Hello ladies. Very quiet here but i suppose that is because everyone is getting back their lives, which is great.
Have been to see oncologist today and am going to resume my treatment 26th of this month.
My heart is recovering well and I am restarting the Herceptin in conjunction with the perjeta. Because my case was apparently unusual and I had the chemo before surgery they know that there was only a little (2mm) of tumour left in the breast after surgery. So I will have the remaining 9 perjeta together with Herceptin and then they will probably stop treatment. Will have had only 13 Herceptin by then but he feels that in view of the very good results that should be enough. I am over the moon as this means I should finish treatment in February and have this blinking Hickman line out.
Please let me know how you all are keeping. I have missed hearing about you all.
Totally understand the fatigue, that is the biggest problem at the moment. I don't work which is just as well as couldn't do it now. I don't sleep well at the moment as the mastectomy side is painful and the HICKMAN line side is uncomfortable, I need to cuddle a pillow to take the weight but then I get so hot. Vicious circle.
Take care of that burny boob . Good luck with all your appointments. I see cardiologist next week and have an echocariogramm in August. Take care. Marli xx
Just back from seeing the Breast Surgeon and she is extremely pleased. When they checked the removed breast they could only find 2mm (yes 2mm) of cancer left in the breast following chemo.They had to phone the surgeon to check that there had been something there as they could not find it and she directed it to the region. When I started chemo the whole of the bottom half of my right breast was covered in inflammatory breast cancer as well as there being cancer cells showing in the breast itself. So she thinks there will be no more actual chemo. Still got to finish the Perjeta and the Herceptin. So relieved !!
Hope everyone is feeling well. xxx
Well got the dressing off today and must say scar not as bad as I had anticipated. Still quite sore and some pain but bearable. Drains were in 7 days which was a right old pain so glad when they went. Been to chiropodists this morning with the beginnings of an ingrowing toenails. Off to have Hickman Line flushed and then to see BCN to have wound checked before clinic next week. Will enquire when I can expect to re-start Perjeta and Herceptin again cos I just want to get things over as soon as possible.
How is everyone?
Those who have finished radiotherapy I hope your skin is recovering and you are more comfortable.
Those returning to work - hope that is going well and that you are taking care not to overdo things. Although I bet it is nice to be getting a bit of normality back into your lives.
Tomcat - how has your dental treatment gone?
Thinking of you all. Enjoy the nice weekend. Marli xx
I am glad to hear you are ok after the op!
The wedding and the trip was great thanks. Now I am buried under piles of laundry. We are away with friends this weekend and then I go to Hungary on monday for dental work (ouch) which I can finaly have done.
I have three weekly Herceptin still - tomorrow is the day.
My radio burns got worse in the week after radio! I wasn't expecting it. I got some gel stuff to put on and cover with gauze parafin dressing but it was very messy and very difficult to do with big boobs!. i am still putting cream on 3 weeks later as its a mess. My breast is still the wrong colour and really hot but it has peeled and the skin is now all intact and no brakages (had under arm and under brast). I am getting pain though. At least I dont seem to need ice packs after the hydrogel.
I worked today for 4 hours and then collapsed in a heap after a trip to pick up my tamoifen - i wil start that tomorrow. Its already 3 weeks late as I coudn't get hold of the prescription so one more day is not going to hurt!
My plan is to try and be back at work in a couple of weeks properly - mind you, i got a letter fro the National insurance asking me to come for medical, it came while I was away so they fined me!
Hi ladies - hope you are all well and enjoying the fine weather.
Well I had my mastectomy on Monday (8am) and stayed in overnight because was a bit worried re. the Herceptin heart thing but no problems. Came home 11.30 yesterday morning and had a great nights sleep last night. My daughter is staying a couple of nights which is lovely and then again next week when hubby goes on a golf holiday.
Still have my drain in which I don't like and had hope would be out today but still in - nurse coming again tomorrow. Was all a lot easier that anticipated. Next step to get Herceptin going again.
TomCat - how did your wedding trip go.?
Caroline - is work still ok?
