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Cress
Member
since
11-04-2015
127
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17
Hugs
31-03-2016
04:28
1 Hug
Hi Sharon, Got home on Good Friday after a 20 day stay in hospital. Got drained a huge amount and then had a Pleurex drain put in. The District Nurse comes around to drain it every few days. Last week she got 850ml but today only 35ml. Hopefully, it will taper off to nothing and I can have it removed in a few months. I was bed bound for 16 days and have lost normal use of my legs at the moment. Saw my onc yesterday and bloods are stable, so he has put me on Tamoxifen for a month to give me a break from the horrid Abraxane and build myself up. All a bit weird as I walked into hospital on the 6th and was still driving up to then. Weigh 48kg now so have lots of eating to do... I will have bloods every week and will see my onc again in 3 weeks, so will let you know how I get on. Thanks again for your help. Best wishes, Julia x
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06-03-2016
10:40
Hello Scratch, Sorry to be a pest, but what were your symptons just before you were drained? I'm now in great pain and I don't know whether to go to hospital today. As much as I don't want to go on Mother's Day, I think that I need something stronger than Naproxen. I'm very wobbly on my legs and getting lots of pain in the ribs, as the fluid is now crowding all my organs. Also, one last question and then I'll shut up - did your mets get worse around the time of your ascites? All that I've read about malignant ascites indicates that it is a signal of progression. Once again, thanks for your help, as it seems that there aren't many liver mets people active on the boards at the moment. Best wishes, Julia x
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05-03-2016
03:03
Hello Dee, Last Nov my onc was on holiday and I saw a Registrar. I had an extremely painful fungating nipple and had been asked to keep a photo journal of it on my phone by my onc, so I had pics from start of September. The deterioration was obvious, but this Registrar said it wasn't infected because it didn't smell (nevermind the fact that it was now sticking to my camisole)!!! He also said it 'didn't look that bad'. When I saw my onc in Dec. he immediately said it was fungating and got me to see a TV nurse for dressings. To shorten this tale, I was so angry that I complained to my then trial research nurse, and she said that we have a right to ask to be seen by the same person every time. Obvs, this doesn't always work if they're on holiday but at least it gives us some continuity. Marirose is right, everyone responds differently. Letrozole was my first treatment and I was on it for 4 mos before progression was discovered. If you feel a drug isn't working, try to ask for an early review. Time is everything for us, and we shouldn't be left on something ineffective. I was so glad to hear you challenging your treatment. Most of my care has been excellent, but when something doesn't seem right, I speak up - it's our live at stake. Take care, Julia x
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05-03-2016
01:16
Hi Sharon, Thanks for all the info. Wow... a total of 11 litres across your two visits! I'm quite slim too (about 54kg) and I'm now 58. So painful I can barely sit up because stomach is in the way and rock hard. I can hardly wait until Wed. Had my 3rd Abraxane yesterday and was given some new meds - Zarzio (Filgastim) injections that I have to give myself for 8 days starting tomorrow. Dreading stabbing myself in huge sore abdomen. Hope they get it on first go, as I hate hospital stays. Thanks for all your help. Best wishes, Julia x
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04-03-2016
07:45
When I was first dx last March, I was going to have EC chemo until they found the liver mets on an MRI. I was at Guy's and the nurse doing the Biobank data collection said that it's always good to have a hefty dose of Vit D and some Zinc as well, when having chemo. Julia x
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03-03-2016
08:52
Hi Sharon, Do you think the overkill of antibiotics could have brought it on? I'm now booked in for ultrasound and drainage next Wed. I've been having a lot of pain yesterday and today and hope that I can wait that long. Did you get sore ribs as well? I'm supposed to be having the 3rd Abraxane tomorrow and don't know if I can cope with that much spinning into the orbit! Yes, I'm as big as I was when I had my daughter 16 yrs ago! Did your swelling come on really quickly? I've put on 8lbs in 5 days and am wearing my jeans under my stomach... next thing you know, I'll be showing a builders bum! My sister was drained twice and she has assured me that it is fairly painless. Please let us know about your success with Docetaxel. Best wishes, Julia x
