January Gemstones 2015 (January starters not on Facebook)

Evening Ladies!

Another dash home from work - to nothing.  Still, I have knitted yet another hat this evening.  I will have a huge choice when I am finished but it does keep me busy.  I have managed to find a couple of ladies locally who both have experience of breast cancer and are both hairdressers so I am visiting them next week to have a wee go of a wig to see what I think!  

I have decided not to give the cold cap a go.  I think I have enough going on to be getting on with and I have heard it is quite painful as it is soooo cold.

Judy, I too was offered a clinical trial, with Kadcyla, a drug currently used for advanced breast cancer and they want to see if it is could be useful in early breast cancer treatment.  

(Don’t know what I have done to my settings here but I no longer get alerts when posts are put on the thread!! Least of my problems!)

Lynny

xx

 

 

Hi all,
I am starting my first chemo session on Friday, with my pre assessment tomorrow. Diagnosed with grade 2 hormone+ IDC in October. Had WLE in November with sentinel node found to be positive. No plan to have rest of lymph nodes removed.
Apprehensive about SEs but glad to be getting started. I think I am having EC but going to check this tomorrow as little confused by all the various types mentioned on this thread. I have been hoping to continue to work when I can between treatments, oncologist and chemo nurse happy for me to try, but starting to think I may be being too ambitious!
Really good to read through everyone’s comments and pick up various tips. And lovely to see the community of support. Let’s see how it goes!

Hi ladies!

 

And welcome to the Lynny, Judi, Only1know and Pumpkin13 - so sorry you find yourselves here.

 

I havn’t been on the thread for ages!

 

I hope that those of you who have started their treatment are not suffering too badly and those of you that suffered with terrible sickness have turned a corner.

 

My SE’s seemed to be slow to start, but did catch me up.  The two I am finding most difficult are being in a constant state of shivering - anybody else?  I just shiver the whole time, sort of trembly.  The other is the painful mouth, I have been reading some of the different mouthwashes you have been using and will go armed with a list when I see Onc on 6th Feb.

 

My next treatment is on the 10th to bring me in to line with other FEC-T’ers.

 

Tell you something though, appetite not affected at all!  Can’t seem to stop eating, not a bad thing at all.

 

Strength and comfort to all of you.

 

Big hugs,

 

Su

 

XX

Hi Lisa,

 

My sentinel was positive but with actual tumour (over 2mm), my understanding is that if they only find isolated tumour cells in the sentinel then they prefer to not do the axillary clearance.  My complete clearance showed that a further two nodes also has significant tumour in them, so for me it was the right thing.

 

I am pleased for you that you did not have the clearance, especially as radiotherapy is proven to be just as effective as removal in isolated ccells, because it is a horrible op, mine was on 18th November, and it gives me a lot of trouble - chemo seems to have ‘woken it up’ too.

 

Good luck with everything going forward and stay positive.

 

Love Su

 

XX

Oh!

 

I nearly forgot, I discovered Mini Milks today - my freezer is stocked and they sooth my mouth a treat.

 

Su

 

XX

I have news about when I will be starting treatment.  I phoned the hospital today and my referral letter from the oncologist had got ‘stuck’ with the research department but they did call back and I am starting next Friday 30th Jan.  You are all very brave and all your posts are helpful for those of us who are still in the process of information gathering.  I am glad to now have a date and can focus on getting to the end of this bumpy trail, using all your helpful hints.  

 

I am feeling quite persuaded by all who have had positive experiences with cold cap and I am meeting with the nurse to talk about it before my treatment.  I do think it is an indication of mental state that I started off absolutely not having a wig and absolutely not having cold cap and now I am going to give them both a go.  Sometimes it is difficult trying to gather all the information and making a decision when your head is in such turmoil.

 

That said, I am hoping for the best with regard to SEs and preparing for the worst.  I will be stocking up on soft toothbrushes, mini-milks and all other comfort foods that may help!  I have got hats/scarves covered.  It helps me to think that I am somewhat in control, even if in my heart of hearts I know I am not.

 

Good luck to you all who are having chemo tomorrow. 

 

Lynny

x

 

Hi Lynny,

 

Good luck with the SE’s, I like you hoped for the best but prepared for the worst, but although not great, all been manageable so far.  Wishing the same for you.  I’m also glad you have got a plan now, it helped me a great deal, all the consant waiting was unbearable.  Wishing you success with the cold cap, I envy those of you with the resilience to do it.

 

Lisa, thanks for the supportive words, I hope it ‘goes back to sleep’ soon too, but BC nurse warned me that it won’t.  It’s fine, all means to an end for me.

 

Goodnight ladies.

