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Pain Control

I have reached a point with my pain meds where I can't take any more 'cos I sleep too much and as I nod off have the strangest experiences which must be some sort of drug induced hallucinating! My Macmillan doctor has been trying different things but t...

Posted by dawnhc on Mon Aug 23, 2010 11:46 pm with 19 comments

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Hi Dawn Sorry to hear that Ketamine didn't work for you, fingers crossed for Gaberpentin. I started on Gaberpentin a couple of weeks ago and have had no side effects apart from mild constipation. I am on 100mg x 3 per day. I wish I could say it has ...

BoneyL, Wed Sep 08, 2010 11:41 am
PARP Inhibitors for Triple negs?

Hi All Im looking for any info on PARP inhibitiors as a treatment for tnbc. I was dx in jan and had a mx and chemo but Ive had a recurrence (skin mets) immediately after completing chemo (Fec-tax). Ive just had a massive op to remove the affected skin ...

Posted by Gingerbud on Mon Sep 06, 2010 5:16 pm with 11 comments

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Thanks Josie xxx Good luck today at the clinic Tina xxx

Emma-30, Wed Sep 08, 2010 11:24 am
Herceptin - treatment time

Hi all, I was told at my latest treatment session that in future my herceptin would be iven to me over a 30 minute period instead of the usual 1hr 30 mins. I'm told that this is fairly common throughout the country. Anyone else know about this. I c...

Posted by celeste on Mon Sep 06, 2010 2:02 pm with 6 comments

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Same as Julie: first two slow, the rest over 30 mins. I've had to have a break due to a heart reaction, so if I start up again I guess I'll have to go through tge loading doses again. So annoying. Next heart scan in two weeks...

Flora29, Tue Sep 07, 2010 6:01 am
New drug breakthrough-triple negative

Just watching the news and they seem quite excited about a new drug that will stop one of the worse strains of bc in its tracks. Lets hope they get these drugs in clinics as soon as possible as the triple negative form really does need some encouragem...

Posted by AnnB on Fri Sep 03, 2010 1:44 pm with 4 comments

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Thanks for that Emma. Fingers crossed the drug is developed sooner rather than later so we can all benefit. Tina x

Gingerbud, Mon Sep 06, 2010 8:02 pm
Going onto Vinoralbine

Hi I have just got the results of the CT scan after 3 months of Capcetibine/Lapatinib and, as I suspected, it hasn't worked for me. My skin, lung and bone mets are all very slightly worse so my Oncologist is putting me on Vinoralbine. Having had pro...

Posted by BoneyL on Thu Aug 26, 2010 6:42 pm with 14 comments

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Hi Tiny You are definately not alone on the sleeping front. One day after last infusion I just could not get up and slept the whole day and night. I did feel good the next day. I don't think I notice any difference in tumours yet - I have one under...

bydand, Mon Sep 06, 2010 8:15 am
Sudden change in breast shape

I was diagnosed with bone and liver mets in 2008. For the past four months I've been on Exemestane, and feeling really great. However, I've suddenly got a lot of breast pain, and noticed a dramatic change in breast shape on the side of the primary tu...

Posted by kittybuttoon on Wed Sep 01, 2010 5:12 pm with 3 comments

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Hi kittybuttoon I'm sorry to read you're having a worrying time at the moment. If you would like to talk things through with someone please do give the BCC helpline a call on 0808 800 6000. Here you can share your concerns with a trained member of s...

Sam BCC, Thu Sep 02, 2010 11:04 am
Oramorph and constipation

Good afternoon everyone, hope you are all coping with your treatments and enjoying your day. I still havent seen oncologist as Im still under the neurosurgeon and so dont know what treatments they will offer me yet and in what order. My original dx w...

Posted by AnnB on Sat Jul 10, 2010 12:47 pm with 10 comments

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Excellent!! There has to be some pleasure derived from this awful journey, and if a bar of your favorite choc eases the path, so be it! Best wishes, Jax

jaxw, Thu Sep 02, 2010 10:09 am
Oh so its Zoladex !!!!!

I have been living with secondary bc in my bones and lung for over 2 years now. My treatment is zoladex, femara, herceptin and zometa. I delayed my treatment for one week to go on holiday (as I have done before). However after my usual zometa and her...

Posted by juliet66 on Fri Aug 20, 2010 9:52 am with 4 comments

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A bit late here - just seen this post. I only have herceptin and don't get hot flushes with it. I can even wear polo neck sweaters now! All the best with your side effects - I know it is miserable, as if we didn't have enough to put up with. Blondie

blondie, Mon Aug 30, 2010 10:11 am
MUGA scan results

We all know what bad news does to us - and I am no different from anyone else! I am supposed to have MUGA scans every 6mths. Someone slipped up and didn't book it so my last one was in January. 4 weeks ago I went for my herceptin & zometa and the scrip...

