Another member for the group

Hi Keli, We've had similar journeys. Thanks for posting your story, gives me courage! X Lu

Hi Keli, We've had similar journeys. Thanks for posting your story, gives me courage! X Lu

Hi Keli

I'm in Eight Mile Plains.  I have been lucky and haven't had to wait very long for my appointments.  I understand this is unusual though.  And my chemo days have been such a drama that being near Mater Private has been so much easier.

I did visit Chermside for my look good feel better session.   It was easy to get to so I will keep it in mind if my next 13 sessions drag out.

The diet is essentially removing dairy as studies are showing links between dairy hormones and breast cancer growth.  I have just been doing stirfrys and some of the curries.  I dont eat much dairy anyway so it hasnt been an issue to cut it out.  Although as per my physios recommendations I do have a sustagen at night.

I am hoping that  the news for you is terrific on Friday.  A lovely way to launch into the long weekend.

Talk to you later

Toni

Hi Tony,

Thank you so much for your reply :-) Yes, I can see you are all extremely strong women. I live in Melbourne.

I like your 'pyama' friends, yes, I have those too. And I have had a lot of people bringing me freezer meals already which is great. Since yesterday (day 6 after chemo) I have felt better and less fatiqued. Hopefully for the next two weeks I will be feeling a bit better.

I will try your green tea recipe. I normally eat healthy but at the moment all I want is nutella sandwhiches (on white bread :-)

I am trying to keep at least 1 dance lesson pe chemo cycle which always lifts my spirits.

Thanks again Tony, take care Nat

Hi Keli, I am sorry to hear that you are back on the merry go round.

Paul, as in Paul Mainwaring?  I am attending the Mater HOCA.  If you need a chemo buddy, I am around

I have been reading a really interesting book that has researched the link between dairy and breast cancer.  The author (a geology professor) had a radical mastectomy, 3 further operations, 35 radiations, multiple chemo session and irradiation of her ovaries.  When her 6th secondary appeared she took matters into her own hands and researched diet vs cancer resulting in a diet and lifestyle change.  That was 19 years ago and her cancer is in remission, if not disappeared.  It sounds promising.

Anyway, perhaps I will see you on our journeys.

Take care

Toni

 

Not the best way to make friends, but welcome to the group of extremely strong women.  Although some days you dont feel that strong :). 

Where are you?  If you put it up on your blog, fellow pink chicks can find and support you.

My first round of chemo was not so good.  But alot of that was put down to my intolerance of the steroids. Since then the worst days have been 4,5 and 6. Fatigue being the big thing after the insomnia from the steroids.

I have pajama friends.  People who can come into my home when I am in pj's and I dont care.  These people just check on me, do the little things that I just cant do on the day.  Some days it might be washing or vacuuming, other days it might just be the washing up.   Other days it might just be picking up a few things at the shop, or a book, and dropping it off to me.

I went out and bought some little pyrex dishes that can go in the freezer.  These allow me to freeze small meals that will get me through the nausea days.  Also when you are weary it lets you feel in control of helping the family meals.

I have found green tea with a slice of ginger, weak apple cider vinegar and honey and arrowroot biscuits work a treat.  Make some before you sleep and have it before you get out of bed.   As does eating every two hours. 

I have a diary on the table so I can keep track of what I have eaten.  In the beginning of the week I poach some chicken and eat it wil little bits of vegetable or fruit.  I dont use salt - learnt that when I got a wee ulcer on my tongue (round 2) and now avoid salty cracker etc.  Having said that in the first round I found fish, flavoured rice crackers and vegemite manna from heaven.  Not at the same time though :)

I also record when I take my meds.  Some days I get a bit "cloudy" and forget.  And any side effects or questions that pop into my head so I can ask next chemo visit.

Having said all this you may sail through chemo.  Many women I now know have minimal side effect.  If you find it is difficult talk to your doctor and nurse.  Let them know so they can help you. 

I also make sure I start my day with fruit and lemon in water.  Just makes me feel healthy.  I then walk outside and do my post surgery stretching in the morning sun/rain/wind.  Again it helps me feel health.  And I have now started ending my day with sustagen (as per recommendation of physio) .  A warm drink before bed with protein in it to help the body balance.  My physio also recommended games on the WII or computer to keep the brain and body active.  I bowl and play tennis (still badly).

Anyway, hope this all helps you.  You will work out what makes you feel good and what is just too much. 

