Dear Sue and Lisa,
Been busy reading through your posts and catching up.
I started another round of chemo, Marsden trial, myself last week (IBC, skin mets) and am hoping for good results.
It's just so stubborn.
I really hope that Lisa gets some good news soon, my goodness she truly deserves a break. Also hope the next treatment plan can sort the pain she is in. Constant pain is just so tiring apart from anything else.
Just want to add my best wishes to you both and to let you know I am thinking of you.
Funny you should say about taste Angela because this last couple of days she has gone off a few things like tea .. she says tastes funny etc. She was crying with pain in her back, hip and shoulders yesterday and is taking lots of strong painkillers. She has told loads of medics but no one seems too bothered .. but I told her yesterday she can't go on like this. She starts her taxol/avastin on Weds and will see nurse for blood tests on tuesday so she will definitely mention it then thats if she can go that long. The pain is really bad .. she says she wouldn't mind if she knew that it wasn't anything serious.
Are you feeling Ok now?
Love Sue xx
Hi Zotam and Lisa
I had my whole brain rads at the same time as lisa, and I was diagnosed at the same time and same age. Just wanted to say that the steroids affected my knees and i was rushed in to A & E with excruiating pain in my knees, but a diclofenac jag sorted me but worryingly my whole body blew up. Can I ask has lisa lost her sense of taste and saliva etc this was one of the worst things that I found and as the weeks go on the side effects differ almost daily. I hope Lisa gets some good news and that whatever treatment she gets will help her to feel better. My thoughts are with you both.
Hi Sue and Lisa
I do hope that Lisa is having a better day today and you too Sue, you must both be exhausted. Thanks for asking, I am fine, see consultant on Tuesday coming to find out more about this next op. I did an interview this morning with Oxford University they are researching at the moment into DCIS so I hope that has helped. I just feel this huge urge to do some good to thank the professionals and everyone on this site who have been so supportive.
The important people here are you and Lisa, not a day goes by without me wondering how Lisa is and wishing her well and thinking about how you are coping too. It will do you both the world of good to see your rellies from Oz, how lovely is that, have a great reunion and many hugs.
Sending much love, Carole xxx
Thanks everyone. I have read too that Avastin thins the blood, hence wounds not healing properly and yet they have told Lisa today that she must have daily injections of Heprin .. and something else which is like Heprin ...as they have noticed some tiny blood clots in her lungs. She was told not to worry ( easier said than done) as everyone who has had chemo gets them and they are hardly noticeable. She also has to take a 300mg Aspirin on Thursday morning before the procedure to have the portacath fitted. Not sure if these injections will be all the time she is having Avastin or whether its just the 12 weeks that she is having Taxol. She will ask on Thursday. We are worried that it might encourage the nose bleeds. She finds it hard to take in all the info at once especially when, like this morning, she had 2 phone calls straight off from different medics. When we have face to face meetings I am always there because she can't take it all in. She might be like this because of the brain op only 6 weeks ago or it might be because of stress. Anyway she was asked did she want a nurse in every day to give the blood thinning injection or would she like to be shown how to do it herself or a family member could be shown. She opted to do it herself or for me to do it as she doesn't want a nurse in every day.
So for next week she will have blood test done on Tuesday and then the Taxol and Avastin on Weds. It was also mentioned that she might have a biopsy done next week on the lump in her back but again this seems confusing because I thought they didn't like leaving a wound when on Avastin. I am sure it will all become clear later. We will sort out some questions to ask when she sees Dr on Thursday. She was told that she would be given a sedative and although the procedure only takes half an hour he wants her there for several hours to have everything explained and because of the sedative.
Its going to be a busy time this next week or so plus we have relations from Oz coming for weekend. I told Lisa that i too will have no hair by end of week with all the hair pulling that I am doing!
I just wondered if any of you had any experience of blood thinning injections when on Paclitaxol and Avastin.
Love Sue xx
HI Sue and Lisa
Sorry to hear that there has been yet another problem but as Jacquie says, it is good that you are starting on the chemo. I had 18 sessions of Taxol and 12 of Avastin last year, and tolerated it pretty well - apart from the nose bleeds (like Anne!), problems with my nails and some neuropathy in my toes and fingers. The nose bleeds are I believe due to Avastin thinning the blood. My team weren't over-concerned so long as the bleeding wasn't too heavy.
