Piclataxol Pixies - come and join in!

[sarah66]

Hi all , finally got a referral back to breast surgeon as team have decided a mastectomy would be next best step as breast lump has not shrunk in last 3 months on taxol , lung lump still shrunk down. So awaiting appoint with him, might discuss a double mastectomy as I am a 40 e chest and don't fancy being that lopsided, will chat about options.
Don't know if I fancy reconstruction , anyone got any experiences they can share?
Also got the and manager coming to discuss options re work they have bought up ill health retirement so will see what they have to say , big decisions ahead!

Hope everyone is ok

sarah x

[sarah66]

Hi millykins01' was your retirement on ill health or just early retirement? , I am wondering how I can manage to work with the treatments etc i have children 11 and 17 , and like you say time is precious and I want to be there for them as much as possible. Beings a "pensioner" sounds appealing!

Take care all
sarah x

[millykins01]

Snap - I am 47 as well - we are just too young to be facing all this but hey ho -
I would think NHS has a good pension scheme too? - I have to say my department have been wonderful & it was presented very much as my choice but it was a no brainer. I got a generous lump sum & reasonable annual pension as it is calculated at full amounts as if I had worked til 65. may be worth looking in to yours????? - as I say I was very happy to take that option as I only worked part time anyway & just couldn't see me being able to go back with the treatment I am on so better to bite the bullet & accept it. with my DLA & I also get child tax credits for my daughter as she is 7 I am on more than when I worked but of course the extra DLA pays for all the travel to hosp, parking, heating & all my supplements etc. now I can relax & just enjoy my time especially in my new house - we have a much bigger garden & even a greenhouse so i can fully embrace my new role as a "pensioner" hee hee. A pipe & slippers next methinks!!!!!!

[sarah66]

Hi millykins01' hope the move goes well , I know the feeling about being on chemo indefinitely, I was told by onc that I quill have to go back on chemo at some point even if taxol is working at present, I may have chemo break but I suppose it will start p again at some point.
i am considering early retirement , am 47 now and have worded for nhs for about 25 years, my current place of work closed down whilst I have been off sick so I am currently at risk and they have to find me a job, difficult when I don,t know what I can manage yet ! I suppose they will be glad to get rid of me if they can , one way or other lol . Just have to wait for scan and results, fingers crossed for us all


sarah x

[millykins01]

Hi sarah
I don't know if you are already claiming anything but I claim high rate disability living allowance (DLA) - changed to personal independence payment PIP and if you get the high rate mobility & care that is about 550 per month plus contribution based ESA worth about 440 per month after sick pay ran out & if you have paid NI before you get that for a year then it goes to income based which is basically means tested like income support.

definitely talk to someone - macmillian are very good for helping you fill out forms etc to make sure you get what you are entitled to or give them a call - you have to be so careful how you do it to make sure you get what you are clearly entitled to. or also if you have a local hospice they have people there who can help as well - they are so used to all this they know what to put down - we tend to underplay things sometimes - It has made a huge difference to us getting the money we need. I have now taken early retirement from work as the deal from local authority was too good not to and means I can spend all my time with my daughter & husband rather than at work.
they prob don't like doing ops if they can helkp it cos then you have to recover etc but I trust they will do what is best.
I have now changed my chemo after 7 months on paclitaxel & avastin as it stopped working so I am now on Gemcarbo - much harsher as I get a big whammy dose of carboplatin once every 3 weeks which floors me frankly! I have sort of resigned myself to being on some form of chemo indefinitely now for as long as it works. thankfully my lungs remained clear after paclitaxel shrank it all it is just in my lymphs & bones now so it did do it's stuff just sadly stopped.
Hope everyone is doing OK - I am hopefully finally moving house in 3 weeks time - can't wait. have lots of help & packers etc so I shall sit on the sofa & direct all the activity

[sarah66]

Hi everyone, I am still on the taxol on cycle 6 now , then act scan on 19 th, apparently the lung one has shrunk well but breast one not as much as they would have liked so oncologist is going to discuss scan results with team and maybe mastectodidactic breast lump has not shown signs of shrinkage? ? Wait and see. They have been saying no to an op for so long now I had put it out of my head and was thinking of going back to work , but this had thrown me now as if I have an op it will probably take me over 12 months off sick and I will not get paid!
anyone had to claim benefits in this situation, what can I claim, will have to contact CAB

good luck pinkylou for your op x
hi millykins01 hope you are ok x
best wishes to all xx

[gail5]

geordiex good luck with herceptin. Hoping your fluid settles down soon. Good to hear taxol has worked for you too.