Look forward to all your news. Marli xx
Hair is quite auburn but hubby seems to like it and it will fade. And it is not grey and wiry.
I live Co. Durham , close to Darlington so Leeds is quite close by train. Will bear in mind for future.
I feel I know my chemo nurse very well as am there every week to have Hickman flushed.
Take care and get plenty of rest after work. Marli xx
Glad you are finished your rads Tomcat. Here they can give gel pads/dressings to help with burns. I didn't need any as skin coped fairly well.
Presume it is your wedding visit soon. Hope you are well recovered for it,
Enjoy! Marli xx
I had 20 days of radiotherpy.
I now have a dark brown burn under my arm which is killing me. My breast is light brown brown and sore. My npple is painful and I have what lok like fag burns under my ample bosom.
Can't wait to fly on Thursday
Sounds like you are well prepared already. Im not sure where you are but the closest for me is Leeds.
It's a bit of a trek but worth the journey. Ive also ordered on line from them and returns are free.
There are other shops probably best to google them to find the nearest to you.
I feel like I know the women who does the fitting at my hospital as Ive been back so many times..... lol I think I found it hard to settle with mine because chemo seemed to make my scar very sensitive and my weight was very up and down.
You can always re colour your hair in a few weeks if your not hapy with the colour but anything is better than grey if you ask me.
Well done for going to work but do take it easy.
Info about bras is really useful. I am an F cup so getting bras can be tricky but hope to use some of pre-BC bras - have bought some bra extenders to make it more comfortable around the chest as most of my bras are wireless. Bought some soft front fasteners from Amazon when I broke my wrist so will use them.
Where is the Nicola Jane shop, it might be worth a visit rather than mail order.
My friend works for the service that fits and provides the prosthesis at my hospital so well equipped there.
Coloured my hair today after having it trimmed. A bit more red than anticipated but will get used to it and better than the wire wool look. Marli xx
Work was ok, felt a bit drained towards the end of the week but suppose it's to be expected. I did feel better getting back tho and got a very warm welcome from my colleagues. Planning on working 3 mornings this week.
After my MX I went without a bra for the first week and covered up with scarves when my teenage boys were around. The second week I really wanted some gentle support (Im a D cup) so went to the Nicola Jane shop and bought a post surgery front fastening Royce bra. Think it was about £20. This was easier to put on than a back fastening one and very soft and comfortable.
Ive bought quite a few bras from Nicola Jane and they have been very good. Not the cheapest but I think you get what you pay for with underwear. I did look at a couple from Asda which where under £10 each and they were nice enough but just not supportive enough for me.
Some women on here have managed with their pre surgery bras but that didn't work out for me.
Oh and Nicola Jane have a pocket sewing service. Ive had a pockets sewn into 2 pre surgery bikinis as we off on hols soon. They've done a really good job! Much cheaper than buying new cosi.
When you are discharged from hospital (the day after surgery for me) you will be given a softie to wear in your underwear. This just gives a bit of shape if you want it.
I was fitted with my permanent silicone prosthesis 6 weeks after surgery and Ive been back many times since but now finally have the right one for me. Oh and I was also gives a MX bra but Im not sure if this is common practice.
Hope this helps and good luck xx
Well I've done it and coloured my hair. Hairdresser came to trim my hair and offered to apply it for me before she went. Rinsed it off and still have hair. It is more red than anticipated but at least it is not grey anymore. Sure I'll get used to it as always had hints of red (ginger way back in family). Feel a bit more like me. When I wake up from surgery at least I won't look as if I have wire wool on my head.
Hope every one is well. xx
Hi Caroline . Hope work did not wear you out too much. Agree a slow phased return is best although it must be nice to get back to the social element of work. I don't work now and have close of friends but miss the everyday banter.
Can I ask what I need by way of bra after mastectomy. Like to be prepared.
I hadn't expected to live without a boob so like you think the emotional side is a worry.
Going to colour my hair on Tuesday after my allergy test. It is grey and frizzy and makes me look like my brother who is a right scruff. lol
How is everybody keeping. The warm weather was nice but dull and rainy in Co. Durham today. Marli xx
Well done J and Tomcat finally finishing radiotherapy. Its been a long haul but you've done it!
