Chemo thoughts please

Hi Lizzy

I wish you a speedy recovery from what you are going through and hope when you come home from hospital you will be feeling so much better than when you went in.

I am awaiting the outcome of my second surgery where I had a total axillary clearance at my post op appt on 31/1/12.  I have already been told I will have 6 months of chemo and then radiotherapy to follow.  I am also scared but i feel if we want to beat this thing then we have to continue on this journey that the experts recommend.  I do agree though that you have every right to ask questions and be fully aware of what is the best things to help alleviate any symptoms you are having.

I wish you luck and hope to stay in contact and hope I can help you on your journey along with all these other lovely ladies who have been through it or going or about to go through it.

xx

Hi Lizzy,

Sorry to hear that you had such a rough time the first go.  I have now finished my 6 chemos and 5 weeks of radio just a few weeks ago.  Prior to that I had 2 ops then a mastectomy and am now on tamoxifen.

I would really recommend that you follow your doctor's advice as they are the experts knowing what will be best for your long term health.

I can now look back and am glad that I suffered through the problems and continued it.  The time went quickly and I am now starting to feel good again and hopefully get back to a normal life.

Good Luck with your treatment.  Julia

Hi Lizzy,

Sorry to hear that you had such a rough time the first go.  I have now finished my 6 chemos and 5 weeks of radio just a few weeks ago.  Prior to that I had 2 ops then a mastectomy and am now on tamoxifen.

I would really recommend that you follow your doctor's advice as they are the experts knowing what will be best for your long term health.

I can now look back and am glad that I suffered through the problems and continued it.  The time went quickly and I am now starting to feel good again and hopefully get back to a normal life.

Good Luck with your treatment.  Julia

I meant to say I could NOT cope with shopping malls!  I found the noise and brightness overwhelming. My social stamina disappeared.   But I did enjoy smaller quieter shopping areas.  I eventually got my mojo back, but it took months.   I am having trouble editting my comments.......

Hang in there.... take it slowly....... be pateint. Enjoy the good days and plan to do little  or almost nothing on the yukky  days.....and that's something coming from me!!!!! I have learnt alot in 18 months!!!!!!  So has my family!!!!   Cheers, Fiona

I can remember the Dex! Aweful!After a few cycles, my doc ( also from Newcastle Mater) took me off dex as my body was otherwise coping. Sleeplessness is aweful. as soon as I cam off dex I coped so much better. having chemo is otherwise not so difficult. It is usually a good dday. I like to chat with other paateinds and staff.  You get to see the same faces each time you go. Things that help me cope better were driking lots of fluid... but I got sick of water... weak ginger cordial ( Buderim)much more soothing. I also found green  or peppermint tea much more tolerable than coffee. My har started falling out aftenr the second A/c tretment... eyebrows, lashes... etc The look Good Feel Good programme was excellent. They teach you how to put onmake up and ties scrves. You Tube also had heps of scarf tying ideas. It was heaps of fun learing new ways to feel good about yourself.  Alos I became a fan of nail polish. Lots of layers help to same my nails.  I foud it was well worth the investment in OPI. Some ladies swear by D Lewin nail hardener.Keep an eye on the veins in your arm. If they get eally sore, they migth be getting blocked. I ended up getting a port. This proved heaps easier for the staff as my veins are small. Also I now have ongoing Herceptin every 3 weeks... for 12 months... so it was well worth  the investment. If your veins are big and strong, you might cope better.  Chemo is poisonous to so many parts of you body where you least expect.We all get a different array of side effects. Social fatigue is also common too. I found I ould cope nearly as well with shopping malls. They can be overwhelming.  It is worth sticking in ther with trament. You have to beat this disease. You will be amazed how stong you will become as a result of perservence. I finished my chemo in March lasst year...and it wasn't til July till I started to feel stong agoind... just pace yourself.

You will find the staff at the Mater excellent. We are truly lucky to have a cenre of excellence on our  doorstep in Newy.

Hi Lizzy sorry to hear about your bad experience with chemo, I wish you did not have to go thru it , youe are strong and you can do it , I was in the same boat few months ago. I just finished on the 1 of november last year the same type of chemo and I survive all four cycles you can do it , trust me . I took the dexamethasone tablets no later then 2 pm and I did not have any problems with them , I use to take them at 8 am and 2 pm , try it might work for you . As I said I am 38 years old and just finished all my treatment , radiation and I am now on tamoxifen for the next 5 years and i start getting back to a new normal slowly. It might seem with no end now but believe me there is light at the end of this tunnel. Do not do anything rush before you talk to your doctors and nurses they can help you.All the best and good luck , regards Monica

Hi Chris

Thankyou for your reply. Yes I was on Dexamethazone 2 tablets night before chemo followed 2 tablets morning and night for 5 doses after. I am only young 35 now and I agree I have my whole life ahead of me. In all my life I have felt the way I did for 3 days like that. Honestly it scared me like you wouldnt believe - and yes I am frightend to experience it again. It seemed just no quality of life at the time and whilest going through this I read too many stories of women who stopped there treatment because of experiences similar to mine and then theres the storys of people who reflect to the later on in life again no quality of life. I dont want to get 5 years down the track and ask myself why didnt I continue or why did I continue.

My breast cancer is different to most. No one in any side of the family has had breast cancer and interesting it grew on the inside not the outside and even though I had my limpnode removed there was no sign of cancer cells in it. Which in a way  I am a lucky one. I didnt have the HER2 nor did I have the eostrogen or estrogen (not sure how you spell these) either. Dr Nordman said by not having HER2 was a good thing the concern is with not having the other 2. Thus why 4 - 6 treatments of chemo which is (Docetaxel and Cyclophosphamide) followed by radiation treatment which consists of approx 10mins every day for 5 days for 5 weeks.

I am still so very emotional just yesterday I was shopping and the fire alarm went off and we had to evacuate the centre which I went to my car and waited to hear the fireys sieren and I started to well up. I thought to myself OMG what are you doing liz. I was nearly in tears.

I am an outgoing person. I easliy make friends where ever I go, strike up a conversation with a stranger, I play sports (which I havernt done since being dianogised) I have 250cc motorbike and on my L's and just try and get out there and live life - but I seem to have stopped.

I have spoke with my mum and she says its my decision to make and she will back me 100% and the same with my husband. My sister is unaware of my decision yet as she will be on my case.

I am so confused about it all so I will so take your advise and speak with Dr Nordman and my breast cancer nurse and hopefully the best decision will be made for a happy and bright future.

Love + Hugs Lizzy xx

Ditto to what Chris has said above. Chemo or not to chemo may depend on a few factors  such as having cancer in your lymph nodes,what stage cancer, was it eostogen+ve?was it hercepton -ve? etc. You need to discuss it with your oncologist.I didn't finish my chemo course cos I had a bad experience and ended up in hospital with no white cells and an infection.But I discussed it first with my oncologist and he was ok with it so long as I took Tamoxifen. It's your body,your decision but you need to get all the facts and info before you decide.

                                      Tonya xx