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MAHJfarn20
Member
since
08-05-2017
36
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4
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12-11-2017
12:43
Hi ladies, Sorry I haven't been in touch for quite a while. Lots of side effects and additional problems... Had to see gynae several times due to extremely heavy bleeding for over 12 weeks... further tests showed cysts, fibroids and thickened lining but he doesn't want to do invasive treatment until cancer treatment finished. This didn't help bloods...severely anaemia so had to agree to overnight stay in hospital and blood transfusions (or chemotherapy couldn't go ahead...levels were very much border line). Week later, district nurse wasn't happy about chest pain I was experiencing...go came, rang 999 and I had a ride in an ambulance.... diagnosed with blot clot in lung...so now on daily blood-thinning injections for 6 months. I thought the FEC was bad enough... but T is by far worse....seem to have all side effects going....nail pain, eye sight deteriorating, awful taste in mouth, ulcers, headaches, sickness, constipation for a few days after treatment followed by diarrhoea, piles (very sore due to diarrhoea.Sorry!)etc... And the bone pain is awful....worse and lasting longer than last time... on morphine liquid -takes a while to stop/ease the pain but then it returns after only 40 minutes. Up until this week I have always tried to be really positive but this week has been so bad...I have questioned whether I can actually continue like this...and now I have oral thrush! My last cycle is on 24th November( hopefully)... and I am dreading it! Radiotherapy to follow Also, read on another site that if you are on thinners for clot, they won't do reconstruction...Had left mastectomy before chem started so lopsided still... any one heard that on here?
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16-10-2017
06:35
I may have been a little too hasty. Not had a good night last night, or day today. Bald head is cold and clammy, shivers and bone pain in Lower legs. Not felt like eating...which is so unlike me-I love my food. Hoping tonight and tomorrow I start to improve. X
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14-10-2017
10:05
Hi. Firstly an update. No pain in chest and finding it much easier to breath. Heparin injections for 3-6 months but hey-ho. Not sure if I mentioned last time but I have my mri scan in November on right boon to check for changes in 'dodgy looking area' on last scan. Surgeon did bring up double mx last time we spoke. Had first cycle of T yesterday and the sickness hasn't been nearly as bad as with the FEC, thankfully. I had taken just 2 anti sickness pills...just in case but fingers crossed, I seem to be ok. Taste has gone off quicker though compared with the FEC. No other side effects at present. Hope everyone has a better week/cycle this this time. X
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10-10-2017
09:48
Hi Ladies. Yet another rubbish week. Woke up last Thursday with excruciating pain in left side of chest and difficulty breathing in...so painful. Tried relaxing and shallow breathing. Waited for district nurse to flush picc line. She was worried about temperature and called for go to visit. GP came and rang 999, querying pneumonia, leukocyte sepsis or pulmonary embolism. Spent rest of day and evening in hospital. Xrays and bloods done and to stop the tranexamic acid as it causes clots-after almost 12 weeks of bleeding, I stopped 6 days ago (Hooray). CT scan to be arranged. Sent home with more injections to thin blood... just in case. Had CT scan this morning. Confirmed it is a blood clot on my lung and told to inject heparin for 3 months. Just worried now that I will start bleeding again because I have stopped taking tranexamic acid.
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30-09-2017
08:59
Update. Only just managed to have 3rd cycle due to bloods. It did go ahead but I needed admitting overnight for blood transfusion.... obviously, the constant bleeding doesn't help. Monday and Tuesday am spent at the hospital. In small overnight ward with 3 other women-one of who did nothing but cough all night. Needless to say, I have now got a bit of a chestnut cough. Could d Mr see doc today-no appt even though I rang at 9.30am. Got one for Monday (usually only allowed to make appt in the morning for that day). Hoping it doesn't get any worse. Temp up and down-37.0 to 37.8 yesterday. Ended up back at gynae clinic and told to remain on the tranexamic acid until further notice. Also got appt to discuss next steps, the week before my final cycle starts, so I am hoping that there is light at the end of the tunnel. Worse week yet for feeling exhausted. Hope it's not as bad on the T cycles. On the plus side, I am half way through now... 😁
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22-09-2017
04:56
Hello again. Quick update-oncologist said I could go ahead with round 3 but that I would have to have a blood transfusion within next couple of days (have to stay in overnight) due to plummeting hb levels. This is due to having 10 weeks of bleeding. Had to see gynae and have ultrasound scan - results a week later-informed I have cyst, fibroids and thickened lining. He doesn't want to do any further invasive investigation due to possible infection until chem has finished in December so it looks like radiotherapy and further investigations in January...oh the joys! Feeling like it's never going to end. X
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21-09-2017
05:34
Hopefully, 3rd cycle of FEC tomorrow - half way mark. To be followed by 3 cycles of T. Are the side effects/nausea the same for T?
