July 2016 starters

Oncewild, hope the SE on Taxol continue to be minimal on you. How long do you get weekly doses for? And is that you then finished treatment?
Totally with you on your last post about “black box under bed”. I suppose once we have chemo done, then is the time when we can start to think when and how to tackle that box! Until then, mine is going to remain there and firmly shut lol.

Hi Sue

 

i have heard that the end of treatment is an extra emotional time - like you describe it gives space to reflect and think that you haven’t had before. Bittersweet emotions, no doubt not helped by exhaustion and low reserves. It is good tho, to recognise this ordeal as life changing and get help facing it as required. A good cry is a wonderful thing. I will take a look at the thread, thanks.

 

All the the best to you as your recovery continues x

 

 

Hi Ladies,

 

Glad to see everyone is still up and running! I was beginning to worry : )

I had my third and final FEC 10 days ago and have only just now started to feel human again…the effects have been definitely cumulative for me so I’m very happy that I’m now half way through. Weekly Paclitaxel starts on the 28th and I’m so glad to hear from OnceWild that it seems to be doable.

Sue, how fantastic that you’re finally finished. I’m so happy for you but totally understand how you must be feeling.

I had a similar wobble at the half way mark as I suddenly realised that soon the focus would be off ‘getting through treatment’ and on to ‘getting on with life’. It’s so weird how the treatment, horrid as it is, helps to focus the mind, we can concentrate on what we have to do next, how we can alleviate the symptoms, when our next appointment is, how to draw convincing fake eyebrows…; ) and we can avoid thinking about the ‘other’ stuff. It’s definitely a good idea, if possible, not to deny those feelings when they arise. We all go on autopilot for six or so months and are possibly (if I’m anything to go by) slightly in denial, so it’s really heathy and totally normal to take time at the end of treatment to grieve for the things we’ve lost. Then after that, we can be grateful for the things we still have and for the things we will have gained from the experience.

love and hugs to everyone, pookie xxx

 

Pookie, glad to hear that like me you are now half way through chemo. Feels like a milestone. I’ve Tax 3 weekly to contend with next.
Totally with you on on the emotional stuff going on inside.
On a brighter note, it’s a lovely day today, am thinking of a nice drive out this afternoon, bit of a walk by the beach and we’ll call in for a McDonalds on the way home. Have a good weekend X

Enjoy your day Alex (and your McD’s!).

 

Quick question from me, has anybody here suffered from breathlessness / mild palpitations? I’m really struggling to catch my breath at the moment and I constantly feel quite tight in my chest. I’m not at all overweight and had no issues beforehand. I had this to a lesser extent after fec 2 and had an ecg to check heart and ct scan to check lungs which both came back fine. I was told just before last treatment that I was a bit aneamic and my blood counts were almost too low to go ahead…do you think that could be the reason?

Trying not to worry, but freaking out slightly!

Pookie x

Hi Pookie. Yes, I’ve had this and it was linked to low blood count. It will right itself I’m sure when you blood count improves. Alex, I always have a big dose of Piriton put through my port prior to my Taxol infusion plus Zantac which is an anti heartburn drug. Apparently the Piritin dose is way above the normal dosage so best to ask if you anticipate taking other antihistamines on top of what they will already be giving you. I have a book which each week they log in exactly what doses I’ve had and of what drugs plus all my blood results etc which is useful to post my ‘progress’.

Phew, thanks Bookworm and Sue, that makes me feel less worried. I will certainly call first thing on Monday though, just to let them know, although it does seem likely that it’s due to low bloods. 

Thanks again xx

Thanks Blueash. You have answered a few question I had re Tax. How have your nails been?

Hazel, sorry to hear you’re struggling a bit. you mention the Herceptin injection yesterday. Is that maybe making your symptoms worse? If so, maybe after a day or so you will start to feel improved. I don’t know, as I haven’t even started mine yet. I’m not sure if I get it with my Tax or when it’s finished.
Glad for you that you’re chemo is finished, if I remember correctly, I think your last one had to be cancelled? And yes, you still have more treatment ahead of you, which sucks, but you have done brilliantly to get this far and have always been supportive and informative on this forum. You will cope, because be it tomorrow or the next day, you will pick yourself up, put your brave face on, and carry on with the rest of your treatment. It is such a roller coaster of emotions. I’m sending you virtual hugs X ps I’m with you on people expecting you to be joyous about chemo being done. I don’t know how many people have said to me, that I must be so happy as I have only 3 more to do. Yeah right! Ecstatic - NOT!