My skin broke down at the end of treatment but it quickly healed and the tiredness takes time but it does pass.
J..... please don't take this the wrong way but Cancer Relief have a small grants scheme. It might be worth applying for a grant to fund a short break. Ive got the details of the contact at Haven who put me in touch with them recently. If your interested send me a private message on here and I will send you her details. x
Marli ... you've finally got a date for your mastectomy. I hope that's a relief.
For me the surgery was easier than the chemotherapy. Hope it's the same for you.
It took about 6 weeks to heal and recover properly. Seroma was a bit of an issue but that settled as I was told it would (without being drained therefore no infections) within 6 weeks.
I found the pain to be minimal infact the whole area was quite numb for a while. I still dont have any feeling in my back or underarm and this is normal according to my BCN. The feeling will return in time.
My advice would be to try to keep mobile post surgery. I walked most days and this really helped. Also keep up with the exercises as they really help too.
Emotionally it's a bit rubbish and Im still dealing and coming to terms with body issues.....but hay it's going to take time. Guess I just miss my left breast, but loosing it saved my life ..... what can I say.
Good Luck Marli and I wish you well x
Ive started back to work this week on phased return. Just two mornings this week and it's been ok. Planning to gradually build back up to my usual 30 hour week. But Im taking things slowly.
It's such a releif to not have BC as my main focus anymore and to be starting to get my life back in order.
Yes Im getting there girls and I hope you are too.
Lots of Love, Caroline xx
Great to hear that everyone is moving on from active treatment. Are most of you back at work now ?
J and Tomcat - well done on finishing rads. Hope skin continues to behave. Remember mine was a little sore for a couple of weeks but soon recovered , just be careful if wearing a bra or underwear that might rub. I used my aqueous cream and a little Aloe Vera gel.
Got my date for surgery - 29th June so am now getting a little anxious. Who had a mastectomy and how did it go, what can I expect?
Still having the Perjeta and think (?) I might restart Herceptin after surgery as slight improvement in heart results. Re-started Extremastan yesterday so will be interesting to see how that works out as only took it for a month before starting chemo.
Love hearing from you all. Marli x
oooh just saw the period and flushes info.
I had my last period in jan too. I get occasional hot flushes on my head rather than body and face and I have no idea if they will come back. I am 41, shop is closed with the drugs so honestly if they never come back I will be now delighted. It isn't like they were ever going to be of any use to me.
I was told today to use cold compresses on my breast a few times a day and to use the cream which will help to protect it and heal it. My skin isn't blistered or cracked but its getting close i think and the burns are not looking good. Luckily I am not sensitive and with the pain from my leg i have sort of ignored it. I think the nurse was suprised I hadn't said hi tilll day 16.
I am still going.
Today was day 16 out of 20 for Radio. I am getting there. I have slight soreness, browner patches on my breast and under my arm and today my nipple looked strange. Not at all painful or worrying but the techincican made sure I saw the nurse who has prescribed some cream to make sure it doesn't get worse as y next 4 treatments are boost treatments and a bit different.
I had my first of my three wekly herceptins this morning too. So nice to have had no needle for 3 weeks I can't even describe. Found the vain no issue, didn't bleed or bruise and it didn't hurt. So different.
I saw a question about working during Radio. It really depends. For the first week I didn't notice much difference but after that I have had some real bouts of extreme fatigue. I literally couldn't keep my eyes open and had no choice but to sleep. There are three afternoons where I slept for four or ive hours, got up for a while and then had a whole nights sleep and still felt wrecked on waking. It certainly seems to be cumlaitve and it affects you more as the time goes on. Apparently it can go on for weeks afterwards as the ceels repair and the body works hard.
I finish radio next Wednesday - Judah Sunday to Wednesday to go. I then see the radio nurse again and to check I am ok as she saw me today and wants to see me at the end. I have an appointment with the oncologist that week and I will ask if he wants any more tests etc and find out about tamoxifen or any other drugs etc. not sure exactly of the plan on that as we have left it till the end.