Posted by dawnhc on Thu Aug 26, 2010 12:56 am with 11 comments

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Hi Dawn It was the Registrar that told me that there was research re MUGA and that problems were in the initial stages or not at all (my Onc was not so specific). I have treatment on Tuesday (CT Scan Wed) so I will ask around and see if I can get a re...

blondie, Sun Aug 29, 2010 11:16 pm
Scan showed progression, help needed please

Hi everyone I haven’t posted for sometime although I do pop in sometimes to see what’s happening. I’m looking for some advice before I see my onc first thing on Tuesday. I was diagnosed with bone secondaries in April last year in my lumbar spine. Unfo...

Posted by fuzzyface42 on Sun Aug 22, 2010 11:18 pm with 5 comments

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Hi Lesley - bumping this for you. i do hope things are better today. Lynn x.

lynvee, Tue Aug 24, 2010 10:34 pm
pain around ribs

hi Just need someone to help ease my mind a bit, for eighteen months I have had a enlarged lympe node ,when I first went to the breast clinic about a small lump I found in my masectomy scar,it was scaned and the doctor said it was an infection in my ly...

Posted by zelah52 on Fri Jul 23, 2010 10:05 am with 8 comments

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Hi Zelah So sorry to hear you're having trouble getting good care, support & appropriate treatment -- More than 10 years after my lumpectomy & axillary clearance (19 nodes taken, 4 with cancer in them), I suddenly developed lymphoedema in my affecte...

Marilf, Sun Aug 22, 2010 9:49 am
Hodgkins Disease in 1981, 4th cancer just diagnosed

I have posted this for new user Sue Jo, Facilitator I was diagnosed with Hodgkins Disease in 1981. Which was treated with Surgery and Radiotherapy, thankfully I made a full recovery. In 2005, Ductal Carcinoma In Situ was diagnosed in my left breast, ...

Posted by Jo BCC on Sun Dec 13, 2009 2:40 pm with 4 comments

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Hi, I had Hodgkins Lymphoma and was also treated with Radiation in 1987. Subsequently I had Chemotherapy and Splenectomy in 1990. I Then had DCIS and LCIS (found AFTER surgery) discovered and bilateral mastectomies at the end of 2006. I feel exhaust...

yessie, Sat Aug 14, 2010 12:17 pm
enlarged spleen? pain in side

Hi all have got secondaries liver and bones, I mentioned to my Onc a pain in my left side just below ribs, she said on my scan my spleen was enlarged and this happens when it tries to help the liver. just checking as the pain has gone from copable stit...

Posted by CurlyC on Sat Aug 07, 2010 10:17 am with 2 comments

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this sounds exactly like the pain i have had today, feels like a very severe stitch just under left rib cage, i also have secondaries to lungs, extensive liver, bones and pleura. Pain has been excruating today comes and goes. Have an appointment with...

Maximise, Fri Aug 13, 2010 10:16 pm
Herceptin side effects - help

Has anyone else experienced agonizing scalp pain and acne on the scalp, face and neck following her?? My scalp hurts so badly I can't lay on my pillow. The spots are septic and burst if squeezed. It's disgusting. Also had stomach upset two days now is ...

Posted by signet on Sun Aug 08, 2010 12:59 am with 13 comments

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Hi dawn, I have flucloxacillin antibiotics xxxxx seem to be helping but they cause diahorrhoea too!! I think your right about the two drugs together being a fairly lethal combination. Xx so hope I manage the outbreak next time by applying the tea tree...

signet, Thu Aug 12, 2010 1:09 am
Bone Mets question

Hi I am new to the forum and wish I had found it 9 years ago when I was diagnosed with BC - really helpful and informative... I have been fine for 9 years after having surgery, chemo, radiotherapy, tamoxifen and arimidex, but lately have been getting...

Posted by surreylady on Wed Aug 11, 2010 3:42 pm with 4 comments

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Thank you Teacherjy, Yes you are right, anxiety does make the pain worse! - thanks for your advice - much appreciated and wishing you well....

surreylady, Wed Aug 11, 2010 6:26 pm
Breathing difficulties

we have very recently discovered my grandmother of 73 has secondary mets to the lung and lymph nodes. although the medical practitioners have been aware of this for some months, there appears to have been some breakdown in communication and we were onl...

Posted by t_ruby on Fri Jul 30, 2010 9:43 pm with 7 comments

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so it's been quite a hectic few days. My Grandmothers breathing was very shallow friday night and so we called an ambulance. she was rushed to hospital and has been admitted with pneumonia. hopefully will be discharged on monday. its quite a surprise...

t_ruby, Sat Aug 07, 2010 11:22 pm
cyberknife

Hi, I've recently read something about cyberknife on the Internet. I think it says that it can be used for liver mets. Has anyone had any experiences with it or know anything about it? Just curious. xx

Posted by m1yu on Fri Jul 30, 2010 4:52 pm with 12 comments

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Susie-I appreciate that you wanted to ask the question. I just hope that your onc was sufficiently on the ball to warn you not to raise your hopes (this was the import of my "cruel" comment). Since you respond well to chemo, then that is good, and so a...