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03-03-2016
08:26
Hi All, I agree with Julie D - it's so nice to see familiar names returning to the boards. I also get v worried when we don't hear from some people who've been quite active in the past. After the tragic and untimely departure of Wolfie and Belinda, it starts me thinking of others we haven't seen in a while. Has anyone heard from Mitch23 or Springsummer? I seem to remember that they were both being cared for at the Marsden. Thanks, Julia x
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03-03-2016
12:35
1 Hug
Hello Karen, I've come to the conclusion that the best way to approach a scan is: If it's bad news, at least I know and can get a new treatment that might work better, rather than wasting time taking something useless... and If it's good news - Yay!!!!! Either way, you're better knowing sooner rather than later. Best wishes, Julia x
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01-03-2016
09:26
1 Hug
I was in hospital from Saturday to Monday with neutropenia and was treated for suspected sepsis (doubtful). (No, I wasn't doing mystery shopping for Jeremy Hunt!). I was given 5 x bags of IV antibotics and huge 1l. bags of rehydration fluid. When I went in, I was urinating normally and my abdomen looked reasonably flat. I emerged on Monday only able to wee an eggcup full and with a massively bloated stomach. I have been in pain and can't really eat... generally miserable. Anyone experience similar? Help! Best, Julia x
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22-02-2016
03:35
Hi Sharon, Snap! I had 2 x Paclitaxel and had an allergic meltdown on the 3rd one, so I had to switch to Abraxane (another bastard taxane chemo like Docetaxel). I was performance status zero (the best) a few months ago, and now I find myself holding onto things to not loose my balance, my nails have more rings than a 100 year old tree, a peach has more hair and my flat is a tip! Like you, I'm not sure if it's working, but hope springs eternal and I'm trying to push on through this low phase. Try to enjoy your thriller tonight and go along tomorrow with an open mind. Maybe a dose adjustment might help. After 4 sessions, they should be able to give you an indication if it's making an impact. I start asking early about next options. I like to go away and do some research of my own, to see what might be the most tolerable. Good luck for your results and let us know how you get on. Best wishes, Julia x
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19-02-2016
10:35
1 Hug
Hello Marirose, Glad to see that BCC has made you a Community Champion - you deserve a bit of recognition for the huge support you give all of us! Julia xxx
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15-02-2016
10:38
1 Hug
Hello Debra, Just saw your post about starting Capecitabine. I've not been on Cape yet (they were offering it as an option before I went on the AZD trial), but many on the Forum have had great success with it for quite a long time. You've probably started it by now, but I think the main se's are the hand and foot problems. Again, there are lots of tips and advice on here for how to cope with those. I'm on IV chemo (Abraxane), and it's a tough one, but I had to have something quite agressive to deal with the nasty progression in December when I was off treatment. I've had to have lots of time off work recently, and have only started going in for a few hours at a time. I have to contact my employers' insurers, which I'm not looking forward to... I know how you feel - after my first dose of Abraxane, I was beached on the sofa for six days! Please let us know how you're getting on. Best wishes, Julia x
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15-02-2016
10:06
1 Hug
Hello London1, I'm in a similar situation, and I would love to know what luck you have with your request to have your primary removed. I was dx double whammy last March with Invasive Lobular Grade 2 and liver mets. My liver function scores were absolutely insane in December, but I can honestly say that I've never been bothered by my liver mets. I wish that I could say the same for my primary! It measured 4.7cm in the upper outer quadrant when biopsied last March and now I don't even know the size (over 10cm), just that it has taken over my whole rather small breast. In December, I was put on weekly Paclitaxel but had a severe reaction and was moved to Abraxane every 3 weeks. I keep hoping that it will shrink everthing, so I might have a chance at having my primary removed. Please keep in touch. Sarah Louise, All I