Can I just say how much these recent posts have helped. Hazel, I couldn’t agree more. People mean well but unless they’ve been through this they haven’t got a clue. I feel in a similar hormonal state to you - I’m 48 too…has anything been mentioned about which hormonal cocktail they will put you on once chemo and rads completed? I guess on top of everything we are all completely mentally and emotionally spent. I’ve got weekly 6 taxols still to go, then radiotherapy but at least whilst on treatment you feel something is in your body actively working, as vile as the SEs are… I am so worried as to the uncertainty of when treatment is over, although I guess those of us who are hormone positive at least have some ongoing protection from endocrine treatment? My onc has mentioned ovary removal. Don’t know if anyone else has had that little nugget mentioned too? Anyway, big hugs to all July starters. You are all amazing xxx

Hi there Pookie,

My mums a survivor of Breast Cancer and I noticed your a horsey person, so if you need any Fiske’s Animal Care products for fund raising let me know and we will see what we can do. Whilst Fiske’s is used in Canada on horse, hounds, and Humans in the UK we are not yet licensed for the latter, so I’m afraid only on animals so far.

Kind Regards,

(removed due to Ts and Cs) 

Hi everyone,

 

Just wanted to share this with you.

 

I was at the Look Good Feel Better course today at my local Maggie’s centre, which was fab by the way, loads of great stuff including lancome, chanel, YSL, to name but a few. Still need to practice putting the make up on being a non-girly type though.

 

Anyway, got chatting to the girl I had been sitting next to after the class and she is having chemo before mastecomy. She has had 3 FEC and 1 T and her tumour has gone! Not shrunk, disappeared! She, like me, is also on herceptin. So for all you ladies who are suffering bad side effects from chemo at the moment, hang on in there as horrible as it is, think of the good it is doing.

 

Best wishes

 

Hazel.x

Hazel, that is so good. I’m sure the girl is feeling it is all worth it and will give her the strength to carry on.
Glad you had a good day today. I’m due to go on Look Good Feeling Better course in October. I can’t wait and apparently you get great goody bag. I love make up and stuff. Keep practising lol X

Hello Ladies,  I initially joined this thread back in Jully, but have not been on the site much.  I am half way through my treatment, having had 3 x. FEC.  I have my next cycle next Wednesday -  will be having 3 x Docetaxel.  During my three cycles of FEC I have been admitted onto the Ward where I have had IV antibiotics and fluids.  It has been around the same time each cycle!!  Just wondered if any of you ladies have had the Docetaxel and what side effects you had, if any??  I have not had any sickness on the FEC’ in fact other than my short time in hospital, and tiredness, I have felt ok.  I appreciate we are all different but I am not sure how this next treatment will be!! 

Mad hatter, nice to hear how you’ve been doing. I’m on the same regime as you, FEC -T but unfortunately have no advice around T as I get my first one on Tuesday. Have you to get Herceptin Injections? I was wondering if you get these with first T also? I suppose, I’ll find out on Tuesday.
Sorry to hear you ended up in hospital for IVs etc. I’ve had pretty rubbish time on FEC, main one being nausea and mouth issues, but have also had infections due to ANC. but half way there and can’t wait to get first T done to see what SE it brings.
I had been looking at June thread to try and get some ideas around T side effects, as a few girls there are on T. However, some of them seemed to be having pretty rough time, so I stopped reading! In saying that, if you are doing ok, you’re perhaps not going to post as much, it’s only if you’re having problems and looking for advice/confirmation/support etc on things. So I’m sure there’s loads on T doing not too badly. I’m making the most of feeling more or less normal this week. Been out for dinner last 2 nights with friends and out again tonight. Mind you, I’m back home and in bed for after 10! Can’t heck the pace lol.
Let me know how you get on Wednesday.
Have a good weekend. X

Morning all. Sounds like everyone is doing well, despite the regimes we are all on. I asked for a PICC line as I was becoming increasingly stressed with the struggle to find a vein each week, plus I have cording along one vein from EC. The thought of going wibble for each of the 9 weekly bloods and cannulation for  Paclitaxol made me decide to ask. The doc just ordered it, no discussion at all so I read all about it, bought a waterproof cover and some skin coloured fabric to make myself a cover and psyched myself up. All to no avail as when I went to have it fitted on Friday they couldn’t get it in. Two nurses and three attempts later they admitted defeat as my veins were very deep and not consistently wide enough to take the guide wire. Luckily I was well numbed up so, although unpleasant, all of the poking didn’t hurt. The lovely matron took charge and offered me a Hickman line instead. I have to say I wasn’t keen - living with a tube going into my arm for six weeks felt bad enough, but one going into my neck felt like a different level all together. The matron was lovely and gave me the time and details needed to make a decision. Interestingly everyone on the procedures unit said that they wished patients were referred much earlier and that having a line in from the start of chemo is routine in most western countries. 