 

Love Su

 

XX

 

 

Yesterday I had my fine needle aspiration for biopsy of the thyroid and it is the first time since diagnosis that I have cried. I am not a baby by any means but it was excruciatingly painful and made worse by the doctor saying “oh come on now” as if he was exasperated with me. Someone kept knocking on the rooms door during the treatment and the doctor kept mumbling to himself. He said he would tell me when to take my last swallow and then didn’t but just said urgently “don’t swallow” so I immediately felt like I needed to swallow. It was aborted eventually when he realised how distressed I had become, his parting shot was " I don’t think there’s anything to worry about" but no biopsy done. I ran out of the hospital, drove home crying and left a very distressing voicemail for my BC nurse which she returned and reassured me about. I have not slept last night as I am still playing it all over in my head. Sorry girls, has anyone else had one and if so what was your experience? My bravery in all of this is shot to pieces :frowning: Sarah x

Sarah,

 

Your experience sounds absolutely horrific.  You must have been so upset!  Big hugs winging their way over to you.  

 

I have no experience of the procedure you had, so can offer no comfort that way, but I can tell you that before I started chemo my onc told me there is a 3mm suspicious area on my lung, could be nothing, could be mets.  It really peeved me off at the time as a split second before she told me that, she told me my ‘scans were clear’.  The area of the lung os too small and remote to biopsy and I will be rescanned when chemo is over.  I have taken this information and chosen to consider myself to be having chemo as insurance to mop up stray cancer cells.  The fact that the rubbish doctor you saw said ‘I don’t think it’s anything to worry about’ should be what you hold on to - not the fact that he was rubbish with complete lack of empathy and communication skills.

 

Don’t let this experience make you lose your bravery or confidence, in fact use your bravery to give feedback to the doctor/team involved to help imporove somebody elses experience,

 

Love Su

 

XX

Hi Marli, Lisa and Su, Thankyou so much for your kindness and support, I really hope no one else ever has such a bad experience, I think it’s going to take a long time to forget. My breast biopsies were fine and did not trouble me, I think because it was the neck it was not the best area anyway, I have just seen a YouTube video of the whole procedure and the lady breezes through it, I watched with a sunken stomach! Never mind, today is another day and so we move onwards towards our end goals. The support and strength you get from this forum is invaluable and I wish you ladies all the best of health for the future. Bless you x Sarah

Thank you so much for all of your kind and positive comments ladies, this forum is my lifeline it really is. I feel so lucky that I have all of your support. I am feeling strong today, power walked my dog at 7am this morning and feel like I am back on my mission to conquer this again. Bless you all, I hope you,are all enjoying a lovely relaxing Sunday. love and strength :slight_smile: Sarah x

Hi

I was diagnosed in nov with breast cancer. On dec 3rd I had a lumpectomy and lymph nodes removed. On,y 2 out of 21 were positive for cancer.
I started my chemo fec-t on 15th jan and had a rough couple of days until they changed the anti sickness tablets and my next chemo on 5th Feb (my birthday) they have given me emend which I have heard is brilliant for sickness. I have to have 18 herceptin injections (one every three weeks) and radiotherapy daily for four weeks followed by tablets for 10 years. I have really picked up and dare I say it feel normal over the past few days. I’m hoping that this is the regime for the following chemo sessions. I’m also trying the cold cap!

Jenny x

Hello ladies I am new to this and this is my first post. I am having my picc line fitted this morning and haven’t slept all night dreading it. Tomorrow is going to be my first session of chemo not looking to the se. My op is going to be after chemo and depending how it’s worked I won’t know what surgery I will have. Not looking to the following months. As of tomorrow I can say 1 down 5 to go. X

Hi Jenny,

 

Sorry you were sick, there were another few on here who suffered badly, I got off lightly with nausea only.  Hope the new meds are better.

 

Hi Katy,

 

Ten days seems like a long time to me, but I only suffered for four days, what did your team say?

 

Waiting for scan results is horrible, but good luck with them, look forward to hearing a positive result for you.

 

Hi Bonkers, sorry you find yourself here, but hopefully you will find it a great sourcce of information and support. By the time you read this, you may already have your PICC line fitted.  I had an attempted fitting (not awful), but my veins were too narrow so I had a Groshong Line put in a few days later instead.   Good luck for tomorrow, it feels very daunting, but once you have done it, it’s over.  XX

 

Love Su

 

XX

Hi Sandra,

 

I’m sorry to hear that the chemo made you so sick :womansad:  the team are there to help you and I would take Sue’s advice and push for more effective meds.

 

Hope everybody is ok.

 

Crytalbella, you have been very quiet, I hope you are ok.

