Breast Cancer Now Forum

Had bone marrow biopsy end of sept and told mild infiltration. Haemoglobin low and platelets low. Tried to stabilise me with vinolrebin chemo for a month but all blood test results gradually got worse tired and breathless Had 2 more transfusions they perk me up for 3 weeks or so. Had another biopsy week ago and told now complete infiltration. No normal bone marrow cells. A shock and still reeling from it. Trying me with steroids. I'm not in bone pain just tired and short of breath. Having transfusion on 19th but this last week also picked up chest infection so antibiotics but coughing etc. been warned about bruising and bleeds like nose. Did have a couple in right eye for a couple of days. Have had achy arm and fronts of legs. Told this was the anaemia and take co codamol or oromorph to help. Steroids keep me awake hence the time but will probably sleep for a few more hours soon. Not a happy story. All devastated as time line is short. Feeling more calm and accepting but it's a b of a disease I feel so lucky and positive to have had 8 wonderful years with family since diagnosis and not in pain. Hope your results are not too bad. Haematologist told me they could treat with chemo even if platelets in single figures. But we are all different and am keeping fingers and toes crossed to hear you say results not too bad and here's a plan. Hope the waiting isn't too long. Often that's the worst part. Pamper yourself ... Hugs xx ... View more

Yes it had infiltrated. It was a bit of a long time till I got proper results as first report came in and the onc team couldn't understand all the terms. And figures. Eventually tracked down haematologist and was told a mild infiltration. Had 4 weeks on vinolrebin as it is a chemo with little effect on platelets in bone marrow but that hasn't worked. Platelets now down to 17 and am bruising and had couple of bleeds in one eye and numbness in left jaw and chin. Had head ct last week and no bleeds shown in brain or skull. But got second bone biopsy next week to see how much more it has gone into marrow. The biopsy is a bit uncomfortable but under mild sedation so takes time to sleep off the anaesthetic. Been put on higher dose of steroids and some feeling back in face. Cancer nodes in bones above ears which is pressing on facial nerve. Maybe back on chemo again as. Feel bright in myself no pain and quite active but all family and me, are worried as don't know what is coming next. Steroids keep me awake at night hence crazy time now. will read for bit and listen to my relaxation download. Should get a few more hours sleep then! Do let me know how things are for you if I can help. Lots of good vibes and thoughts for you. D ... View more

I have had bone marrow biopsy late sept and waiting for second one. Can I help? ... View more

Hello Janice. I haven't had much nausea with these tabs but do take domperidone as an anti sickness tab. I think there are quite a few different choices and one may suit you better than another. Metoclopromide doesn't help me at all. I felt worse. Suggest a chat with breast care nurse or onc for advice. Hoping you get help very quickly, ... View more

I hadn't read your previous postings when I replied so all I wrote is probably not relevant so please ignore my moanings! My initial biopsy was 8 years ago. I remember it hurting for a brief time but I can't remember what local anaesthetic or similar I had. Bets it's changed since that time ago. Be wishing you every good thoughts later this week. 😊 ... View more

Thank you for positive thoughts - only found out today I've got to have the dreaded steroid tablets as well for first day or so, each week.  Have enjoyed not taking them for 2+ years, in that I haven't had that wide awake boost in the evening and been able to sleep....Hope your friend didn't have any side effects.. ... View more

Hi to those who are still managing with options for bone marrow infiltration and hope your blood counts have improved   I have not had the diagnosis but had a bone marrow biopsy last week and will get results next week. I feel the chances of infiltartion are quite high so have ben gleaning info from these pages. I had a good 2 years on capecitabine but was feeling tired earlier this year and a chemo break was suggested. I didn't take it straight away but carried on and my haemolgobin and platelets levels kept on going down. I stopped the chemo end of  june and since then have had regular blood checks to see if the levels picked up on their own. they didn't so had a blood transfusion at beginning of Sept which perked me up a bit, and a ct scan but last weks blodd results show haemoglobin up a bit to 115 byt platelets still reducing , now at 57. Don't feel too tired and bit of pain in pelvis/legs but not a lot., but of course worried about getting reults and it being confirmed Any thoughts from anyone would be welcome ... View more

I have secondaries in liver and bone and had fec last spring, finished chemo beginning of aug, and was booked to go to the usa to see family in Dec. Had a horrendous time trying to get covered only 2 companies would even quote me. Insurecancer were the most kind with their questioning but said could not insure in the end cos of high costs of potential medical costs and 'getting me back to UK' if needed. Freespirit would insure me at an enormous premium of £1500 for 3 weeks. In the end we had to cancel the trip at very short notice as the cancer was coming back and I needed to start more chemo. Very lucky as had only just paid the premium for freespirit and they have a 2 week cooling off period. Also lucky as american airlines totally refunded our flights. Now coming to the end of chemo and want to fly to usa in June so will be going through the process again. I know costs are high but will search around cos the costs which might be incurred if I needed hospital treatment in the usa are enormous. will try Bromley - any others helped anyone for the us? Daisy ... View more

hi I was worst after tax3 as picked up a chest infection which took 2 lots of antibiotics to clear. I had to delay tax 4 for a week but am due for tax 5 next Thurs. Whether it was starting from a higher level after 4 cos of the antibitoics in my system, but it has been the easiest so far. I am slightly anxious about number 5 hitting me harder but keeping in mind that there is only one more after. Beginning to think about planning a get away break as it has been a long time! We are all different and I had nearly all the side effects with tax, but all (so far) were controlled with different tabs. Its the tiredness that hits so hard that is the worst. Keep on in there with only 4-5 weeks to go and think how far you/we have gone already. Rads are so much easier than chemo and do work. Love from Daisy ... View more

