Just when you think things are happening for you a hurdle jumps in the road. I was having TCH & on my sixth round I had a pretty severe reaction to the carboplatin. Due to this the next four rounds have been abandoned. I feel pretty deflated and ripped off. Now I continue with Herceptin only & wait and see. I struggle with the fact that I gain an acceptance to what I must endure and then the game changes. I have continued to try to be little miss positivity but at times it is hard to project. I laughing told myself after being diagnosed that its ok I will get a new set of smaller boobs from all of this ( I have always had more then my fair share) and now due to my diagnosis I don't even get that. I would like to be able to jump up & down and demand surgery rather then just sit there and say ok. I am a very determined person so I struggle when I am told that I do not have a choice about my treatment, as I told the oncology registrar that I would like to keep going, try another treatment it is too early to stop I am only four months down the road on this long journey.. I want to know why don't we have a choice they are our bodies after all and we endure the treatment I struggle when my family tell me look on the bright side you get a break from treatment. I don't want a break. I have minimal side effects lets keep going, get these liver mets under control. I don't want to hear your alive, your here. I want to hear lets win.... I am one strong determined person but I do struggle sometimes and whilst I have very supportive people in my life it is very hard to tell them exactly what my fears are.

I'm so sorry things aren't going along as you had expected Janine. It's not fair! I get what you mean about feeling deflated and ripped off. We are thrown so many unexpected curve balls along this journey. Once you are used to the idea of a certain treatment, the goal posted are changed. As much as I was happy and relieved not to have to go through the last cycle of taxatere because of quite bad neuropathy in my hands, I also became fearful and felt very vulnerable for a while and scared that this would affect the chance of recurrence somehow. After talking it through with my Oncologist until I understood the situation, I now feel better about not having the last treatment. I'm also now on herceptin but I'm taking Femara tablets daily as well. Let us know how you get on with the Herceptin and know that your pink sisters are here to listen anytime you want to vent. I'm sending you a hug right now. Love Janey xxx

Hi Janine I'm sorry to hear about your reaction. Have you had a scan to see how the treatment was helping your liver mets? It seems everyone treats differently. Would you consider a second opinion? I've only had one break in 2 1/2 years at my request - to go on holiday. My oncologist is very proactive. I think in your position I'd be feeling pretty similar. What has helped me is being super informed so that my oncologist and I make decisions together. As for surgery jump up and down, you are not having chemo at the moment - maybe you can have the operation. Try to be the one in charge - it really helps. A xxx

Hi there I had a scan in June and had really positive results, the tumor in my nodes had gone completely and all of the liver mets had shrunk by half. This is why I am disappointed in having a break. I would consider a second opinion but am not sure how to go about this as I am going through the public health system. I would love to be the one in charge as it feels as though I am at their mercy for now Thank you xxx

Hi Janey This site is great for venting and talking to others that are in similar situations because whilst people try to understand they really don't. I have been on Herceptin since the very beginning of my treatment and find it the easiest part of the treatment, except for the weight gain. I have done alot of reading about that recently and it appears to be quite common. Thank you for listening xxxx

Potholes on my journey | BCNA Online Network

11 Replies

MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
MandaMoo
Member
13 years ago
Hi Janine - even in the public system you are not a puppet. You may have been told you are incurable but you have a true chance for remission with a response like that. Where do you live? Reconstructive surgery in the public system will be much harder in your circumstances. I believe :-(. Many people still get positive results on herceptin alone also. Amanda xx
JanineB
Member
13 years ago
Hi Janey

This site is great for venting and talking to others that are in similar situations because whilst people try to understand they really don't.

I have been on Herceptin since the very beginning of my treatment and find it the easiest part of the treatment, except for the weight gain. I have done alot of reading about that recently and it appears to be quite common.

Thank you for listening

xxxx
JanineB
Member
13 years ago
Hi there

I had a scan in June and had really positive results, the tumor in my nodes had gone completely and all of the liver mets had shrunk by half. This is why I am disappointed in having a break.

I would consider a second opinion but am not sure how to go about this as I am going through the public health system. I would love to be the one in charge as it feels as though I am at their mercy for now

Thank you

xxx
MandaMoo
Member
13 years ago
Hi Janine I'm sorry to hear about your reaction. Have you had a scan to see how the treatment was helping your liver mets? It seems everyone treats differently. Would you consider a second opinion? I've only had one break in 2 1/2 years at my request - to go on holiday. My oncologist is very proactive. I think in your position I'd be feeling pretty similar. What has helped me is being super informed so that my oncologist and I make decisions together. As for surgery jump up and down, you are not having chemo at the moment - maybe you can have the operation. Try to be the one in charge - it really helps. A xxx
Janey235
Member
13 years ago
I'm so sorry things aren't going along as you had expected Janine. It's not fair! I get what you mean about feeling deflated and ripped off. We are thrown so many unexpected curve balls along this journey. Once you are used to the idea of a certain treatment, the goal posted are changed. As much as I was happy and relieved not to have to go through the last cycle of taxatere because of quite bad neuropathy in my hands, I also became fearful and felt very vulnerable for a while and scared that this would affect the chance of recurrence somehow. After talking it through with my Oncologist until I understood the situation, I now feel better about not having the last treatment. I'm also now on herceptin but I'm taking Femara tablets daily as well. Let us know how you get on with the Herceptin and know that your pink sisters are here to listen anytime you want to vent. I'm sending you a hug right now. Love Janey xxx