 

Big hugs

 

Su

 

XX

Hi su - I’m back, been in hospital! Called the helpline last Thurs as my mouth was so sore and had ulcers. Thought id just see if I could get a mouth wash but was asked to pop to hospital to check bloods to be safe.
Bloods came up with low blood count and pos infection so ended up on anti biotic and a 5 day hospital stay!
Must say mouth wash was a god send so any sign of soreness ladies ask for it as I got to the point of not being able to speak or eat.
Feeling great at the moment - almost normal!!
Hope every one else is feeling ok - the SE seem to have hit some of you hard :frowning:
Huge welcome to the new ladies on here - not good to be in this position but this thread is a fantastic support to us all.
Every day is a step closer ?

Blimey Crystalbella, 

 

What a nightmare, at least they are being vigilant with you, make the most of feeling great - I feel normal (ish) too, mouth is sore, but am using all the mouthwashes and thrush gel (lovely).  Still no sign of hair shedding, but I’m sure it will be along shortly, i’m day 13 post chemo, and I think it commonly starts day 14.

 

Good luck with all the results Katy, it is a tough wait, but I hope it is worth it - look forward to a positive update later.

 

Big hugs

 

Su

 

XX

Hi Judi,

 

Hope it all went well today and that you didn’t get snowed in anywhere! It’s good to feel positive, well I think it is anyway.

 

Katy, I am sooooo pleased your scan results were all clear, a huge releif for you, gives you the space to just focus on the treatment now.  I found the treatment really quick, I was done in just over an hour.  Sipped my hot chocolate throughout.  I’m sure tomorrows dose will be fine.

 

I was shocked at how tired I got a few days after my first FEC, I slept for at least four hours every afternoon, dogs were not happy.

 

Sandra, good luck with the second dose on the 4th, although I’m sure you don’t need it.

 

Sarah, I think I had my first on the same day as you, 16th and hair has started shedding today, bit traumatised, although I think it is more about the mess than anything.  Think I will shave it off on Saturday,  I didn’t bother with gentle products for my hair, just the usual.  My wig lady is annoying me now, she said she would call me on Tuesday, she didn’t, I called her yesterday and she is not returning my call, at this rate I will be bald before I get my wig!  I don’t have any scarves or anything, just a couple of my dog walking beanies.

 

Marli, are you having just Tax? or just starting with Tax? Just being nosey, hope you don’t mind. :womanhappy:  Half way through sounds really good!  Love your story about how obvious it is that chemo is working, very welcome, thank you.

 

Lisa, sounds like you overdid it a bit, I know I did, but learned quite quickly that I am human and the couch needs me!   I have said before I am really in awe of those of you working through, I am just not that brave or committed for that matter.  I hope you find a happy balance very soon.

 

Love to all of you

 

Su

 

XX

 

 

 

 

 

 

 

 

Hi Jenny,

 

It shedding a lot at the back of my head, as soon as I woke up and turned to face my biggy (that’s my big dog, as opposed to my little dog) I felt a big pull on the back of my head - turns out it was a clump of hair.  Then throughout the day, it has steadily been falling off, I was going to swerve washing my hair, but did anyway (why avoid the inevitable) and I lost a load more.  I don’t brush my hair either Jenny (havn’t since the early 1990’s, mines curly too).  I have read loads of stuff on this fab forum about scalps getting sore, but mine feels exactly the same, no sorenes at all. The only thing I have noticed the last couple of days is that the condition of my hair feels poor.  I love my haiir, people always tell me I am lucky to have great hair, but I am not too fussed about losing it (we are all different and I know it if very scary for some women). I found a really good charity:

 

heathershair.co.uk/Heathers_Hair/Welcome.html

 

And I got two of their peices to wear under my beanies, the website does not do them justice (only thing is the bald OH has decided that he wants one of them!)  They only charge £2 for p&p although welcome a donation.

 

Don’t worry too much Jenny, I have read loads of good stories about cold capping on here.

 

I pick my wig up on Monday, phew, she got back to me.

 

Su

 

XX

Hi Lynny, 

 

Good luck for tomorrow, and enjoy your ride in a Landrover.

 

Hi Sarah,

 

Shaving it off is not for everybody, but I think right for me, I have posted a link to Heathers Hair in a post below, have a look, my peices look very good on my OH head under a beanie, a bit of hair makes all the difference.

 

Welcome back Lou, we have missed you! - My next isn’t until the 10th so we will be closer together in terms of SE.  I havn’t felt tired at all this week, although I am sure it would be a different story if I was going to work.  There is nothing wrong with taking it easy Lou, maybe you should take your own advice. :womanhappy:

 

Codiesue, I cannot wait to lose the strays on my chin - will I have to wait long?  Thank you for always popping in to see us and give us loads of support and information.

 

Strengh, perserverence and future good times!

 

Love Su

 

XX