Hi Sue and Lisa,
So sorry to hear about the latest in your saga - it's not fair! I'm glad they're talking about a portacath and this top quality new treatment. So glad there's no quibbles about who's paying, and they're just doing what Lisa needs.
Can I echo what others have said - for all our sakes you MUST keep posting, and don't forget to look after yourself as well, Lisa.
Love to you both
Lovely to hear from you Carole .. how are you doing? Yes its turning out to be a very long haul for Lisa with no let up .. the breast is still Ok and looks really good .. if only the cancer had stopped there. Lisa is still in bed this morning .. stiffness in her back and very lethargic ( prob after effects of WBR as we have heard it can go on for ages) She will get up and move around shortly and get her back moving.
Anne ....Pleased that the nurse answered about your nose bleeds as I was going to ask about them with Lisa about to start on Tax and Avastin. Is this a sign of the high blood pressure that is a side effect of Avastin?
Hi Mel .. thanks for that.
Thankyou Tara for your concern about the nose bleeds. I have mentioned them to the nurse who comes to do my chemo (at home)and the oncology breast care nurse at the hospital and they both seemed to think these were classic symptoms of taxol and Avastin so I'm hoping it's ok. I tend to get a more heavy nosebleed first thing in the morning and last thing at night and scabs which give way to blood during the day but it has been every day now for a fortnight. It just feels like I've got a constant cold but it's blood and not mucus!
I will mention it again tomorrow.
hi Sue and Lisa
A while since I have been online now and have been thinking of you both and hoping that when I came on here that there was good news following the brain rads. I am so so sorry to hear of the further problems and have absolute admiration for both of you for your strength and support for each other and then to take the time to keep us all updated too. If ever a woman should get some respite from this then it is surely Lisa, Lisa you are a wonderfully brave young woman and I continue to keep you in my thoughts and prayers. Lets hope that there is improvement very soon.
love and hugs Carole xx
I just wanted to pick up on the daily nose bleeds you mention you are having. I was wondering if you had contacted either you oncologist or chemotherapy team about them, if not then I think it is important that you given them a call to discuss the nose bleeds rather then waiting for your next appointment. They may be an annoying side-effect, but it is best to get it checked out.
Clinical Nurse Specialist
hi sue and lisa
I'd like to retract what I said above about other site as it was done for security, I don't think it was meant to offend so keep writing sue and lisa and all the best x
Hi Sue and Lisa
Just thought I would write and say I'm sorry about your scan results.
I can't believe people sometimes, re trouble with other site, they obviously got nothing to worry about, we not all the like that, keep writing sue and lisa
all the best
Love Mel x
Hello forum members
Can I ask that you stop talking about what happens on other discussion forums on this thread and can we continue the great work of supporting each other.
Good luck for PET scan Ann .. will have everything crossed for you.
Shame Mills didn't get her wish with Avastin Debs .. look forward to her posting sometime.
You made me laugh Fizbiz!! What a good idea!
Thank you all for answering.
Love Sue & Lisa xxx ( I will get her to write on here one day.
Hi zotams! ... or should i say zotam1 and zotam2
I am so sorry that you had the awful experience on the other site and can't believe that anyone could be so PETTY in your situation - it beggars belief!!!
I think you should make up a name that you know is HORRIBLE (in a disguised way!) and congratulate the management on doing such a wonderful job! (I know sarcasm is the lowest form of wit but that is what this has reduced me to!) I cannot believe that in your circumstances anyone could be so bl**dy nitpikcy!!! what stupid twits! somewhat unusualy i am lost for words ..... I cannot tell you how angry this has made me .....i wish we were allowed to swear
When i say "horrible in a disguised way" I mean something like
SOB - could be "stupid old bag"
JUCFOA - jobsworth united club F O A
I cannot believe I just wrote that!!!!!!
..... you can imagine some more polite ones I'm sure
at least it could be fun making some up !
I am so very sorry that you've been put through all this and please rest assured that we all love you to bits!!!!
KEEP WITH US!!!!!!
Love FizBix >>>>>>
Sorry to hear the bad news about the lump. Glad you got the avastin though. These bank holidays are such a pain this time of year.
