Hi Pinkylou - I just posted the link to this one on your other thread before I realised you’ve already found it.
I’d be interested to follow your experience in getting a second opinion on surgery. I have yet to have Mx as developed skin mets during treatment to shrink primary tumours and was given impression that surgery would be off the table now. but have since learned it’s not uncommon to go ahead with it. I would still be classed as inoperable but if chemo can shrink the tumours enough would still consider going ahead with this at a later date.
Thanks for your advice Leamongrove of course I don,t mind in fact its appreciaterd.
I don’t live around the London area and the trouble is the more people I speak to the more confused I get, why can’t they all agree. How am I supose to know what the right thing to do is when they disagree. I could go back to my surgeon who did my previous surgery, its at a different hospital but how would I feel then the next time I saw my oncologist. I was told 3 years ago after recurrence in lymph node it could’nt be cured just controlled and I’ve accepted that (what choice do I have).
I sometimes wonder if I had been given chemo in the past which was never even suggested I would be in this position now, although it does’nt help to go down the what if road does it.
Will keep popping the pills till I know for sure they are not working.
Thanks for your advice.
Janice, you wouldn’t have to change hospitals to get a second opinion -you can consult another specialist just for an opinion. I think if you could get a very high ranking Oncologist to say surgery would be beneficial for you, your Oncologist would defer, and offer surgery (because that’s the way the medical profession do things). It is very common for patients to ask for a second opinion, so your Consultant won’t get shirty. Good luck with whatever you do.
janice I had to fight for 2 years to get my affected lymph nodes removed.I was dx with secondaries from day one, but because the spread to the lymph nodes was a local recurrence it was classed as a primary.I had chemo,followed by rads followed by hormone therapy but all had little or no effect on the lymph nodes.I had a large swelling which reduced by about 25%, not really worth all the treatment thrown at it,surgery would have been a much better option.After getting a second opinion I did get surgery in April this year.I had 20 nodes removed and 17 had cancer in them.Even then surgeon was more keen than the oncs to go ahead,but in the end it was my decision.
It makes a big difference phycologically.It did take me a while to get over op(not helped because I also had a port fitted by GA the following month)but I am now feeling well and pleased I had the op .
Good luck
Hi everyone
I don’t post often but I follow posts daily
Just wanted to share some good news, I started cape in May for some small liver mets, I have had 5 cycles and yesterday got my scan results reported no mets to be seen in liver.
Whoop whoop I am enjoying this good news while it lasts
I am praying all of us xeloda girls have good results
Also I have found a great remedy for my sore and peeling fingers and feet it’s SNOW FIRE a solid emollient ointment for dry skin. My friend who is a market trader has used it for years and has certainly done the trick for me. I got it in boots but have also seen it on amazon, not expensive and worth a try.
Mandy xxx
Thanks Lucinda, we should’nt have to fight for these things should we, I have had to right from my first diagnoses which took 6 months from first GP visit until any action was taken, at least 2 years for my first recurrence to be taken seriously, lost count of how many times I expressed my concerns to various doctors/consultants, 18 months for a lump under my arm to be investagated, a plastic surgeon removed that at our local hospital under a local, needless to say it was cancer. After that I was given an open appointment with consultant, think they felt guilty in the end in fact my GP asked if I wanted to put in a complaint about the way my concerns were overlooked for so long.
I think I am just fed up with fighting now especially knowing that whatever I decide it can’t be cured.
Janice, I just want to say you’ve have had an appalling experience, but please don’t throw the towel in. Your condition may not be curable, but I truly believe, that you/we can influence how long we have if we take control. I know that many people prefer to rely on their doctors, and don’t want to battle to get what they require, but frankly at a time of stringent cuts, I think these people are a bit naive. As a life long socialist, I would like to believe that the NHS still provides everything patients require, but as a patient I know that just isn’t the case. They say the squeeky wheel gets the oil, and I believe that is true.
Just saw my onc today for review to see how I’m doing on Cap. I feel the good news is the skin mets haven’t gotten any worse since I started taking it, bad news is I don’t see any improvement. She said it was a slow-working drug and no further progress is fairly good at this stage. I’m still struggling with the nausea/acid reflux so she suggested taking both Omeprazole (the new drug this cycle) and Domperidone, which I stopped after 1st cycle. Feel I need to get this sorted out and have less tiredness before I could go back to work. Hands/feet not too bad yet but she expects them to get worse. Will see her again in 6 weeks.
Might have developed a mild lymphoedema. I’m pretty pissed off about that as it was about the only positive I took from being diagnosed with secondaries before I had surgery and when I had rads they avoided doing the axillary lymph nodes to help prevent this. It’s not much of a problem but I noticed it was a bit more difficult to remove my wedding and engagement ring and watch was a bit tight. Could be referred for physio if it gets worse.
Also brought up the subject of surgery. I got the impression she wasn’t overly enthusiastic but didn’t rule it out if I can get the skin mets under control. Would probably risk further spreading just now. In any case I haven’t made up my mind but wanted to check I still had the option.
Hi Gail, I have my appt on Monday and I was going to brooch the subject about surgery again. I have just finished today in fact 14 days of cap. I had a ct scan 2 weeks ago and I am having another chest x ray on Monday , I don’t really understand what the point I having all these scans so close together. As you said the cap is slow workinNoam I really going to know in 2 weeks whether it is working, like you say I too want to hk to work but you never know when is the right time to go back. What are the new drugs like ? Did you or anyone get any hair loss on cap ? I am just recovering from 5 months on taxol and my hair is just coming back , ?
