Breast Cancer Now Forum

Nice to hear from you again Nipinuk Linda, but sorry you are having problems. I'm not sure what it is you have but it sounds like some immunity problems?   I'm doing well, touch wood. I finished my last Herceptin in April, and prior to that in January I had my first annual review mammogram, which was clear. We were euphoric after the mammogram results but only for 4 days as I then got a diagnosis of diabetes! Came as a huge shock, but after reading loads it seems it is quite common for such a diagnosis after chemo and whatnot. Anyway, I'm in tight control of it through diet, weight loss and exercise. No medication.   Take care xxx ... View more

Sending love and gentle hugs to Sandra and her family. xxx ... View more

Hi fowey,   On the day of my last Herceptin my chemo nurse sent the forms through for the port to be removed after checking with the oncologist. It was removed 4 weeks later. She did tell me that sometimes the medical staff forget to do this and some people are left with ports in for a lot longer. It may be wise to ask, and when the time comes keep reminding them.   Good luck with your chemo. It sounds gruelling x ... View more

Hi everyone,   I had my portacath fitted over 12 months ago. I had the usual 6 sessions of chemo, 18 Herceptin infusions and countless blood tests via the port. It has been my best friend. Unlike many of my friends I have 2 good arms and excellent veins. During the actual infusions it is so easy. You can go swimming with them, bathe and shower without any messing about. No pain. No stress. No hunt the vein. No bruising.   I had mine removed last Wednesday. It took 10 minutes, no sedation necessary, no problems. This was a big milestone for me and a signal my treatment is all over. ... View more

I didn't have the injection for cycle one and ended up in hospital with neutropenia. For all subsequent cycles I had the neulasta jab and kept clear of neutropenia.   I started to take paracetamol immediately after the injection, 2 tablets 3 times a day for 3 full days as advised by the oncologist. I never had any pain. It is better to build up the painkillers in your body before the pain kicks in, if you see what I mean! I know it can be very painful, but much better that (and much safer) than becoming neutropenic. ... View more

If you are HER2+++ then you need Herceptin, and you really do need it. In primary breast cancer cases Herceptin is only licensed for use alongside chemotherapy. Therefore HER2+++ means you have to have chemo.  It is a no-brainer. ... View more

Hi,   Will you be having a port or a PICC line inserted for your infusions? If you have a PICC line then swimming is out I'm afraid. It is OK to swim with a port.   However, I wouldn't risk the sea at all. The last thing you want are germs and bugs whilst on chemo when your immune system is very much compromised. Personally I wouldn't have swum at all in any public place. It isn't worth the risk. You also have to be careful of the sun as your skin becomes very sensitive to sunlight and you will burn easily. The highest factor suncream on all exposed bits is essential - including your scalp if your hair thins or falls out. I say this from experience. My forehead (which my long fringe used to protect) went very red last June despite suncream. It was an area not used to being exposed when I had hair. Now, 9  months later, my forehead is still red. It is beginning to look permanent. ... View more

I have a portacath and it has been my best friend. I finished chemo last July and am still on Herceptin, with only 2 more doses to go. All Herceptin people are given ports as a matter of routine at my hospital.   I had mine inserted under a local anaesthetic by a nurse practicioner with a team of 3 or 4 other nurses. I was taken in about 12 midday and discharged about 3pm. They cut the skin below the collar bone on your "good" side to insert the plastic drum, then somehow push the narrow tube up and into a central vein above your collar bone which necessitates another incision. The tube is then threaded along that vein to a position above the heart. The procedure took about 20 minutes. I had 5 stitches in the port incision and 3 stitches in the neck incision. Neither scar is obvious. The port sits under the skin and just looks like a large lump but mine doesn't show under my clothing, nor can you see it when I wear a swimming costume.   I have had all my chemo and Herceptin infusions through the port, and also all my blood samples taken from there, apart from ones done by the District Nurses who aren't trained to use them. So I have always had good arms and veins, no problems at all. You can swim, go to the gym, do whatever you normally do. None of this is affected by the port. There is also much less risk of infection. I know of several girls who ended up with infections caused by the PICC lines, and I would have been wary of one with having a very bouncy and energetic dog!   Ports can be left in a long time. Mine will be removed after my last Herceptin dose. ... View more

Hi Emma,   Which sort of heart scan, a MUGA or an ECHO? They both do the same thing but the procedures are very different. I am on Herceptin - only 3 more to go - and have had 3 ECHO scans so far, with another one due soon. They are easy. You lie on a bed whilst the cardiologist uses an ultrasound scan (a special one that measures things). Just some cold gel on your heart area and that's it. It takes about 20 minutes and you get the results there and then. (But you need to ask). Very similar to any ordinary ultrasound scan. The cardiologist looks at the monitor as he is doing it, and you can hear your heart pumping away. It looks at the heart and determines how much blood your left ventricle is pumping out, and also looks at the heart wall to see if it is thinning, and also to check all the valves are working properly. There may be other things too.   If its a MUGA scan I believe you have an injection of dye first, then have to wait an hour, then you have the scan. I haven't had one myself so can't comment further.   Good luck! ... View more

I very much doubt you can keep it to yourself, and to be honest I don't think it is sensible either! I don't know your personal circumstances, who you live with etc. but sweetheart, you will need some help. Everyone reacts differently to chemo and you may be one of the lucky ones, but if you aren't, you will need help with cooking meals, housework, shopping and so on. Do you work? if so, you will find this is a no-no some days. You may even need a companion to take you home from your sessions, and what if you are hospitalised? It simply is not realistic. I most certainly could not have managed without my wonderful husband and equally wonderful (adult) daughter, not to mention a small handful of good friends. (and my dog!) xxx ... View more