can say is HOW DARE HE (your oncologist)!!!. It's been said many times on the Forum, but still remains true - none of us come with a date stamp. Like most of the women responding to your post, I have never been given a 'prognosis' - unless one is at deaths' door, it's not helpful nor acurate. The standard today is to be told that SBC is not curable but that there are many treatments and more in the pipeline. If many of us (even those with the dreaded visceral mets), have not been told to start choosing the music for our funeral, then you certainly shouldn't have been given that silly prognosis. Rant over - it just makes me really cross when someone new posts with such an unenlightened tale. Best wishes, Julia x
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13-02-2016
04:03
Hi Sue, If you want to take a bath, get a Limbo sleeve to go over your line. You can't submerge it, but it will keep your dressing etc really dry, if you hold your arm out of the bath (on the side or a shelf etc.). I like having a good relaxing soak and a shower just doesn't cut it! My line was put in under local anesthetic and was guided in place by ultasound. I then had an x-ray to check it was in position and that was it. How's the Gem/Carbo? It it your first iv chemo? The Abraxane is my first and it's not exactly a walk in the park, but if it works, I can't complain. Best wishes, Julia x
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13-02-2016
03:49
Thanks DBNO, I will definately try the frequent trimming when the time comes. I have had fine but thick straight hair all my life, so will feel quite strange with tight curls (not that it really matters in the greater scheme of things...). Cheers, Julia x
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13-02-2016
12:45
Hi Scratch, How have your nails been on Docetaxel? Do you wear ice mitts and boots? My onc suggested cold packs, as he doesn't want my nails to lift and get infected. I'm on Abraxane but I understand that any taxanes tend to do horrid things to nails. Thanks, Julia x
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13-02-2016
12:28
Hello Miller, I'm having my first chemo too (not due to finish until early May), but I'd be curious to know what others have experienced. I'm on Abraxane and it's also made my nails go yellow, like I smoke 40 roll ups a day! yuk... Julia x
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08-02-2016
03:19
Wow Dawn, that's amazing. Do you think that you could post a few pics of your Bonsai? My partner has trained loads of trees over the years. Have you got anything at RHS Wisley at the moment? Julia x ps: I've got two cats, one black DSH (Don), a chocolate BSH (Coco) and a black Pug (Duke).
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25-01-2016
11:10
Hello All, I had my first Abraxane (without Avastin) on Friday, due to a severe reaction to my 3rd dose of Taxol. You're right in thinking that it's the same drug, but my onc (who's also a researcher), said that the se's are worse on Abraxane, in particular, the neuropathy. That's certainly what I'm finding. I'm on one big dose every three weeks and it's really hit me! I have painful nails and numb fingers, nose bleeds, huge fatigue, nausea and problems swallowing. I'm just hoping that I feel better next week, so I can get a bit of respite and build myself up for the next hit. My two weeks on Taxol were a walk in the park by comparison. Hope the results on Abraxane are worth it. Please let us know of any good scans... that is always cheering! Best, Julia x
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23-01-2016
11:48
Hi Jan, Yes, it was pretty bad! I felt like I was having a heart attack. I wish that I could have continued on weekly Paclitaxel, as I had only had 2 out of the 18 weeks, but I got the impression it was working. My onc said that if I tried it again, the reaction could be much worse, so it wasn't worth the risk. I didn't have steroid tablets, but I did have a steroid injection and an antihistamine before the infusion started. My oncologist said that it's not uncommon for it to happen on the third session. The nab version is given in a bigger dose over a half hour (instead of an hour). I'm having it once every three weeks, but I still have to go in every week to have my line cleaned. It's better known by it's brand name - Abraxane. Basically, it's Paclitaxel, but instead of being mixed with and delivered in Castor oil, it's suspended in albumen. It's supposed to be more gentle, but can cause much worse neuropathy than the normal Paclitaxel! Do let me know how you get on with scans and shrinkage, etc. Hope both our treatments manage to do the trick. Best wishes, Julia x
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