Hi ladies i hope it isn’t slow working for my newly dx lung mets! I start on Tuesday also with rads…(a reduced amount) I have been reading all the tips…moisturers…etc…what sort of foods do need to get …any ideas please? My partner is also poorly …but has not had a diagnosis yet…so i won’t have anyone to just go out a get me a bit of what i ‘fancy’…
I am hoping i may be suitable for cyberknife…although they have said not! I must ask where these new nodes are…still in shock…sorry…
Dulcie xxxx
This is a copy of my post on the Triple Neg thread, and may be too late to be helpful for you,
Dulcie, I see from here but just so you have some info
Dulcie calling Dulcie!
Dulcie, Lemongrove has just posted on another thread about the Cyberknife charity
if only I can get the link right. breastcancercare.org.uk/comment/2045815#comment-2045815
Phew! Done it!
Lavender
xx
Pinkylou - I don’t really understand either what a chest x-ray is going to show that the ct scan didn’t. Best thing about Cap is you don’t usually lose your hair although it might thin a bit. I finished FEC-T in March so like you mine’s still growing back. I don’t think it’s thinned mine significantly but I have fine hair so hard to tell. Also being a tablet chemo don’t have problems finding a vein to take it if they’ve been damaged by previous chemos. Plus you don’t need to take steroids so can sleep. Main problems I’ve had are a bit of acid reflux, so always feel a bit yucky, tiredness (but this comes and goes) and am starting to find my fingers a bit sensitive, although haven’t got any blisters or peeling skin yet.
Dulcie - Try not to worry too much about my onc saying it was slow working. I have skin mets that were growing so fast I could see at least 1 new lesion every day and have had no obvious progression at all since the day I started Cap. She just thinks it’ll take longer before I see any actual improvement. So you may find it stops it in it’s tracks at least fairly quickly, even if it takes longer to shrink your mets. I eat pretty much the same food as before, just sometimes have less appetite especially in the 2nd week.
Had the hospital pharmacy on the phone concerned because the onc registrar had advised me to dissolve the Cap pills in orange juice when I was in the onc ward a few days ago, due to having problems swallowing them. They would prefer to give me smaller tablets and only dissolve the pills as a last resort. Reassured them that the problem was due to a muscle strain in neck so had problems eating and drinking, not specifically related to the tablets. Onc was a bit confused, possibly due to English not being his first language. Not having any trouble with them now.
Ann - you’re blood counts will probably drop a bit but not by as much as on most other chemos. Just try to avoid obviously sick people as much as you can.
Went to see oncologist on Tuesday following scan previous week and after 15 cycles have been taken off it. As I suspected its not working as well. I can feel my lump and as I thought its slightly bigger, am being put on Fulvestrant, its a hormone treatment given by injection, don’t know if anyone has any experience of this. Hoping to get a holiday in before I start, not much around though.
Its strange how I’ve always known when things are not right, no matter what the experts say, wish I could be wrong for once.
Janice, I’m doing things the other way round to you. I’ve had both Exemestane and Fulvestrant (after Femera/Letrozole stopped working), and neither worked for me. Consequently I’m now going onto Capacetibine. However do not be discouraged by this. The reason Fulvestrant didn’t work for me is that my cancer has changed it’s receptor status. They did a biopsy of a secondary node in my chest, and it showed my cancer has gone from being strongly oestrogen receptive to strongly Her2 receptive. Consequently I’m due to start Herceptin and Capacetibine/Xeloda on the 20th Sept (I will also be starting Zometa instead of oral Bondronat).
I personally found Fulvestrant very tolerable. It initially involves injections in each buttock on day 1, day 14 and day 28 (then it is once monthly). Some people say the injections are uncomfortable, but I didn’t find that to be the case at all ( I obviously felt the needle go in, but then nothing until the nurse said finished). The nurses inject it very slowly anyway. The only SE for me was slight queaziness at the beginning, and a stiff joints. Hope it works well for you.
Janice, by the way I totally agree that we know when something is amiss. When endocrine therapy failed for me, my Onc was sure it was just a case of endocrine resistance, but my instinct warned me that the receptor had changed, and when they did the biopsy my instinct was correct.
Question for others: The Prof has said I will be starting on 2000 mcg of Cap twice per day (I might have got that wrong, and it could be mg rather than mcg). Anyway, this sounds like quite a lot to me, so the question I would like to ask is,what dose are others on? I know it varies and depends on weight and body mass, but as I’m not particularly huge it sounds like a large dose (my height is 5ft 8’ and my weight is 10st 7lbs).
Thanks Lemongrove.
I have also had Tamoxifen and Letrozole neither of which worked for very long, not sure I am very confident about this next one but have to give it a go, seems more of the same.,
I took 1,450 Capitabine twice a day, I am 5’2" and about 8 and a half stone, I started on two weeks on one off for about 5 month I was struggling a bit so was changed to two on two off which I found better. I was told at the beginning that it would stop working at some point,
Sometimes I feel like burying my head in the sand I am fed up with this persistant little begger, seem to have been having treatment of one kind or another for ever, just want to feel well. Don’t supose I am the only one that feels like that.