Sorry about the wait for the portacath but think it will be a better option than my hickman line anyway!! At least you don't have the infection worry then.
Lisa sounds such a remarkable lady with such a wonderful supportive mum. Look after yourself as well as Lisa though won't you.
All the best
Have read all your posts on Lisa's progress and though I have never posted to you I keep Lisa and you very much in my thoughts. I have been on weekly Taxol and fortnightly Avastin since March and about to have my 8th taxol this week and then my 5th Avastin next week before having my first PET scan on 9th May since treatment for my secondaries in my lungs and lymphatic system began. I won't know until the PET scan results on 12th May what effect the treatment has had but so far I really have been tolerating the treatment well and have kept working (14hours a week) throughout. I get nosebleeds every day now (but perfectly copable with - just have to have tissues at all times!!)and have had aches and pains,ulcers and tiredness but nothing really bad. I have been told that weekly taxol is much better tolerated than every 3 weeks. I am very lucky that my husband has BUPA through his work which is why I can get Avastin - well the proof that it is good will be if my scan shows improvement which I'm hoping it will!
Wishing Lisa and your family all the very best and keep us posted. You sound a most wonderfully supportive mother!
re Mills no her trust did not give in but I know when she sees this she willpost to you. I spoke on the phone to her last week and she sounded much better. Thank goodness.
Tell Lisa the avastin works really quickly so to stay calm, I have been lucky and not had side effects the taxol has made me really tired so I dont do much but I am happy to give in and let it do its magic.
Meant to ask Debs .. did Mills get the Avastin? She started WBR the same time as Lisa.
If you are reading this Mills just wanted to say hello .. how are you doing?
Also Hemly how is the WBR going?
Lisa just had a phone call from a Dr to say that port-a -cath to be fitted Thursday. She was told it might be tomorrow ready for chemo & Avastin on Friday but looks as if thats now not happening. Then its Bank Holiday weekend again. Always seems to be Bank Holiday when Lisa needs anything done! The Onc was trying to get things moving fast because of the aggressive nature of Lisa's cancer. If you remember the smaller brain tumour doubled in size from 1.5cm to 3cm in 3 weeks so she wants the chemo asap. She is now a bit disappointed.
Anyway just wanted to ask about Mills and also Hemly
Debs thanks so much for that. We have just come in and Lisa has just read your letter. What hope you have given her ... thank you so much. I am so sorry to hear about the problems you have had getting Avastin and that you have suffered because of the fight ( your liver situation i mean) .. thats why we were so shocked when the Onc rang the other afternoon and said she could have it. As I said she does have insurance through work .. its AXA PPP and apparently they aren't always helpful according to the different consultants but either they have approved it or the Onc thinks the local trust will fund it. We know its last ditch attempt because the hormone treatment isn't working and Lisa's cancer (IBC) is so aggressive but Lisa told him the other afternoon that she will try ANYTHING to give her more time. I was reading an article the other day where it said that in a few years they will be able to control cancer like they do diabetes etc. Thats all you ask at the moment isn't it .. just to be able to control it. Lisa & I will join any campaign if necessary to get Avastin for everyone if it really works. You must be over the moon with a 50% reduction Debs. I will let you know about Lisa.
As I write I can hear her vacuuming up the dog hair in the other room .. naughty girl .. better go!
Love Sue x
Hi Sue and Lisa
sorry to hear your news I was wondering how it went on Friday and when you didnt post feared the worse.
Re Avastin I am one of the people who kicked up a fuss I had been asking my onc about it for nearly 2 years was told last May if we could raise 60k I could be treated on nhs on a co payment basis so we put ou house on the market and began to save like mad. In December was told capecetabine had stopped working so I asked how many treatments 10k would buy me I was told co payment had been stopped by government. The following weekend I read in the times about Mills she was going through the same thing as me so I contacted the press and my campaign began. On 29th Jan after a scan my tumour spread in liver was at danger level and my onc went to the trust in Cornwall and said he wanted to treat me asap with avastin and taxol. After all the press coverage the trust gave in and I was given the treatment on nhs. After 6 taxol and only 4 avastin I had 50 per cent reduction.
Do not let the other people on the forums upset you as you know on this site we all try and help none of us want to be in this situation but the help and support we can give and receive from other is invaluable.
