Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi Bibi
When I had my mast reconstruction and snb I was due to stay 1 day but had a lot of pain and stayed 2 nights but like you said it’s nice to get home . I got home really late on 23rd Dec and was so glad as due to Xmas there was no staff . My drain was in for 7 days . Didn’t have any district nurses .
Sounds like you’re having problems like I did with my arm and I ended up with a Hickman line which I’m so glad I did . Massage and stretching the arm helps but make sure you got no phlebitis otherwise you’ll need antibiotics perhaps give the unit a ring. Have you got one more chemo to go?
Member
Posts: 148
Registered: ‎22-01-2018

Re: February Chemo Starters 2018

Good morning everyone

Hi Woodie and thanks for that info - I have one more round of chemo and then will be having the same surgical procedure- I am quite anxious about it so that is useful to know. Interesting that it was just a day case as it seems such a big op - but who wants to be in hospital if they can go home - nothing like your own bed. My hospital have indicated it will probably be overnight but still have to discuss it all with surgeon.

Ive been having my chemo through cannula and have coped fine but noticed yesterday some cording developing in my lower arms, have felt a pull in right arm for a few weeks but have a dent as well now and one developing in left arm . Anyone got any tips on how to help veins cope/ recover? Have read heat packs and massage help. 

Feeling OK today after chemo yesterday - not dead lively but up and about and pottering a bit. 

Have a good weekend everyone x

 

Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

I was in & out as a Day case - no overnight stay at all! Right total mastectomy & full node clearance - was good to get in own bed that night and was given a number to ring if worried. The drains were very manageable & were both out in 5 days - the District Nurses visited daily from the day after to sort me out until they were ready to come out. Had a seroma which needed draining twice but again don’t worry that was painless. Pain relief was really good while on the ward and sent home with strong painkillers - important to keep up with them - better to prevent the pain than try & stop it once it starts. You’ll boss it don’t worry x
Member
Posts: 165
Registered: ‎30-11-2017

Re: February Chemo Starters 2018

Thanks, Woodie. Were you out of hosp after one night and did you need a lot of pain relief? Were the drains manageable at home and how long were they in? 

Frewarned is forearmed!

Tx for response.

Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

Hi Camilla9 - re the axillary clearance - my biggest piece of advice would be to do your exercises religiously post-op and keep up with the stretches after even if you don’t feel like it or it’s uncomfortable. I can still feel my muscles and tissue tightening up now if I miss for a few days through sheer laziness. I still have
numbness and strange itching although it is numb, as if the nerves are doing their best to recover.
I would say it has got a lot easier over the last 4-6 weeks. I won’t lie, think the axillary clearance was tougher than the mastectomy bit of my surgery in terms of recovery but I needed it and worth it to get rid of those pesky nodes! You’ll be fine I’m sure.
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi jencat
There is a lot of positive info on reputable web sites such as cancer research so don’t be afraid to read around the subject as I think you’ll learn it’s not all doom and gloom . There is a lot more going on in America too and positive things . Alot of research is going into TN .
Don’t be afraid to ring the consultant about your results . I did this after 6 weeks had to wait another 2 weeks to be seen but then at least you’ll know they are back .
Like your friend said eat healthy which I did before and I was extremely fit before ( not now since treatments) and live your life and enjoy things. It is scarey knowing there is no other treatment available but you must try to focus on life otherwise it will get the better of you. As you mentioned there are many TN survivors out there . I found someone like me in breast cancer support was useful and I communicate monthly with another TN survivor it helps that she had the same diagnosis as me and gives me hope x
Member
Posts: 1,751
Registered: ‎21-06-2017

Re: February Chemo Starters 2018

Hi Chrissie and Woodie, I'm from the Oct thread and TN too. I had WLE and then chemo, so another one who had the op first. I finished chemo at the end of Feb and now half way through rads.

I haven't googled about TN because the breast nurse said that all the worst stories come up first and the info can be out of date anyway.

I was also fortunate that I found the lump myself as I'd got another 8mths until my mammogram was due.

At the moment I'm waiting for the results of the BRCA testing, I was told 8-10 weeks before I got them and it's been 9 weeks now and I'm starting to feel a bit anxious! I've also got 2 daughters, 24 and 29, so I'm concerned for them.

On a positive note, I've got a friend who is TN and has been fine for 10 years and my ED has a work collegue who is 6 years clear. I asked my daughter if her friend had any tips and she said that she eats healthily xx

Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Well I would definitely make sure your girls get sorted too x hope it all goes well for you x
Re wind and belching it will pass I had it before . I find I lose one thing then another thing starts unfortunately. I’m getting ready for bed now as so tired but good luck with everything and hope you get some questions answered xx
Member
Posts: 5
Registered: ‎14-03-2018

Re: February Chemo Starters 2018

Unfortunately I have wind at the other end since starting on T. Any advice gratefully received! 

Member
Posts: 5
Registered: ‎14-03-2018

Re: February Chemo Starters 2018

Unfortunately I have wind athe other end since starting on T. Any advice gratefully received! 

Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

2 girls aged 23 & 26.. My Mum had ovarian Ca at age of 49 so I had prophylactic hysterectomy & ovaries out at 43 - she was subsequently tested for BRCA and found negative and a letter from 2006 said “this is reassuring for your daughter “ so I didn’t bother with the breasts other than mammos yearly - oh how I regret that now! My surgeon said I need the counselling & things have moved on since then in terms of predicting likelihood so hoping it will help inform my decision re other breast and also for my girls in the future.