I still have the herniated disk and it has become worse with radio as I have been doing the 70km round trip every day and sitting and driving really isn't helping. I saw the back specialist last week and he wanted me to have spinal injections but I have refused for the moment as I have a flight on 18th and a wedding on 21st and I dont want the pain the hassle or the risk of a failed epidural (I get migraines). He sent me to the pain clinic and wants to see me when I get back. The pain doctor has given me something for nerve pain, a long acting narcotic for the pain and something to take for breakthrogh pain - we shall see. To that aim, I have worked almost nothing during radio because with the pain of the drive and the fatigue it hard. I work 7am - 3pm so some days I have managed 7am- 9am before I have gone out and the occasoinal 1pm-3pm but this week I think I did 2 or 3 hours!! Ridicuous really that I can work less wth radio than chemo but its just the way that it has worked. out.
I really would say I feel a 100 times better than I did a month ago. I don't feel 'ill' or word down. I am still in pain but it is becoming better managed. Today I made hubby work from home as I knew I coudn't deal with the drive the radio the herceptin and the drive but mainly I do it alone now. Sundays he comes with me 🙂 Next week someone local is starting too and I may try and get some lifts. Some days I really aven't been safe to drive and Israeli Motorways are a law to themselves - well nobody takes any notice of the laws put it that way - its very frighteing.
So I am nearly there. I finish on Wed. I fly the folowing Thurs. We have the wedding of my brother on Sunday and then a week at Butlins Bognor with my husband, 12 yr old son and my folks are coming too so we can see them 🙂
Ladies - we are nearly there!
J....... I think you such a warrior as you manage to work through your treatment but you must be knackered!
At least your almost done really hope you got a holiday planned cos sounds like you need it!
Folks keep telling me that the se from the various hormone tabs get easier with time. Guess we just have to wait and see. I'm getting mild hot flushes and some join pain but its bearable for now anyway.
Successful visit to the hairdresser. Now have semi permanent hair colour and it hasn't fallen out lol, not yet anyway. my hairdresser who is also a good friend told me that the re growth is full and Strong but most important its even. Soooooo glad I shaved!
My hair looks and feel so much better. Glad I took the plunge. Will be ditching the hat tomorrow weather permitting as got a lunch date with my sister.
hi to everyone else xx
Good to hear your feeling more like your old self. Good Luck next week and hope you get a date for your op soon. I must say that I found chemotherapy much harder than the surgery.
I am also feeling much more like me and Ive decided it time to get back to work so Im going into work this week to discuss a phased return starting next week. I plan to build my hours up slowly.
Yikes, Ive been off almost 8 months!
The hair is growing back nicely. Ive got about half an inch of re growth. Its returned varying shades of grey but Im happy to have a covering! Ive got an appointment with my hairdresser tomorrow for some colour. I know the advice is to wait 6 months but this steely grey just has to go and thinking Ive nothing to loose as been covering my head since mid December when I gave up on the cold cap. Im hoping to even things up and then will feel brave enough to ditch the hat. That's if the weather warms up.
Will let you know how I get on.
Oh and my eyebrows have returned! delighted. Ive tinted them and they haven't fallen out so fingers crosses my hair the same.
Im on my 3rd pack of hormone tabs and getting mild hot flushes and some joint & carpal tunnel type pain but it's not so bad. Seeing my GP Wednesday to discuss. Im told the SE reduce given time.
The fatigue is still creeping up on me but it passes. We just have to listen to ourselves and rest when we need to dont we. My BCN keeps reminding me that the body needs time to heal...
To be honest, Im just happy to have finished with chemo.
Hoping everyone else is ok and radiotherapy is being kind.
Lots of Love, Caroline xx
Hope everyone else ok and the radiotherapy being kind
Hello everyone. I've not been posting on here much but have been reading every day. How is everyone?
Tomcat - Is your hair growing any more in time for this wedding? You must be near the end of radiotherapy now. Any improvement in the problems with your back?
Caroline - How are you getting on with the hormone tablets? Hope your energy is returning as well as your hair.
J - you must only have a couple of radiotherapy sessions to go. How is you skin holding out?