[geordiex]

hi gail saw onc today she said the the fluid on my legs will just be re absorbed ,have been taken off taxol due to side effects but it did a good job ,will be on herceptin only now ,good luck with taxol and hope your home soon x

[gail5]

Hi Louise, hope you can get your recurrence sorted out. Sorry i'm still catching up on this thread.
Lymphangitis in the lung, from what I understand of my onc's explanation, means there are cancer cells in the lymph glands of the lung producing fluid so allowing less air through the lung. So it makes you breathless. It can be eased by steroids, low level opiates and oxygen. Obviously hoping the chemo will kick some butt and give me more time to control things.

[gail5]

Geordiex, I have swelling in both legs,but worse in left leg. Ultrasound just shows fluid so onc is reducing steroids to see if it helps. Having to hope weather lasts a bit longer as sandles and slippers only footwear that fitsmore just now.

[pinkylou]

Hi Gail , what is lympthangitis ? X

[gail5]

I've now officially added taxol to my list of chemos with first infusion today. Onc visited to confirm radiologist reviewed last week's ct scan and agrees evidence of lymphangitis in right lung, but justifies missing it as thinks not too advanced yet. Still have some fluid build up on left lung following pleurodesis but hard to drain now as formed into pockets, and extensive skin lesions restrict efficiency of left lung. Have home oxygen now so hoping to get home early next week if make good progress with physio.

[Morwenna]

Geordiex,

Swelling of the feet and ankles is a known common side effect of Taxol. In my case it is worse on my right ankle I think due to my having had a clot in that leg. I have a treatment today, then one more to go!!!

If you notice swelling in one leg more than the other for no obvious cause, especially if it is going up the leg, you should definitely get it checked out.

[geordiex]

🙂

[geordiex]

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[geordiex]

has anyone had leg swelling with taxol please ?

[Cm19]

I have had 10 Taxols and 3 avastins. I started with weekly taxol and tumor marker was going up althought circulating tumor cells were coming down. Pain levels had diminished significantly from extensive mets to pelvis. I even managed to ride a horse for the first time in my life which would have been impossible prior to the chemo.
My Oncologist decided to add the avastin and changed me to 3 weeks on 1 off with the avastin on weeks 1 & 3. I had to skip one on the first cycle due to shortness of breath and bleeding (nose and anal fissure).......Since then I have had a full 3 week cycle and am on my week off. MY voice is so weak it's also more like a whisper as mentioned earlier in the board by Sarah66. My pain has elevated again and not sure if that is the cancer, the treatment or the neupogen to boost WBC. This week I felt that 'run over by a bus' feeling similar to that of my first line chemo 4 years ago.
I am in the USA and being treated at MD Anderson which is supposedly the best there is and yet my Dr has made mistakes and oversights over the past 18 months. I am trying to get a change of Dr which is stressful during this disease and treatment.
I have scans at the end of this week and then will see a physician next week - just don't know which one yet!

[pinkylou]

Thanks angel falls , hope you are ok too. Sorry to hear about your breathing problems Gail, hopefully that will be sorted out soon. Sarah , I did 12 weeks taxol and 18 weeks epiribicin. I have been back at work for three and half months , I felt crap at the beginning but I feel I have more focus now, I am having to have this reoccurence removed as nothing works on it , do that's the plan Monday 1st July. I will let you know , I am taking holiday for the operation as I don't want any more sickness against me,

louise x

[gail5]

Having been admitted to hospital over the weekend with breathing problems, I've had some fluid drained from right pleura this afternoon. Had pleurodesis on left side a few weeks ago with some fluid increasing but too hard to drain as it's settled in pockets. On oxygen, steroids and liquid oromorph. Had test to see if eligible for oxygen at home, although might not qualify as breathing better since fluid drained. Currently on letrozole but not been long enough to work yet. Agreed with onc to try weekly taxol in hope it'll work more quickly. Unusually she's happy to combine with letrozole. Chemo unit busy but hoping to fast track me as an inpatient.

