Starting chemo Sept 05

Wow Susan, i am sorry you are feeling sick. Hope they figure it out quickly and cure it! It may have nothing to do with the treatments..."now" we never know if it is treatment related or not!

Hi everyone it has been awhile since I checked the sight. The weather has turned cold and my computer room isn't heated so I have to preheat with a plug in before using. Well I am going for Taxol #3 on Monday. I scheduled an hour of reiki massage for the following Monday so hopefully I will feel better sooner.
Had a horrible experience with an over reacting Family doctor this week. My White counts were at 54000 and he put me in the hospital on 3 strong antibiotics. They messed me up pretty good. I lost 5 pounds until my Oncs rescued me. I had my arms battered and bruised and 4 different cultures taken and found out there was NOTHING wrong with me. Angry is not a strong enough word. All they did was mess up my week recovery time. The saving factor was the nurses and other staff at the hospital were great but the oncology floor was full so I was in Urology and Respitory. They measured my pee but didn't know why. They did their best but they didn't know what to do with me. It was a nightmare. I would envolve other patients in my nightmare by walking the halls at 2AM with a white blanket around me and my skinny bald head. I wonder how many patients complained of ghosts. So here I am trying to recover but knowing my time is only 2 days to get my weight up. I know it won't happen.
Ok enough of whining. I was glad to see Peg is on #4. My #4 is the week of Christmas but I will be celebrating. After that it is up to God and me as I will be all finished with treatments.
Susan
I had radiation with Hodgkins. Both upper and lower. It is rough. The best food advice I can give you is use your blender with plenty of liquid. Where is it your skin is being burned? My skin burned on the back of my neck. The good news is that everything healed. I hope you find solutions to your pains.

Tina - special thoughts for a good path report.

I am already dreading Tuesday (yuk).

Sandra from the UK

Susan & Norine, so sorry to hear you're having such a rough time. I hope that this week finds you both feeling a little bit better. Tina, prayers for a good pathology report...Thinking of all my sisters & hoping that everyone can find some joy during this holiday season.

Norine – what a nightmare – I mean for you not the patients who saw you treading the boards – best wishes to both you and Susan whilst you are going through rough times. Tina – I have been thinking of you for most of today, although I get a bit mixed up with the time difference and never sure what time of the day/night it is for you.

Maxine – I move onto CMF tomorrow. I will have one lot tomorrow and one next Tuesday and then a 2 week break (one cycle) – this will happen 4 times, so I suppose I am looking at around 16 weeks before I try the delights of radiotherapy. You are right about finding it harder as the time goes on – Don’t know about you but depression is really setting in right now – time of the year maybe doesn’t help. I am so dreading tomorrow as my arm is painful and I have this ‘fluttery’ feeling in my chest – somehow think I will have trouble tomorrow when I speak to my Onc. Maxine thoughts and best wishes for you tomorrow – what are you on now? (wish it was a double vodka for you) and where are you at??

Another thing as the time goes on – you become ‘old news’ and the ‘condition’ somehow becomes accepted as the ‘norm’. If I get told I look well one more time I think I will scream.

Thoughts to you all – speak soon.

Sandra from the UK

Why am I having such a hard time finding this section in the main forum section? Has something changed? Usually who ever makes a current post shows up on the top but I don't see the September section where I just posted? Been so long maybe something has changed?

Cheryl

Hi everyone.
Quite a while ago I mentioned I was one of many women lobbying the government here in Australia for the inclusion of Herceptin on the PBS (Pharmaceutical Benefits Scheme)for women at all stages of breast cancer who are Her2 positive. This would effectively mean the government would subsidise the cost of the medication.

Yesterday, my petition was read in Federal Parliament.

Roche (the company who distribute the drug here in Australia) have just announced that they will provide 3 free doses to women once the drug is registered. This will be backdated to June 05. 3 free doses means 3 X 3 weekly doses - over $10 000 AUD
This is certainly a start in the up to $70 000 for one year (depending on weight!!!)

We aren't there yet, but it is a start! I am excited, and will continue my advocacy.

Tina, great news looks like they got it all. hopes for a speedy recovery

Aussiemum, You go girl!!
my little boy is a big huge Thomas the Tank Engine fan and one of Thomas's fav sayings is "Little Engines can do big things" Keep chuggin' away you will get there in the end

Best wishes to all
Nicole

Yes she said they got clean margins.

Tina

AussieMom,

You are too cool for words! Amazing what one determined [and bald] woman can do. Bravo!

*susan*

Maxine, I survived another round. Had the CMF today – took them 3 attempts to find a vein though which was a bit yuk. Come back Hickman line, all’s forgiven ;-). I feel OK at the moment but will be going to bed shortly (8.00 pm here).

Apparently it was the Epirubicin that was causing the pain in my arm and the fluttery heart. My husband and my Onc have decided I am depressed and made an appointment for me to talk the Breast Care Nurse (counselling). I tried to resist this and flatly refused any more pills – I will talk to her once and see how it goes. I think the problem is I keep telling everyone I am OK when sometimes I’m not (I have always been the strong one) and I hate the fact that life (work) is going on without me. My hubby has seen me a little tearful – I won’t take him with me next time!

My Oncologist came in when they were having trouble finding a vein and advised the nurses to always try my left arm first but not to rule out using the lymph node removal arm (right). The nurse went on to tell me that a number of patients are using this arm with no problem and one lady with lymphodema uses that arm and it has not made the condition worse – I am getting more and more ‘specialists’ telling me this.

Michelle – well done, go girl go! My results are in for her2 + or - (that is the question). Well guess what – My Onc said she has not seen results like mine in 5 years - they have come back on the borderline of + and - (as we know both are treated completely different) - so she has got to go back to the pathologists and try and determine whether it is more + than - so she can determine how to treat me after chemo and radiotherapy. Although Herceptin is not actually funded here yet (nearly though) my Onc led me to believe I would have it if it would be of benefit – watch this space!!

Well got a hospital appointment at the Warfrin (thrombosis business) on Thursday, another dose of CMF on Tuesday and then 2 weeks OFF – fits in great with Christmas. I then start the next cycle on 3 January.

Hope I am OK tomorrow?? – hope to see my grandson (4) in his nursery Christmas performance.

Anyone else got any exciting social activities planned?

Sandra from the UK

Sandra: My onc tells me that depression is normal. It is not a psychological depression as such, but brought on by the chemical imbalance in our brains. The chemicals affect our bodies so badly, they must also affect our brains. Sounds very reasonable to me. So any further medication which helps you get through positive and strong - bonus!

Sandra, have a great time at the nursery concert. Little ones are just so cute, that you just have to clap and cheer. Enjoy. Thanks for suggesting we share our celebrations:

SOCIAL ACTIVITIES / END OF YEAR CELEBRATIONS
* Daughter's (13) school speech night
* end of year Irish dancing concert
* church carols by candle light - son (17) playing trumpet in the band
* staff night out - dinner at a local winery
* final chemo FEC + neulasta + triptorelin (23rd Dec)
* comatose Christmas - but Christmas none the less
* farewell son as he goes to Germany for ONE WHOLE YEAR on an exchange student program.
* begin radiation

And each night, I'll stroll the local streets and look at the beautiful, festive light displays on the houses, and be thankful for the joy and beauty of life. Each day is a celebration.

Michelle

Peggy
HOORAY!!
Congratulations on finishing taxol. It seems a difficult stage for so many.
What for you now? Rest, recuperation and relaxation?
(or more prods, pokes and 'pothesising)

I confess I don't know what happens when treatments have finished? Are there tests to be done to say you are OK, or is it a "wait and see" scenario?