. Yes, we're all guilty of that but you need to try and keep yourself in the present. No-one knows what their future holds. The person next door who has never had a sick day in their life could get run over by a bus tomorrow. By thinking of all the horrible things that might happen, you are only making yourself sick. You have so much to deal with now. Yes, we're here for you on this site but I truly think it would help if you could reach out to someone in person who can help you navigate through this time in your life. Sending love and healing.
iserbrown
Member
9 years ago
Sam come on to wish you and your family well. It is not easy watching someone so dear be so unwell.
Take care xx
Sam09
Member
9 years ago
Thank you lovely ladies for your comments and advice I really appreciate it. I feel so grateful I have my cyber sisters to guide me through this nightmare and it is really a comfort more than anything or anyone else because I know you all have the same thoughts and fears in your head as I do in mine. Pam ..... how is the side effects 5 years on ... do you have these infusions every 3 weeks. I have always been a planner and a routine person I think what I find hard is the not knowing. Currently my wonderful father in law is dying of a brain tumor. Not only is the pain unbearable losing such a great much loved man but the demons get me in the middle of the night and I can't stop thinking will this be me soon. Its like a big black atomic bomb sitting above your head that won't go away and I wish it would. Sigh............. I am just so frightened of the unknown I can't breath properly anymore. I actually thought when my tumor markers dropped into normal range after my 4th infusion and my tumors halved in size and numbers that I could beat this but then when the doctor told me NO treatment will never stop it hit me like a brick. She told me mets mean cancer in other places.... I realised I was dreaming. I read tonight on a site that 50% of her 2 positive cancers go to the brain. That is a terrifying thought!!!!! 5 years on Pam.......... please tell me it gets better than this.!
Pamelamary
Member
9 years ago
Sam, I've been on Herceptin for nearly 5 years now - sure beats the alternative! I know it's hard. A metastatic diagnosis changes your life completely, but there is always the hope of living both long and well.
Best wishes..... Pam
brightspace
Member
9 years ago
Yes i was listening...Iam awake i am not dreaming ..metastatic bc is forever ...even if a miracle NED occurrs we still have the disease
Magic vibes to all may the day be fair to you and yours