[sarah66]

Hi all , having 6. Cycles of taxol 3 weeks on and 1 off, not too bad at moment except for nails are rising off nail bed 4 of them so getting through plasters. Due to have another scan end July /aug to check on things , if shrinkage she may suggest a chemo break, if not continue on chemo, no operation whilst on chemo apparently. ? How long I can go on having taxol. Some numbness in fingers and toes but manageable, Still I off work at the moment but will need to consider going back soon either on roof chemo.

good luck with the op Louise and speedy recovery

Sarah xx

[Angelfalls]

Good news that your recurrence is operable, Louise - all helps get one step closer to NED! Good luck with the op. I'll be thinking of you and keeping everything crossed. xx

[pinkylou]

How are you doing Sarah ? I am having an operation next week to remove reoccurence , nervous.

Louise

[geordiex]

does anyone who is having or had weekly paclitaxel for secondaries to the liver know what thier dose is/was in mg please xx

[geordiex]

unfortunately my nails started lifting before I bought nail envy has anyone else lost nails ?

[geordiex]

I bought some nail envy from opi off QVC which is very good ,makes nails very strong ,mine are lifting at the nail bed ,but is keeping them from getting worse.

[geordiex]

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[geordiex]

hi I had number 5 of 15 weekly taxol and this week feel absolutely shattered ,wobbly legs etc anyone else ever feel like this ,sometimes I have maybe a day when I feel this way but into my 3rd day now ,and also the dry nose issue ,blood etc (lovely)I'm also having herceptin both for liver secondaries ,oh and the mouth is on going .

[Morwenna]

Hi Sarah,

I think the only thing to suggest for nails that are lifting is to apply bandaids or tape so they don't catch on things. Also keep a close eye for any signs of infection. Some of mine appeared to be lifting at the tips, but I've been watching them and they don't seem to be getting any worse at present. I have just had Taxol #7 of 12 weekly doses.

I am also very careful opening cartons and shampoo bottles etc where you might put pressure on the nails. I seem to have red rings for each of the four Adriamycin/Chlorophosphamide I had, but since they are growing out, the newer part of the nail looks a more normal colour. Got some funny shapes going on too! How are your toenails? Mine are a bit sore at times, but all still there ..... 🙂

Oh, and I'm also on daily Heparin (Lovenox) injections since march 5th when I was diagnosed with deep vein thrombosis in my thigh/leg and clots to my lungs as well, after my third treatment of A/C. I also have a high platelet condition, which was previously being observed but not treated, but saw my hematologist last week, and he wants me to stay on the injections for 6 months and then he will see if I need long term meds to lower my risk of recurrent clotting problems! 😞

A nurse told me that risk of dvt is increased x7 in cancer patients generally, then further risks are surgeries (x2 for me), and chemotherapy.

[sarah66]

Hi all hope everyone is ok. I am still having taxol weekly for 3 weeks then one off, plan to have 2nmore cycles then ct scan and if shrinkage still shown maybe a chemo break. I am having problems with nails on hands at moment seem to be lifting off the nail bed anyone got any suggestions to help don't really want to lose my nails painful !!
sarah x

[sarah66]

Hi Louise on my latest scan it showed up some small blood clots on the lungs
? Caused by chemo ? Not sure so I am on heparin injections daily for 3 to 6 months.
Got to have a couple more cycles of taxol then scan, will have to think about work then if all ok

good luck with your treatment and work louise make sure you get rest
sarah xx

[pinkylou]

Hi Sara , what are the injections for ? I am back at work , quite tired. Just moved to 3 days a week. Still got 2 more chemos to go. And then scan
louise

[sarah66]

Have started injections, feel strange doing it myself, need to start some exercise , so tired though, managing housework etc and small outings but such a pain to put wig on then i get hot flushes and feel too hot, oh for some motivation!!! nees to consider going back to work at some point too.