Back to T side effects - any advice for constant belching/wind?! Can’t seem to shake that off either?
Member
Posts: 165
Registered: ‎30-11-2017

Re: February Chemo Starters 2018

Hi Woodie, I'm jumping in from the December group. You mentioned you had a full axillary clearance - I shall be having this next Weds.

 

How was it for you after the op? Any hints, tips, do's and don't s gratefully received. I go home after one night in hosp which seems a bit quick to me...

Member
Posts: 9
Registered: ‎27-02-2018

Re: February Chemo Starters 2018

Hi all
Side effects definitely get worse the further along you go don't they? Sorry to hear people are suffering with sore nails and breathlessness. I have been a bit quiet as have really struggled with SE s this cycle. I am so pleased to say that I have finished chemo and hope I never have to do that again!! Had 4cycles of TC and the fourth T completely wiped me out..

I too have been breathless on movement, sometimes just whilst sitting so bad last week was referred into hospital with a suspected PE. Thankfully scans were clear and they have just said it takes time for chemo effects to wear off. I have such terrible fluid retention in ankles legs and arms weirdly!! Anyone else suffer with that? Anyone got any miracle cures?

Have been getting gel nails done fortnightly to protect nails but sadly mine have mostly gone black and have dark ridges in some.

Must focus on the positive though and I still have some hair at front and sides. Nails are still attached and I am upright and head is off pillow! Am hoping radiotherapy is kinder to me !

Thinking of you all hope everyone has a Good week and all side effects ease up. It is such a challenging time but we are doing so well.
Take care
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Ps I’m glad for you that you didn’t have implant my surgeon was convinced it hadn’t spread and so put implant in but after radio may need removing and it was the most painful thing I’d gone through so not looking forward to it x
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi woodie
I had brca testing came back neg which I’m pleased as have 2 young girls 12 and 16 but they said when they 30 to get referred anyway let’s hope by then they can do more for triple neg patients as it’s pants isn’t it and such a worry . The problem with TN is it’s fast growing so perhaps you’re earlier scan it hadn’t developed. I was called early at 47 (they are thinking of bringing the age forward for mammograms) and so shouldn’t be having mine til Dec this year which would have be a disaster and I believe it would have spread else where . I found it by chance lying in bed so was really lucky .
The brca results take about 6 weeks hope it goes ok have you got kids? Let me know how u get on x
Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

Sorry no reconstruction- was told that would have to be delayed due to needing radiotherapy. I go for genetic counselling on Monday in Manchester - one of my questions will be do I need the left breast removing? I don’t trust mammograms - had a clear one in september 2017 & by end of December 2017 has invasive tumour which had spread to lymph nodes..
Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

My surgeon offered me surgery first as my Breast tumour was so small (turned out to be just 7 mm and neither she or I could feel it) but shot straight to my armpit nodes which was the lump I felt - she was planning chemo first but when node biopsy came back positive said research showed no difference in outcome - felt good to me to “chop it out” - had surgery on 1st Feb & started chemo on 21st Feb. Been off work since my diagnosis - I work at the hospital, know the surgeon and she said my job was too stressful to works and she wanted me as stress free and healthy as possible to go the the treatment. Go to half pay in July and know my boss is desperate to get me back to work - thinking or taking leave in October and phased return in November. Having said that after doing unhealthy late night Dr Googling scaring myself about my prognosis I told him today I need to consider all my options!
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi woodie
Well perhaps if they not concerned that’s a good sign but it is a worry for you.
You sound very similar to me did you have reconstruction? I wished I hadn’t as I too have to have radio but haven’t a clue how much yet and whether I’ll have axilla clearance but obviously I now run the risk of capsular contraction. It’s nice to hear you had op first as I’ve read a lot that TNBC ladies tend to have chemo first you are the first I know to have surgery first so it’s nice to hear.
Hope you get on ok next week . I’m really tired today been sleep for 3 hrs today . As they say listen to your body good luck next week x have you been off work long ? I’ve gern off since 5th Dec they said it would probably be a year . I hit half pay next month 😢 and not able to get any financial support x
Member
Posts: 17
Registered: ‎20-01-2018

Re: February Chemo Starters 2018

Thanks for the replies made me feel better - it is when I’m walking upstairs & any hills that I really notice it - will mention again to my Onc next Tuesday before next dose but did last time & she just dismissed it really. Yes had my surgery on 1st Feb - mastectomy & axillary clearance - will do 3 weeks of rads in July to armpit, clavicle, chest wall & mammary node area then pray for the best and back to work at some point!
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi woodie67
I to am TNBC I’ve had right Mast and sentinel node biopsy and implant and then they discovered it had spread to my lymph nodes so I’ve had FEC Now on 2nd T yesterday was there 6 hrs am very tired I too get breathless it’s a side effect of T sadly but I would ring triage to get it checked out . Have you had surgery ? Hope your 2nd T is a bit better I also have sore nail beds that are lifting . But fatigue is a he worse thing .

Hi Mojan you asked if my fingers are sore they are not it’s just my nails hope yours are better xx