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13-09-2017
01:22
Hi ladies. I am having 6 cycles -3 x fec then 3x t. Had first cycle 11th August, followed by 2nd cycle on 1st Sept. I can stand blood and guts no problem but absolutely hate sickness. Needless to say, the nausea is my biggest problem. First cycle made me very sickly for about 6 days before I started to improve. Hair started falling around 17. Had signed up for Macmillan Brave the Shave but ended up having to have it shaved off a week earlier. Up to yet, raised around £700. Second cycle, sickness lasted round 8 days. Feeling much better now. Just hoping that the nausea doesn't last longer each time. I have bloods taken the day before I am due the chemo by the district nurse. She comes round every Thursday to flush and change my picc. Round 3 due on 22nd...I will be half way through then. Should finish in time for Christmas but then having radiotherapy afterwards (proba bly in January-lovely birthday present, eh?). Looking forward to my 'good week' now... x
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09-09-2017
09:26
Agreed...but it does get better. It took me about 9 days before I even started the basic exercises.... you need to do them, as it gradually helps. I now have a good 95% movement without pain but still experience some pain when pushing it. Still sore at the end of the scar and under arm/shoulder area due to baggy tissue left so that it can be used to help to shape my book when I go for reconstruction. Hope this helps. (Had lumpectomy in April followed by mastectomy in June) Keep your chin up and stay positive-it really does help. X
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28-07-2017
11:03
Quick update for you. Saw oncologist today who said that I needed chemo for best outcome. Having FEC T and have the option of a cold cap. Pre-chemo on August 8th followed by first session on 11th. 6 cycles will take me to December then radiotherapy to follow 3 weeks later, just in time for my birthday! 😕
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27-07-2017
08:41
1 Hug
Hi. Thanks for getting back. I was told all the way through that chem wasn't affective on lobular cancer so i would just be having radiotherapy. After investigating my tissue they found cancer scattered throughout and now think that it could be an option. Have to see oncologist tomorrow to have that discussion. Will update you when I can. X
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25-07-2017
07:29
Hi. Going to oncologist on Friday to discuss whether chemotherapy will now be part of my treatment. I have read about wigs on this site and saw that the voucher amount depends on your health authority. Does anyone know what the value is in East Lancashire? Thanks
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25-07-2017
12:48
Hi. Sorry to hear this. I have to see oncologist on Friday to discuss whether chemo might be of some benefit-diagnosed in March, WLE and SNB IN April and mastectomy and ancillary nodes clearance June. All the way through I have been told chemo would not be part of the plan so this has come as a shock. U-turn due to having mulltifocal invasive lobular cancer throughout and in yet another node. Have you any tips you could share? Is this the first time of feeling g tired or were you tired after the first cycle? Thanks for any advice you can share. X
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17-07-2017
10:42
Thanks for detailed info. I will know what they are when oncologist refers to them if I decide to go down the chemotherapy route. X
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17-07-2017
09:33
Can you explain what the oncogene results are? I am seeing oncologist on 28/7 to discuss the possibility of having chemo (big u turn-was told in March that I wouldn't benefit from chemo as it isn't really a benefit with lobular cancer. How is your score decided? Thanks
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17-07-2017
09:19
Hi. After being diagnosed in March and told I would be having radiotherapy, there is now a change. After failed lumpectomy and now a mastectomy, the results have shown multiple areas of cancer, a large tumour and 2 affected lymph. Consultant has referred me to oncologist to discuss chemotherapy (total shock as was told I wouldn't need chemo has it doesn't really have an effect on lobular breast cancer). I was told we'd go over percentages and benefits so I could decide if I want to go down this route. I have read that some people have picks and some have ports.How is the decision made for which methods of receiving the chemo drugs and what's the differences between the different methods?
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14-07-2017
08:13
Thanks for info Jen Jen. I am setting off in 20 minutes to see consultant. Fingers are crossed. Hope you are still feeling good. X
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13-07-2017
04:56
Hi Maryminder. Thanks for the info. Hope you are feeling ok after the radiotherapy..I read that it can be very tiring. X
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13-07-2017
04:54
Hi Silverlady, Thanks for the info. Hope all is going well for you. I see my consultant tomorrow to get the full report after having my mastectomy 3 weeks ago. Will find out exact plan then but I know it will definitely involve radiotherapy...she told me that right at the start. X
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