Best wishes to all
Sarah x

[pinkylou]

That's brilliant news Sarah xxxxx

[millykins01]

That's fab news sarah. wonderful to hear
XXXXXXXXXXXXXXXXXXXXXXXXX

[sarah66]

hi had ct scan results today lung tumour has shrunk completely, breast one shrunk a bit, but scan shows some blood clots at base of lungs ? Cause, waiting to see if onc wants me to have blood thinning injections, plan to carry on with taxol just had number 10 , ok but do feel like running out of the chemo suite once they have plugged me in on Hickman line !!!!!

best wishes all
sarah x

[sarah66]

Hi all voice has still return unread I am getting worried that this is something to do with the taxol or tha aavast in that was stopped. Anyone else had the same or similar. ? I can only talk in a whisper and that is apparently not good for your vocal cords. Have to wit and see I suppose. Fed up now xx
sarah x

[salsa_babe]

Hi Millykin01
Thank you for your response. Your message was helpful and I may just mention it to my Onc next week when we meet up. I would hate to think it is money why I am only ALLOWED 18. I just had Paclitaxel on its own though other ladies I met at the unit sometimes had that and something else. I think you are right about hormone treatment, as I am positive and there seem to be other products to try. When I got dx last year Jan they started me on Letrozole but come Sept they said the spot on my liver and lung had increased and so to start chemo which has just shrunk the spot to some extent and now they have put me on Arimidex as they said the Letrozole was not working though I felt fine and was looking forward to go back to work. As I have said I finished Chemo mid Feb this year and now getting use to Arimidex and Ibandronic Acid for my bones, so happy to have IA in tablet form as it means I can now try and get me back and not visit the chemo unit.
Funny how one gets use to a routine, now that chemo is over and its been just over a month on tablets for BC I can feel myself slipping away fromt he hospital and that feels scary. After a year of constant visits, I don't know what to do with myself as I am still not ready for work, just got to get the arthritis back on track.

Hope you have had a good day today, not much sun where I am in London but yesterday was lovely and so hopeful. Have a blessed week and I look forward to our little chats here.

Kind regards

PS: Can't wait to go back to salsa dancing... my aim is to get to Cuba where it all started hee hee

[millykins01]

hi Salsababe
I hadn't heard of people having more but when I spoke to some of the nurses they said it does happen when it is working well & side effects aren't causing too much damage which in my case they son't seem to be. I am at Royal Surrey in Guildford. I know my oncologist said he is often able to prescribe things other people can't in other PCTs so don't know if that has anything to do with it - I am on avastin as well. what might be the difference is that I am triple negative so there is no hormone treatment available to me so chemo & avastin mught be my only hope to keep things under control??????

Sarah - hope you get your CT results soon. waiting is always hard. I have been pl;agued by virals & seem to be going from one cold to another - I ended up in hospital 2 weeks ago & kept in for 24 hours but nutrophils were fine at 5.2 so they reckoned it was just a virus & I still had more chemo on the friday as I felt OK to have it but I am back with another cold again this week. still I don't want to miss chemo for that as long as I am still functioning which I am. we even managed to sell our house & may have found another one in the 2 weeks of easter hols so I am not letting any of this stop me from doing stuff but I know I am lucky not to be suffering too much from the side effetcs.

[pinkylou]

Hi Sarah , I have had 14 epirubicens , number 15 Tomorrow , shown improvement. It's quite sicky , I found taxol more none achy but this one makes me feel more hot and sicky. Another chest x ray Monday , how is your reoccurence in your breast , my arm pit is really hurting and I really wish they would just remove it.

Hugs louise

[sarah66]

hi i have had 3 cycles so far of 3 weekly , one week off, have another cycle of 3 on one off to do , was supposed to have one today but still not feeling brilliant so she suggested putting it off this week.


How are you getting on ?
Sarah x

[pinkylou]

Hi Sara , how many sessions of taxol did you have and how many were planned ? X

[sarah66]

Hi all, saw onocologist but no results of the ct scan yet, got to wait until next monday now. no taxol today as still suffering effects of viral iinfection ,voice has not returned yet ,getting worried now

Sarah xx

[salsa_babe]