Hi Jennie Sorry to hear your news, but there are some good news stories and thanks to new chemos, there are a lot the onc's can try. I had suspicion of secondary liver mets only 18 months after my primary diagnosis in 2006 (grade 1, nothing in lymph nodes etc). 3 mets were found and I had them removed with liver resection in 2009. Unfortunately it spread to my bones and last year was back in my liver. It all been controlled by hormone treatment and radiotherapy since 2006, but in April last year I started on chemo (FEC - but could only have 2 of the 3 drugs cos my liver wasn't accepting the dose). The chemo stabilised it but then further probs with liver blood counts in Dec 2011 so had to start quite quickly on Docetaxol. Just had 3rd dose and feel a lot better. They had to reduce that dose as well but besides feeling tired and a rash which comes up in the first week post chemo, I'm coping with it pretty well. So from diagnosis of liver mets in May 2008, I feel I am having good treatment which is holding it at bay. Should be having mid chemo CT in next week or so to see how things are going. Do you have a secondary bc support group near you, as we have one and I find it invaluable to share and listen to others, some who have had liver mets longer than me, but are still doing well and being changed onto different chemos when things aren't stable any more. I am really encouraged listening and hearing about new treatments and yes we all have down days, but my thoughts are that you can go forward and enjoy life. I do enjoy and look forward to little treats in the near future, can be as simple as chatting to or seeing friends or family, going out walking specially if its sunny. This time of year doesn't help with it being grey and cold! Thinking of you and sending love and lots of good thoughts for you Daisy ... View more

Hi to all those just having 3rd session from Dec. thanks for all lovely comments to my post right back mid Dec when I had just had my first docetaxol. I was badly affected by the dose and in hosp atfter 5 days as my temp was up and my neutraphils were right down. Had 4 nights in hosp on antibiotics then asked to come out on 23rd Dec as had been up and walking around and didn't want to be coming out on Christmas Eve! With reluctance I was able to go home altho with a low netraphil count. Also had so much skin itching round my neck and shoulders - took a week to get under control. Onc. decided to lower dose for 2nd tax and itching was better but had a 12 hour bout of diarrhoae - not nice. Have felt really tired some days but no nausea. Hair fell out in second week (had kept quite a lot as had cold cap during FEC which worked pretty well), but now on wigs and hair scarks for round the house. Went to a Headstrong appt at local hosp and they were lovely with ideas and trying on lots of styles which you can order on line. Makes you fell better. Now just had number 3 - think i am half way through!! and waiting for scan appt. Having a dose of radiotherapy to my hip tomorrow as haven't been able to walk well as bone has got sclerotic from the mets. Hoping for some relief soon. Good to hear all your positive comments - no probs this time with taste - it was bad on FEc like others have said difficult even to drink water, had to drink squash which is not usually me! and dairy products, tried soya but didn't work for me but did get on with Lactofree milk in tea and cooking. Keep positive everyone, this chemo is hard but its going to help Love to you all Daisy ... View more

I have just started today on docetaxol. Am five years post initial dx but spread is in bones and liver. Feeling pretty low today as we were due to fly to USA today to be with family for 3 weeks and go on a cruise with them! Anyone out there been on this drug with any useful tips? ... View more

Any advice on tenderness of scalp? Have had 3 x EC and due 4th next week. Having cold cap and had very little hair loss till last thursday when I got tenderness of scalp and now whenever I touch my head/hair more falls out. Scalp is tender on top and a bit itcy - maybe loose hairs? Anyone got any ideas to help - is the hair loss rate going to get faster now, or maybe that's an unanswerable question, and there are lots of different experiences ... View more

I was lucky and didn't get any itching or soreness. The tattoo is on your front and they line it up then they get the machine to swing round under you to give the dose ... View more

Hi and I hope your radiotherapy is as successful as mine was last year. I have mets in spine liver and just diagnosed one in lung and am on chemo at the moment. My primary was 5 years ago but disease has been spreading since a year post diagnosis. I had five days radiotherapy for mets in base of spine this time last year and the relief from pain was very very quick, no side effects except one week post when I felt nauseous and dizzy and tired. Only lasted 1-2 days. Had radiotherapy (1 large dose) in Nov as new spot in thorax and again 1 week post, experienced the same - Now half way through FEC but can only have the EC cos of my liver, but again the pain in my spine has gone. Hope all goes well next week D ... View more