Not what I wanted to hear

Thanks Tonya,

Like I've said before, it is much more of a relief to hear from people who have and are actually going through it.  While doctors are great, a lot of them have never actually experienced it themselves and experience is everything. 

Sounds like you have had a rough trot with your chemo.  I guess everyone is so individual and how our bodies handle everything is also very unique.  I hope your decision is working out okay for you and that you are feeling better.

As for the baldies??!!!! I contacted a friend of mine who has multiple myeloma today, he has just gone through his second stem cell transplant, makes me look such a wimp, trust me he has been to hell and back numerous times.  He has suggested that he and I buy some polish and have a head polishing day.  He is so funny.

Take care and good luck with your treatment too.

Tracey ,what a hard year for you and now this dilemma.I was hesitant right up to the cannula going in.I was ready to do a runner!They had to give me a little something for the anxiety- told you I was a whimp.I had no evidence that the cancer had travelled but because it was a recurrence both my surgeon and my oncologist were insistant.I had to accept their advice in the end.I only did one round of TC and had to be hospitalised.After that my onc. said I could swap to another chemo(not as strong) or stop chemo and start Tamoxifen.He said that some chemo is better than none.So I was happy to stop and I feel I made a "middle of the road"decision.If I didn't have it then I'd be worried that a few cells might be floating around.If I'd had the 4 rounds then it may have knocked me off before the cancer did.If all your doctors think you should then you probably should.Take it bit at a time and know that you can have it adjusted or even stop it if your onc.is ok with it. I can't speak for your drugs but I guess you'll lose your hair and that's the pits.But all us baldies are here to support each other.

All the best for tomorrow.

             TonyaM

Hi All,

Have to make a decision tomorrow about the chemo.  Abraxane and Herceptin.  Is there any difference between having it tri-weekly or every week?  Is the tiredness any different between the two?  Is there still hair loss on the weekly treatment?  Just wondering which way to go at the moment.  Would love to hear from both sides if possible.

Thanks

Tracey xx

Hi All,

Have to make a decision tomorrow about the chemo.  Abraxane and Herceptin.  Is there any difference between having it tri-weekly or every week?  Is the tiredness any different between the two?  Is there still hair loss on the weekly treatment?  Just wondering which way to go at the moment.  Would love to hear from both sides if possible.

Thanks

Tracey xx

Thank you Kathy and Tonya,

I thought I had all my emotions sorted out, but I had to tell my Dad yesterday and that was really hard.  My mum is in a home with really severe alzheimers and she went in in April, so emotions in my family were alreay pretty well charged.  So I have been a bit up and down for the last couple of days, wondering if I should go ahead with the chemo or just try a new tablet.  I keep on thinking what if they have made a mistake and it is just a couple of swollen glands, but the tumour marker seems to tell more of a story.  I know I will probably have the chemo and should have it, but in the back of my mind I am still hesitant about it all.  I feel so well!

Not really worried about the heart monitoring as it sounds like a bone scan and I have had my fair share of them due to the secondary in my sacrum. Thanks for the description Kathy it always helps to know about other options and to be a little bit prepared.

Tonya, I will be having Abraxane and Herceptin.  After the course of chemo, I will continue to have Herceptin but i am not sure if it will be via IV or a tablet.  Most of the people her who have responded have said that it is not as bad as they thought, so here's hoping.

I wish you all the best with your journeys ladies.  Thank you again for your advice, support and friendship.

Tracey xx

Hi Tracey

This is Kathy from the BCNA Policy Team. I have been reading your blog and can understand  your anxiety about chemotherapy. I am pleased you have had so much good advice and support from other women in the network. It is how we hoped this onlne network would work when we set it up.

I wanted to respond to your query about heart monitoring tests. There are two types of test you can have - an echocardiogram, which is an ultrasound of your heart, or a MUGA scan (multi gated acquisition scan). The MUGA involves an injection of a radioactive substance into your bloodstream and then you lie under a special camera and images are taken of your heart. Some women prefer the echocardiogram because it doesn't involve an injection. When you are talking to your medical oncogolist about Herceptin and heart monitoring tests, you might like to ask about both options and let him or her know if you have a preference for one over the other.

Feel free to email me if you have any queries.

All the best, Kathy

Hi Tracy

I've been through the whole chemo and herceptin journey this year _ only two herceptins to go. One of my best decisions was to get the port in my arm. It was done under a local at the the Epworth. It just takes all the worry out of trying to find a vein every time. The heart checks are really easy to have and not painful at all. They just take an ultrasound of your heart every 3 months. Herceptin doesn't have the side effects of some of the other drugs.

I ditched wearing my wig early on. Too many temperature variations in my head to make it comfortable. My daughter helped me shave my head and funnily enough neither of my children or their freinds were woriied about my bald head. My husband is a nude nut so we just became book ends and had a bit of  laugh about it.

I'm sure you will make the right decision for yourself and i can sympathise when people tell you how well you look because they will never understand how you are feeling on the inside.

You clearly have a lot of people who care about you and they along with all the friends you have made through this blog will be supporting you through this next part of your journey.

Kind regards

Kay

Good luck Tracey.  It sounds like you've got it under control.  I'm sure your girls will be fine....they might be a bit upset about you losing your hair but if they realise that it's a small price to pay for a healthy mum, then I'm sure they will be ok!  My eldest son was embarrassed that I might not wear my wigs around his friends (walk around bald) which of course I would never do!  But when I told him that I would wear my wig and he saw me in it, he was fine.

This website is great isn't it?!  I know I've felt a lot better about what I am going through by being able to talk to people about it on here...

I'm sure you will cope really well with the chemo but keep us posted and if you need a chat, you know that we are all here for you

Louise x

Good luck Tracey.  It sounds like you've got it under control.  I'm sure your girls will be fine....they might be a bit upset about you losing your hair but if they realise that it's a small price to pay for a healthy mum, then I'm sure they will be ok!  My eldest son was embarrassed that I might not wear my wigs around his friends (walk around bald) which of course I would never do!  But when I told him that I would wear my wig and he saw me in it, he was fine.

This website is great isn't it?!  I know I've felt a lot better about what I am going through by being able to talk to people about it on here...

I'm sure you will cope really well with the chemo but keep us posted and if you need a chat, you know that we are all here for you

Louise x

Hi Tanya,

Yes I know all about the sell.  I have been thinking about it the past few days and with the suggestions etc that I have received, I'm pretty sure they will be okay.  I think one of the most difficult things is that I am not sick, I don't look sick, so I think all kids no matter what there age think "How can she be sick?"  Being a Mum, it seems to be just another thing we have to slot into our already busy day  We jsut seem to do it.  Once you get the shock out of your own systems and then put everything into perspective, you tend to handle things better.  I know I will be a mess on the day and I am probably going to come out of there andwonder why I was so worried.  Just the unknown I guess.

Congratulations on being part of the working party for this site.  Job well done.  Glad to hear how many people it is benefiting.

Thanks Tanya.

Tracey