Can't find any recent posts from Em and Hazel. Hope you are both keeping well and recovering.
I must admit that I am feeling more my usual self and even did some Spring Cleaning yesterday.
See my Breast Surgeon tomorrow regarding my mastectomy date which I don't think is before late June because she is on holiday for 2 weeks. Getting twitchy as want to get it over so can move on - just getting back to normal and going to be knocked back again. Had Echo a few weeks ago and it showed a little improvement so will wait to see what Onc says next week.
Looking forward to hearing how you all are keeping. Marli xx
It sounds like everyone is making progress, albeit maybe not exactly how they expected to be.
After 6 weeks of NOT havinv my last 6 taxols, I finaly got the NO MORE TAXOL go ahead as it was causing too much damage. They are happy with how much i have had and my ACs before that.
The CT showed a bady herniated disk which was being made worse by the taxol. I saw the orthooedist who was angry no one had sent me earlier as he would have oeprated to releive the pressure on the nerves. The nerve damage is now semi permanent or permanent and I need intensive physio and have a leg splint to stop me falling. The pain is much much better ghough after orphone and steroids and lack of taxol so nt too worried.
I started radiotherpy today too. I am getting 4 weeks (20 days), Sunday to Thursday each week (working days here). luckily the car was serviced and tested for the year yesterday so i is now good for the every day 70km round trip!
I have almost 7 weeks of hair growth and it isn't nearly enough. The top isn't growing properly - grow hair grow - you have 5.5 weeks until this wedding 🙂
Thanks for your advice re work. I agree about being fully recovered before returning. My employer is sympathetic and there's no pressure to go back but I am down to zero pay now & although finances are stretched we are coping for the time being. But I won't be going back till I'm ready.
The hidden cost of cancer is massive isn't it. I'm lucky to have the support of my husband. Others are not so fortunate & have no choice about working through the treatment. God knows how they manage.
Good to know hear about your Breast Buddy's reconstruction. My surgeon told me that the tummy one has the best results.
Thanks for your good wishes. I think we try to recover as quickly as possible and then get frustrated and disappointed when we don't.
When I was dx 5 years ago (the day after school broke up for summer) I ended up being off work for a full year. Could have gone back in July but not keen as had not much hair and of course it was the start of the summer holidays again !! BUT I feel that I really needed that time to recover from all of the treatment. Also went back on phased return. I was lucky that my employer paid full pay for 6 months and then 6 months half pay. More difficult if finance is an issue I know.
If you can I would give yourself more time to recover physically and emotionally, especially as the warmer weather is coming.
My reconstruction would have been from the tummy - one of my Breast Buddies had this and is thrilled with the results. Marli xx
Good to hear you've finally got your pot off and hope you get full movement back and your able to manage the pain.
It certainly sounds like you are being well looked after regarding your heart and your team seem to be making sure you are absolutely well enough to cope with the surgery.
I know it must be frustrating for you but it's for the best. It's a big op..
Fantastic that the chemo worked it's magic and no secondaries!!!!
Hope your going somewhere fabulous for your break you certainly deserve it.
Like you I am recovering from the chemotherapy but I am disappointed that I don't feel well enough to go back to work just yet as the cumulative effect for the chemo has really caught up with me and I feel exhausted a lot of the time. I am hoping to return to work soon though......
Im 10 days into taking hormone tabs and noticing mild flushes and a some joint pain but it's nothing I carn't cope with at the moment. Fingers crossed .....
Had check up appointment with my surgeon this am and all is well. We discussed reconstruction as
back in Oct when I had my mx I couldn't even consider it as I just needed to get the surgery and chemo out of the way asap. ( back then recon would have meant 6 months recovery before could start chemo)
After discussion today I may just get it done. Maybe next year as will take some planning with work etc... For me recon will involve taking tissue from the tummy area (must eat more cake) and re locate it upwards. Sounds like a tummy tuck into the bargain........win win ha ha ...... but seriously Im am struggling with prosthesis & bras/what to wear now/has the prosthetic slipped/do I look even?/better not learn forward in this top/ etc etc.........yeah definately considering it
Hope everyone else recovering well and coping.
