How long do you expect to wait for chemo to start

[Tinkerbell72]

Yeah defo

[gazzlyn]

Hi Tinkerbell, no news yet, but have heart scan tomorrow so hopefully wont be much longer now xx

[Tinkerbell72]

Hi lovely have just read your mesage hopefully by now you may of heard when your chemo is starting??  I had my masectomy 30th December and will begin my first chemo 20th Feb - roughly 7 weeks.  I did chase up my appointment mind you about 3 weeks ago as was getting fed up and just wanted to get cracking.  I have been seen for a few appointments now and have been offered to take part in a trial (not sure if this has quickened up things??).  You feel you just want to get things moving dont you, but was also told that they will wait for a good recovery after surgery also.  Hope you have some news soon

xx

[gazzlyn]

Thanks Carmen, I am hoping once I get started on the chemo I will start to think differently.  It is the waiting game all the time that is so hard.  Hope your doing ok xxx

[Carmen42]

I have also been struggling to sleep since finding the lump and diagnosis. My GP initially prescribed zopliclone but I found that I was only sleeping between 2-4hours with that. So I am now on a very low dose of amitriptyline which I find much more helpful.

My mind and worries have improved in the past few days. The fear of chemo was a huge thing and only now that I have recovered from the side effects of the first cycle have I started to feel calmer.

Accept your feelings, fear, rage, despair, whatever they are because you are the one going through this and its so hard.

Thinking of you xx

[gazzlyn]

Thanks Donna I will start moisturising right away. If things don't improve mind wise I will get an appointment with G.P xx

[Donnaandfamily]

Hi Gazza

you should start moisturising your breast now (and armpit if radiotherapy to be administered there) - they recommend any unperfumed like E45 or aqueous cream and the same with soap.

I also used a non metallic deodorant (from boots) which is ok to use during radiotherapy

It is normal to feel so low and everything out of control. I had difficulty sleeping and my GP prescribed low dose zopiclone..which helps me to drift off to sleep. I too was very strong and could take on the world...... don't be afraid to ask for help...... I also take citalopram which again is mild but helps me focus and to get some sleep.

Take each day at a time and allow yourself to have low days ....there will be good days again....its just hard to see the wood for the trees at the moment

Take care ...... xx

Aq

[gazzlyn]

Thank you Carmen xx

[gazzlyn]

Hi Donna,  Thankyou for your detailed reply it really has helped in giving some idea what I may expect once I get started on this chemo!  Did you use any particular cream to moisture before radiotherapy or are they particular about a certain brand/product?  I think your right when you say our minds are what cause the fear! somedays I just wish I could shut my mind down! honestly it is so hard when everyone keeps saying....be positive...your a strong women....you can beat this!  I just want to scream and say actually I dont feel strong, I dont feel positive and I am just scared!  I guess its early days and I am hoping that once I get started on treatment I will be able to look forward.  Thank you again for your advise xxx

[Carmen42]

Hi Lynda sorry to confuse you I'm only waiting for clarification on my HER2 status, it doesn't effect a choice for or against chemo just whether herceptin is required afterwards... it's completely understandable to be scared about all of this, you wouldn't be normal if you had no worries.
I've spent many hours talking to my breast care nurse about my worries and she's fab, really helps me put things into perspective... use any support you can.
Take care xx

[Donnaandfamily]

Hi Gazza

It is difficult being a nurse...especially in the hospital I used to work in...I wanted to be a patient not the ward sister I was previously (Now area manager for Care homes). But I have no experience of breast care so all new to me.

I had my 14th course of herceptin last Thursday (4 to go) and I am on Anastrazole (was initially tamoxifen but had my ovaries removed when I had a cyst removed).

I was fortunate with my veins holding up and did not have any sickness ( we were  given emend one hour prior to the chemo and 2 tablets for the following 2 days). I chose not to have the steroids with my chemo...I took the ones given with the chemo but did not take the ones given to take at home. My consultant was happy with that as they are mainly to help you on days when you may lack appetite etc.

The past year flew by.... i found that after each session the next 3 weeks flew by.

I had very few side effects..... I used to spike a temperature every 4th day after the chemo.... frustrating as I had to go and have bloods taken..... but fortunately was allowed home as white count good.

I did not have any bone pain with the G-CSF..........so hopefully you will be the same

I used to feel "tired and under the weather" for 4 days post FEC; and once on the T - I used to feel "under the weather" a bit longer.....usually 7 days. ........but I would still go out shopping and manage to cook the family meal.....so it wasn't terrible...but not like we usually are

I found it difficult to sleep...usually my mind going overtime and obviously the increased amount of water I was drinking....you will know as nurses we often go all day without a pee!!