Hi Millykins01

I have just read your message with interest. Like you I had 18 sessions of taxol without much side effect apart from usual hair loss all over and nail discolouration (they did not fall out and seem STRONGER than before). I had chemo to shrink a spot on lung and liver which after 2 scans one in Dec and then Feb. Feb 15 was my last chemo and like you on 23rd Feb told that I had responded well it had decreased in size. Can't believe I said it but I did, I asked couldn't I CONTINUE having more chemo in the hope of shrinking it all together and she said no, as usually one has 18 SESSIONS and some don't make it that far which is true some of the ladies in my unit were suffering and that to continue could have the ADVERSE EFFECT, so I have now finished chemo and now taking Ibandronic Acid along with Arimidex. Part of me would have liked to continue to see how much more the chemo could help me and so was INTERESTED TO SEE that you have continued with at least another 3 more sessions!!! I am under Guys in London and secondary came along after 8 years and in my thigh!! ANYONE OUT there have any thoughts... What hospital are you under?
Like you, have my holiday booked; off to Spain in July as friends are waiting for me to join them in the summer fair and large amounts of sangria and paella to be had.

WISHING YOU ALL WELL

[pinkylou]

Hi Sarah , good luck with the oncologist , let me know xxx.

[Morwenna]

Hi Taxol ladies 🙂

I just wanted to share with you this link that I found with a gorgeous girl giving advice about hair loss and eyelash/brow tips.

http://eyelineher.blogspot.ca/?m=1
Enjoy! 🙂

[sarah66]

Hi jill , i have recurrance of triple negative bc, and lung mets had ct scan last fri so will let you know if the taxol is working when i see onc, fingers crossed. I too suffered with a sore mouth ask for mouthwas difflam which has a numbing effect, eat drink pineapple, i am sure there are lots of advice re sore mouths on here. Hope yours improves soon,


sarahx

[notbreastfrien]

Hi fello Taxol Ladies, Just had my 3rd Taxol on Thursday feel ok on it but keep gettin a really sore mouth which is not good when trying to eat, had to give up on cold cap now working so headed to hairdresser today and told kids mummy going for new hair do and came back with wig on, they dont seem to notice its a wig. I seem to be losing hair really fast with this drug is that normal?? what type of tumours do you ladies have grade hormone status etc and how do you finf Taxol works with it??? so scared its not going to work, my original diagnosis was 2009 12mm grade 2 tumour node negative came back marck in liver bone and lung so confused as how with negative nodes but need to deal with it

Jill xxx

[salsa_babe]

Hi All, I am a first timer to this site and have found the reads very interesting and would just like to add. I am 56 Second Timer after 8 years clear (whatever that means) it was a shock last year (Jan 2012 when what I thought was a trapped nerve in my left thigh) was told that I had secondary BC. Heck how does one pick one self up of the floor, my GP was shocked but am grateful that he was consistent in sending me for various tests and after a process of elimination it was found. Well Feb 15 2013 finished 18 sessions of paclitaxol, I will tell it like it is, I was scared especially as I was due to be Matron of Honour at niece's wedding in NY. My chemo unit were fab and allowed me to have a week off for the event. I must admit I made it down the "aisle". I still had hair after six sessions though it was getting thinner but was glad to be at wedding (I only have 2 nieces and the other one is married). On returning continued with the remaining 12 sessions without much incidents but all body hair gone, though I will say I was told my hands and feet would cause problems and I met ladies in the Unit that were struggling but by week 13 started to feel sensitive but managed to get to the end. I have just started Amrimedex HT as last year the zoladex tablet form did not work as a spot on my liver looked like it had increased in size HENCE the chemo and happy to say that the chemo managed to shrink it somewhat. Been on Ameridex a month now and no indidents to report, and fingertips and toes are coming back to normal and as a WOMAN of COLOUR black toe and finger nails are not attractive to the younger member of the family, the 3 year old said the other day, aunty your hands are dirty - upsetting for me. I was interested to read "markers" have gone down an expression I have not heard but will ask about this when I next see my Onc. Eyebrows and eyelashes which were stripped are now coming back, head hair is back fully covered but grey, am hoping I will get my afro soon and then stop using my wig. I am fatigued and have mood swings. Not sure how to go forward, I know I have done it before but this time.... well I feel let down; does anyone feel like that...its worst now the weather is changing and I will have to socialise not at work and only go out for hospital visits as I feel freaky without eyebrows and eyelashes... what to say what to do.... mmmm

[housebythewate]

I have just joined, and also after 10 sessions of Taxol my cancer markers are down to 44 which is just great. I will read through your comments and hopefully find lots of advice. Thank you Margaret