ElaineD, Thu Aug 05, 2010 6:13 pm
taxol and gemcitabine

Have felt strangely unlike my normal self and breathless. Had appointment yesterday for results and have been told I have fluid on lung which needs draining, and multiple progression so Faslodex has not worked. Given option of chemo or tablets, being ...

Posted by almas on Sat Jul 31, 2010 4:10 pm with 3 comments

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thank you both will take advice onboard, have chest drainage booked for Thursday. Appointment with onc on Tuesday and chemo Thursday next week. Will try cold cap if its uncomfortable will just get another wig. Have appointment for Monday for that. Ha...

almas, Tue Aug 03, 2010 5:24 pm
spinal mets cant stand pain any more

Hi everyone I have my first appointment coming up with oncologist on wednesday since being diagnosed with spinal mets but I am screaming an agony with the pain. My GP has now put be on 2 x 300 zomorph per day (I presume this is over 24 hours and have...

Posted by AnnB on Sun Jul 25, 2010 11:12 pm with 19 comments

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Hi Ann, So glad to hear that you've made some progress with the 'professionals' and pleased to hear that you are feeling a little bit better today. I agree with everyone else tho that if you have any more symptoms don't wait. Get right back on to them....

Jodie1, Tue Jul 27, 2010 8:49 am
Mixing NHS and private treatment

Since my initial dx under the NHS in Oct 09 I have had all my treatment privately, paid for by my insurance company, AXA PPP. I have bone mets, have finished chemo and rads, and am currently having IV Zometa and Avastin every 3 weeks. I am due to sta...

Posted by finty on Fri Jul 23, 2010 2:27 pm with 14 comments

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Thanks Linda - I'm pleased that you have managed to meld the two systems together so well. I obviously need to have a chat with my onc and see if we can manage something similar. Access to drugs is a very real issue - I certainly would not have been ...

finty, Mon Jul 26, 2010 1:31 pm
Weekly Taxol / Steroids

Hi, My Mum has had 1 'lot' of treatments [3 on, 1 off]. We've noticed a trend... whenever she has the treatment with the steroids she feels great, super duper and able to pretty much do most things - as she has lung mets this is simply... getting to t...

Posted by gingerbear on Mon Jun 28, 2010 10:21 pm with 10 comments

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oh gingerbear, i'm sorry to hear you've lost your mum, i just can't imagine. i think she must be so proud of you. i hope you got some help from this forum, and will continue to do so - there is a friends and family thread lol hx

hannah11, Tue Jul 20, 2010 6:26 pm
Zoladex

I'm on a break from chemo (liver and bone mets) and due to have my first zoladex injection next week. Can anyone give me any info on this i.e possible side effects etc.? Thanks Alison

Posted by Tawny on Thu Jul 15, 2010 11:22 pm with 7 comments

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Hi Jill I am just heading up to bed as I have worked a really long day and am particularly brain dead Tonight, I will PM you Tomorrow, so look out for that! Take care and I'm glad my experience has helped you! Nicola

Nicky65, Fri Jul 16, 2010 10:19 pm
Please sign this petition to allow better access to Tyverb

Ladies & any gents here, For any Her2+ sufferers you may know how difficult it is to get access to the drug Tyverb (Lapatinib), please sign the petition below to try to push the government to at least allow access to the drug if it's partly self funde...

Posted by gingerbear on Sat Apr 03, 2010 8:47 am with 23 comments

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Sorry I was too late to sign. I am on Lapatinib now but having to pay private. We are looking into ways to get funding but not much luck at the moment. We havent had our first bill yet, but we could be looking at £2000 for 21 days treatmant. And thats...

julie59, Fri Jul 16, 2010 6:32 pm
vinoralbine

hi all,im due to start iv vinoralbine in 3 weeks,has anyone got any tips and did you lose your hair.xx

Posted by janet1956 on Thu Jul 08, 2010 6:45 pm with 4 comments

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hi fliss,good to know your mam is feeling better now,i start on the 27th but its introvenus through my veins.i will let you know how i get on .love and best wishes to all.xx

janet1956, Thu Jul 15, 2010 9:45 pm
Vinorelbine (Navelbine®)

My mum has been offered Vinorelbine (Navelbine®)as her next chemo option after spread to her lungs and a tumor obstructing her throat and causing difficults swallowing. Has anybody else had any experiences of this chemo and can tell me their experience...

Posted by Support4Mum on Mon Jul 05, 2010 2:54 pm with 6 comments

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Mum took first dose on Tuesday evening, spent that evening and yesterday in bed feeling terrible but then this moring suprised us all by getting up and going to work. Dad said she seemed much more like 'her' usual self. Local hospice are being really h...

Support4Mum, Thu Jul 15, 2010 8:16 pm

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