Lots of Love xx
Hi ladies - how is everyone keeping . Hope our spirits are rising. Em. Caroline and J hope you are recovering from chemo.
Tomcat - what is the latest news regarding your problems?
Hazelr - how has your surgery gone?
Well had pot taken off last Wednesday and it is very painful still, movement still restricted and still can't drive which is very depressing as can't get out as only 1 bus an hour until 2.30 which is not really helpful. Still have cleaning lady - just as well. She told me my house is "very dusty" - duh! nothing much done since December which is why I need a cleaner.
Feeling better after end of chemo - hair holding out but nails seem to be lifting so I keep them taped down most of time. Pertuzamab seems to give me a tummy upset for a couple of days. Also very, very tired most of time.
Had a Hickman Line fitted almost 3 weeks ago and should have stitches removed on Wednesday. Can't say I like it but needs must and it did make having treatment much better.
Treatment plan has been turned completely upside down :-
Am taking 2 lots of tablets for heart problem and have been assigned a cardio nurse! As a result Plastic surgeon wont do immediate reconstruction so will be having a mastectomy only which was not something I was prepared for.
No date for surgery because they want to see results of echocardiogram which is on Wednesday. So don't think it will be before June due to Bank Holidays - she operates on a Monday. Have booked a short break for end of May to set us up for surgery.
Good news is that CT Scans came back clear so no secondaries . MRI results showed nothing in "good" breast and that BC breast shows good results from the chemo. So will just plod on and take what they decide to throw at me.
Please let me know how you all are and what is in store for you all. Look forward to hearing from you. Love and hugs Marli xx
Heck ..... take your point Anna but didn't enter my (chemo altered) brain to use the word in a derogaory way.
I just couldn't imagine why it had been bleeped out. Thanks for explaining.
The world has gone quite mad x
The c.h.i.n.k word is "bleeped" out because it can be used as a derogatory description for those of chinese descent. How about using the word clink to represent raising of glasses to each other? Although i cannot imagine anyone here using the word in a derisory way, it is a word that still needs to remain on the "bleep" list for the future. Sadly not everyone in this world is tolerant of others.
I have just been reading everyone's update - so here is mine.
This week, on Thursday, should have been my 12th Herceptin and Taxol. Instead, I haven't actually had Taxol, only herceptin for the last 5 treatments and today it was confirmed that I won't be having more.
They have been trying to decide for ages if I had a slipped disk issue or a neuropathy issue as I have had such extreme pain in my hip back and leg and also my knee to toes on one leg isn't working properly. After having CTs they finally confimed that I have a nasty herniated disk and they think that the Taxol was making the pain worse (yeah - I told them that 5 weeks ago:)). So no more chemo for me.
I now have 5 weeks of head fluff.
I feel like I am living at the hosital though as stil going weekly for Herceptin and seem to be there all the time.
Sunday I had my appointment with the radiothepry dr who wa lovely. She exaplined the options which look like 4 weeks or more likely 6 weeks of radio, Sunday to Thursday (70k round trip as usual each time). I am waiting to hear, now I am clear for radio today, if I get to do it now or wait till July as I can't split it over my time in the UK at the end fo June.
Today I saw the oncologist to discuss what has happenned and what next (thanks could have done that on the phone).
Tomorrow I have to go and see the orthorpeadist as he only works Tuesdays!!
Thursday is m last weekly weekly Herceptin.
I have Herceptin next week too and then its three weekly after that.
So that is me. My pain i much reduced but nerve function is weird.
Apparently I wont get any scans or anything at the end of the treatment - they just assume as it was adjuvent treatment that everyting will be fine and I will get annual mamos and twice yearly checks of some type.
So I am stil here, chemo done and onwards 🙂
Oh and I may need back surgery!! trying not to think aout that
If I dont start radio in the next two weeks I want to travel to Hngary for dental work - I am SO desperate and now hav the all clear to do work.
I'm here ladies, a little late but here. Cheers !!!! (small glass of white wine)
Here's to our continuing good health and moving on. Love to you all. Marli xx