Take care and good luck.
Hi Sue - I have read your posts for weeks now - and although I have never replied you and Lisa have been constantly in my thoughts. I am really sorry the scans didn't give better news but I am sure the treatment the onc. is suggesting will be first class. I am on avastin and taxotere (through private health insurance) it's do-able - normal chemo/drug related list of hundreds of side effects (i appear to be getting the minor ones (but all of them).
I am sorry Lisa has had problems on the other site - I am sure this can be resolved but agrre with Jane this is the last thing you need now.
Take Care - thinking of you both.
Thanks for your latest update. I'm so sorry to hear Lisa's latest news. There a few women on avastin on this site..its a new drug mainly used in trials but some private insurers and PCTs are using it. I hope one of them will see your post and respond.
I'm sorry Lisa had difficulty with the bcpals site. I use that site too and have asked one of the moderators to check out your post. Neither of you need such hassle right now.
very best wishes
Dear Sue and Lisa
It's just so unfair that you are going through all of this and like you said as soon as one treatment is finished, something else shows up. Thank you so much for coming online to update everybody because we all worry about each other. I really hope Lisa doesn't suffer too much with the new chemotherapy and that it sorts her out and I'm also really sorry to hear of the discomfort Lisa is in.
Thinking of you all.
Been a busy few days but i know a lot of you are waiting for news of Lisa. Not good in that the lump she thought was 'knotty' muscle on her back (where LD muscles was taken around to her breast) is not muscle but in fact cancer again! Lisa distraught as you can imagine. The brain seems Ok .. nothing new as he put it ... and a bit early to see exactly what the rads has done. The back pain he thinks is due to the high steroids she was on. The Onc says that steroids can due awful things to bones and joints. BUT the MRI to her spine showed a slight thickening to the dura in lower back .. he says they aren't sure what it is but will keep an eye on it. She is still getting horrible pain in her lower back and hip and is quite depressed by it. Other than that he said there was no cancer showing in any other organs. His worry being that the zoladex and letrazole aren't having full effect on the tumour spread. The blood test showed that oestrogen levels are really low so they are working in that respect but the cancer is still spreading. As you can imagine it was a very intense meeting on Friday. He said that she wa snot to get too down as he had a few other things up his sleeve. 3 hours later we had a phone call to say that she could go onto Avastin and Paclitaxol. Avastin every 2 weeks for a year and Paclitaxol every week for 12 weeks. She has some private insurance through work so I assume this is how she is getting it. I don't know for sure as we only had a short phone call. Is anyone else on Avastin and if so how is it doing and how did you get it?
She has to have a port-a-cath fitted and also a needle biopsy of lump to be 100% its the same cancer etc. we are awaiting phone calls from the hospital because treatment needs to start as soon as pos. Lisa always seems to get cancer spread after rads and that why I once asked the question about rads making it spread.
So we are all feeling really down at the moment. Poor Lisa seems to get no let up as soon as one treatment finishes there is more cancer. Its only 6 weeks since her major brain surgery. She is feeling very depressed this morning due to news and to her back ache but i thought i must write as I know some of you lovely people wait to hear her story. We know she is unusual as she is often told this at hospital.
I read once that after certain treatments your type of cancer can change. Lisa was ER+ but PR- when first diagnosed. Hence being put immediately on zoladex. Hope I have written that correctly.
There is another reason why I haven't written for a few days. Its to do with Lisa trying to post on the BCPals site which i was totally unaware of as I was out when she did it but she was cut off after one posting as she was accused of being me. I take it some members to both sites recognized the name. It really upset her and at first said she didn't want me posting on here anymore because she thought that every time people saw the name zotam they would think it was 'that woman' pretending to be someone else. I do understand their caution as the site is only for people with breast cancer but I would like to point out to those people who thought they were 'dobbing me in' that I am at least intelligent enough to have used another username if I had been doing anything underhanded. Lisa, bless her, didn't think and just used the same name as its part of our email address. She says she won't write on any breast cancer site again but has given me permission now to do this because she has read all the answers I have had from you lovely ladies and we know how you care. Also we hope that Lisa's story can be of help.
Sorry this is so long. I will make the next one shorter with an update.
Love Sue ... and Lisa xxx