Be gentle on yourself.  You are not alone.  Take care

Toni

 

Hi Tammy

I am yet to read one entry where we are on the same treatment.  There are so many drugs out there that I think many of them do the same job and are just called different "trade" names.  My treatment is aggressive and  "intense" because of the size and speed of the lump.  I had  my doctor do a breast check 2 months prior and there was nothing. So I went form 0 to 30mm in 8 weeks.  Although my nodes were clear, the structure of the tumour indicates there may be "radicals" getting around in my blood, another reason for the intensity.

Because of my sensitivity to steroids (unknown prior to treatment) I couldnt feel anything from the inside out and it was scary.  It also meant I couldnt leave the house, drive, type etc which was frustrating.  An imposed quarantine which is probably not a bad thing.  I went from well to invalid in a couple of days - that was confronting.

I couldnt return to work because of the numbness, so I have negotiated sick leave without pay until my treatment levels out. I work for the government and my contract is up at the end of June. It seems that there may not be a workplace after that anyway (new QLD govt directives) so I may get my wish of not working during treatment.

I found I was able to keep the nausea down with arrowroot biscuits, weak green tea with a slice of ginger, weak apple cider vinegar with a drop of honey and small meals every 2 hours.  So I didnt need the maxalon that was sent home.  I have it in reserve though.

My hair started shedding instantly.  It has thinned but it still hanging in there :) .  I am booked into a look good feel better class in 10 days time.  Hoping that will help the transition.  And I have ordered some merino skull caps from "ice breaker". My husband has one for winter which is really soft.  They have no seams and are washable in the machine so I am going to try them. 

I also found my skin got really dry really fast so I have switched to a goats milk soap (as suggested by my breastcare nurse) and I have some moisturiser coming from a company called moogoo which is supposed to be for chemo patients. 

My post chemo regime included a self injection (Neulasta) on day 2 to help with my immune system.  It seems to have worked.  My bloods on day 5 were ok.

With regard to gene testing etc, my oncologist spoke to me about a series of tests to be done after my first 4 sessions of chemo.  I think because they are big ones he wants me to concentrate on staying well during these and then we will look at the testing etc.    As there is not much known about TNBC I volunteered to participate in whatever tests they would like if it assists the research.  I also volunteered to sign over my tumour pathology if it helps. 

As you say, not a great place to be, but it is doable.  I am reading as much as I can and am changing my diet to a more "cancer fighting" diet.   I take heart when I read of people who are 4 and 8 years out from chemo and doing well.  It means there is light at the end of the chemo tunnel :) Just need to remember that when I am padding around the house unable to sleep.

Be gentle on yourself over the next few months.

Take care

Toni

 

 

Hi Serenity11

I was diagnosed with tnbc on 30/1 and had a primary tumour of 23mm tumour and secondary (ductal) of 130mm, Grade 3 cancer. I'm 39, no history of breast cancer either.

I started chemo just over 2 weeks ago and am on a completely different cycle to you which is interesting.  I'm on FEC 3 x 3 weekly and then taxotere 3 x 3 weekly, then radiotherapy as well.

The side effects so far have been nausea, a rash (due to anti-nausea drug), throat ulcers, tiredness and as of yesterday, hair falling out.  I get a port in next Monday which I'm not looking forward to.

I went back to work the day after my first chemo and have coped okay, but am now suffering low blood counts and so am in quarantine working from home - thank goodness for the internet!

Are you having or have you had gene testing as well?  I'm still waiting on my referral for that one.

Good luck with it all.  It's not a nice place to be, but one we have no control over and can only make the best of a bad situation.

All the best, Tammy x

Hi Serenity11

I was diagnosed with tnbc on 30/1 and had a primary tumour of 23mm tumour and secondary (ductal) of 130mm, Grade 3 cancer. I'm 39, no history of breast cancer either.

I started chemo just over 2 weeks ago and am on a completely different cycle to you which is interesting.  I'm on FEC 3 x 3 weekly and then taxotere 3 x 3 weekly, then radiotherapy as well.

The side effects so far have been nausea, a rash (due to anti-nausea drug), throat ulcers, tiredness and as of yesterday, hair falling out.  I get a port in next Monday which I'm not looking forward to.

I went back to work the day after my first chemo and have coped okay, but am now suffering low blood counts and so am in quarantine working from home - thank goodness for the internet!

Are you having or have you had gene testing as well?  I'm still waiting on my referral for that one.

Good luck with it all.  It's not a nice place to be, but one we have no control over and can only make the best of a bad situation.

All the best, Tammy x