It was scary once chemo finished....was used to the routine....then the radiotherapy started......again this is painless....... its our minds that cause the fear. I used to moisturise the breast x2 daily and didn't have any redness or soreness

It felt hard and tender for some time post treatment (breast). I developed breast and arm lymphoedema in November..(3 months post radiotherapy)... the lymphoedema nurse was excellent...and it has decreased considerably. They recommend a prophylactic course of antibiotics to keep at home if you have lymphoedema to take ASAP if signs of infection in affected area.

I a now back at work.... still have odd days feel a bit tired ..... and some aches from the anastrazole...nothing 2 burofen doesn't relieve first thing in the morning

I know it is scary...... and nothing takes that away...... but I hope my story helps alleviate some of your anxieties.

Take care

Best wishes xx

[gazzlyn]

Hi Carmen, I am confused? I replied to you on another thread too which I found lol. You said you are waiting for your test results but have started chemo anyway? is that right? sorry if I sound thick xxx

[gazzlyn]

Hi Donna Thank you for your advise, I am too a nurse (community nurse) but as you said its so different being the other side. I want to be treated as a patient not a nurse because at times all what I know goes completely out of the window as I am so scared. How are you doing now? xx

[Carmen42]

Hi gazzlyn,

I started chemo six weeks after surgery, would have been five but I was waiting for my oncotype-dx test result to come back and it was delayed because of Xmas/New Year.

As Donna said the anticipation of the first cycle is the worst because you really have no idea of what to expect with regards to side effects etc. and everyone reacts differently. Definitely drink lots of water for the first few days, the anti-sickness meds will probably cause constipation so a good fluid intake is important. I bought cheap 2 litre bottled water so that I knew I was drinking at least 2 litres daily. 

Also ask about scalp cooling, it can help prevent hair loss.

I am halfway between cycles 1 and 2 and feeling fabulous! If you do struggle with side effects, try to hold onto the knowledge that they will pass... 

Good luck xx

[Donnaandfamily]

Hi Pandorra

I'm sorry to hear you have joined this "club". I hope your outcome is the easiest it can be.

I did keep a daily diary so that I could compare my "symptoms" the following month...it proved very reassuring at times when I could see a trend.

The waiting is horrific....you just want to get on with it and get through to the other side.

I wish you all the best xxx

[pandorra1]

Hi donnaandfamily, your response to Gazzylyn was so comforting.  Just the way in which you have used your wording makes an honest,easy read. Thankyou. I don't know what my outcome is yet, have to wait until 20th feb, but in the meantime to digest the great tips and advice from all the wonderful ladies here, it is received with such gratitude.  Lol to all xxxxxx

[Donnaandfamily]

Hi Gazzlyn

I finished chemo (FEC-T) last August, then had 15 x radiotherapy.....and continue on Herceprin (18 sessions) every 3 weeks for another couple of months...and anastrazole for 5 years

It is all so scary...(and I am a nurse - different being on the receiving end) when you start the chemo the time goes very fast because you are waiting for the next cycle.

I would say don't listen to other peoples horror stories - everyone is different and this is your journey.

The best advice I would give you is drink plenty of water each day......and any niggling issues (like indigestion, constipation etc) see your GP/team ASAP...don't put up with any side effects you don't have to.

I hope you hear soon when you will start. Before you go for your chemo sessions always keep your hands/arm warm; it makes the veins more prominent so easier to put the cannula in. (if you had nodes taken from you axilla...they will use the other  unaffected arm to administer the chemotherapy)

Good luck...you will be fine..... once you have had the first session it will be less scary xxx

[gazzlyn]

Thanks Donna, I have had surgery 3 weeks ago so I guess I should hear something soon. Thank you for your reassurance. Are you going through chemo at the moment or have you finished? xxx

[Donnaandfamily]

Hi Gazzlyn
if you have surgery first they usually wait 5 weeks before commencing chemo
Some people have chemo prior to surgery; depends on what your consultant decides.
You should be told your treatment plan soon as they have the results.
I know it is scary but if I can reassure you ....it doesnt hurt having chemo and the anitsickness medications are excellent; especially emend. The worst part is your own mind....but you will be fine
I wish you well...... XX

[gazzlyn]

Hi Ladies,

Wondered if any of you can give me an idea how long you normally have to wait to start chemo once its been decided thats what is happening? xx