 

So so I now have a white tube protruding from my chest wall with stitches holding it in place at the entry site and in my neck where it ends after burrowing through the skin. Hopefully when the dressings are off it will tuck into my bra and hardly be visible (neckline permitting). Trying not to be too grossed out by it all and focussing on the fact that when I went for treatment afterwards it was brilliantly easy!  If anyone would like a natty little waterproof PICC line cover do let me know! 

 

I am pleased to report that I am still feeling fine after Paclitaxol number 3. Had a great week last week including a 17 m cycle ride with my cousin one glorious day. Felt properly normal for first time in ages. 

 

Also so had a meeting in work with my boss and HR, where we talked about a phased return when chemo is done, mid to late Nov. Better get on with all the jobs on my very long list as it will be here before I know it! 

Oncewild, that was an experience to go through! At least they had a Plan B and you got port fitted. Not what you wanted, but at least it will help with the weekly infusions.
Really good that you aren’t experiencing too many side effects on your weekly Paclitaxol. Can’t believe you did a 17 mile cycle!!! You must be very fit. I get exhausted even meeting friends for coffee lol. I think I need to get out in the fresh air more.
Really good that you’re thinking already about returning to work at the end of your chemo. Have you radiotherapy to get?
I can’t envisage that I would be returning to work until the New Year. And the thought of going back into such a busy environment fills me with fear. Hopefully I’ll feel stronger about it once chemo is finished. All being well my chemo and radiotherapy should be finished by Christmas.

Hi Alex

i don’t feel fit at all - before DD (Diagnosis Day) I was training to do a long mountain bike trail so am longing to get back to full fitness and get out there. For now I try to get some form of exercise everyday, though mostly it is just walking the dog. I copied this from a U.S. Cancer forum as it felt relevant for me “Run when you can, walk when you have to, crawl if you must; just never give up.” 

 

it is odd to be thinking about going back to work. While I think it will be good to get back to some kind of normality, when I was in the building I had a strong sense of it the being same old hassles/routine/great stuff and boring  stuff. I feel like I have changed so much and nothing in my life will ever be the same again and therefore it may be hard to slot back in. Needs must - I go down to halfpay on 30/11!!! 

 

I think I am having radiotherapy too. Seeing the Onc on weds so expect confirmation then. Am borderline ER +ve (score of 4) so need a decision on that too. I want every single evidence based treatment possible as I want to live a long and healthy life! Might change my mind if Letrazole is complex to live with. Funny how I went on HRT four years ago due to ‘intolerable’ night sweats and now I just go with the flow, day and night, puce one minute and cold the next without stressing. 

 

Onwards all! x

 

Mad hatter, good luck for first Taxotere today. I had mine yesterday. Not too much to report. Chemo Nurse sat with me for first 15 mins in case of reaction and then 15 min obs after that. I queried Herceptin Injection, but apparently I don’t get them until the day after last T.
Couldn’t say, I felt bad, yesterday, just a bit strange. Chemo taste in mouth, nose and head. Felt slight nausea. Wasn’t able to eat normal dinner, small potato and spaghetti hoops, and they tasted weird. Mouth seems to be affected quite quickly. Onc said to expect tongue to be coated in white by weekend and taste buds effected ? She also said to expect bad aches and pains, but to just keep up with pain killers.
Had good sleep last night until about 6am, although I did take a sleeping tablet! I got these of GP as my sleep pattern was horrendous. I only take them the first week or so of chemo, as nothing worse if you are really unwell and up half the night.
So, so far, not too much to report. Just feel a bit icky. Just had cuppa and took steroids and sickness tablet and still in bed taking it easy. Think it kicks in more at the weekend. Keep me posted how you get on X

Oncewild, I’m totally with you on how you feel with regards to how you have changed and that nothing in your life will ever be the same again and therefore it may be hard to slot back in. I think we probably all feel like that to some degree. I suppose once we finish chemo, then is the time to start re-evaluating everything. I don’t think I am in the right frame of mind to change anything at the moment, I just try and get through each day at a time.
I go down to halfpay too at start November. Not looking forward to that, but am thankful that I have had full pay so far, as reading through some posts, others only have SSP or have had to use leave while off and also trying to work through chemo! I have been careful with my money, so hoping it won’t be too much of a strain until I start back hopefully in the New Year.
Good luck for more of your long cycle rides!