Hi,   I should have said I finished my chemo last July, so all behind me now.   I was on 6 doses of Tax and Carboplatin with Herceptin. During my first cycle my temp rose to 38 but I didn't feel ill. However, I did as I was told and rang in, went to chemo unit and had a blood test. My neuts were down to 0.1 so I was admitted straight away even though my temp had gone back to normal. I was in hospital 3 days but they never found a source of infection and I felt very well. I was allowed home once my neuts rose to an acceptable level. Had I not taken my temp at that particular time I would never have known. For all subsequent cycles I was given the single Neulasta jab the day after chemo and was fine. ... View more

I think so far it has been done very well, from when she found the lump, through the diagnosis, and to telling her family, taking the genes test fearful of what may happen to her daughters and grandaughters, and looking at herself in the mirror trying to see what she would look like with no hair.  As for the chemo session I can't comment on the cold cap or the cannula because I didn't have either. I had a portacath. However, after my first session I went for a walk with hubby and dog, ate a lovely normal dinner and carried on as normal. I was never sick, never felt nauseous and for my first 3 or 4 cycles the fatigue never really hit me. We even managed 2 separate week long holidays in the UK during my chemo. My problem was the huge anxiety and stress about neutropenia and getting infections. It will be interesting to see how Carol copes with this.   Everyone reacts differently, and Carol is no exception. I say Well Done Eastenders (so far!) ... View more

Hi,   Sadly there is nothing you can do to get your levels up. They will go up when they are ready and not before, no matter what you do. If there were anything people could do we would be advised to do it and wouldn't be given the extremely expensive GSF injections. All you can do is to try to avoid infections and hopefully stay out of hospital.   Good luck with your blood test tomorrow xxx ... View more

Hi Ladies!   I am a February 2013 member (February Valentines) and am popping in to wish each and everyone of you the very best of luck on your chemo journey.   May I make a suggestion? Once you begin your chemo and post on here about your side effects, or ask questions etc. it is very useful if you include at the top of your post what your regime is, and which cycle you are on, because each regime has different side effects and each cycle is different from the next. For example, mine would have been: TCH cycle 3   This really helps the others that are on the same regime, and might cause less stress to those on different regimes who may not suffer the same problems.   To answer Mariecay's question about sickness. Not all chemo drugs will make you sick. FEC probably will. Tax doesn't normally. The part of the brain that makes you sick with these drugs is the same part that makes women sick during pregnancy, so those two things are related, and you may find your oncologist will ask you if you suffered from morning sickness. Mine did.   I was never once sick nor was I ever nauseous. I was given a box of anti-sickness tablets after my first chemo but never needed to open them. In fact the box is still in my cupboard somewhere! I was on Tax and Carboplatin with Herceptin.   Good luck ladies. It will soon be over and time will fly, I promise you. xxxxxx ... View more

Chemo is now a thing of the past for me. I finished 7 months ago but am still on Herceptin.   I had Neutropenia about day 11 of my first cycle (Tax/Carboplatin/Herceptin) when my neuts went down to 0.1. I had no symptoms at all other than a temp of 37.5 rising to 38. I was given an immediate IV infusion of antibiotics at the chemo unit (They sent me there after I rang the emergency number). I was then hospitalised for 3 days on IV antibiotics. After all the tests they could throw at me they found no source of infection, so as my neuts were rising again they sent me home. For all subsequent cycles I was given the Neulasta single injection on the day following chemo. I had no more problems and my neuts were normalish before the next chemo.   I also got OCD about germs and drove my family mad with it, but most of it was probably a waste of time and money on all the extra cleaning agents I bought. My oncologist simply said to wash my hands after touching anything suspect, which included bird seed and bird feeders, plus to wear LEATHER gloves when gardening and rubber ones for washing up, and avoid enclosed places where there are crowds or children. Other than that, he said maintain sensible hygiene and live normally.   On one occasion I needed to see my GP. She insisted on visitng me at home saying I must not go to the surgery under any circumstances; and our Trust allows us to by-pass A&E by sending us direct to the Medical Assessment Unit should we need to be seen at hospital.    xxx ... View more

It isn't a problem. I changed mine because of a previously booked holiday without any problems. Also chemo units change days for their own reasons sometimes, like Christmas Day or other Bank Holidays when they are closed. Mention it on your next visit, and have a wonderful time at Aintree! xxx ... View more

My GP gives me copies if I ask her. She also printed off and gave me my histology reports following initial biopsy and also surgery. If you don't ask, you don't get. Not everyone wants these letters or reports, and some people may be unable to cope with what they might say, so it isn't necessarily a good idea for them to be sent automatically, but if you ask, you will receive! xx ... View more

Speaking from a purely personal point of view, my routine screening has hopefully saved my life, and certainly my boob! I was 64 at the time, having had 6 previous screening mammograms, all clear. The 7th one picked up a grade 3 invasive ductal tumour with surrounding DCIS. The invasive tumour was 15mm. It was not palpable, and even the radiologist consultant couldn't feel it whilst she was doing the ultrasound scan, and she knew exactly where it was! Because it had been caught so early I was able to have a lumpectomy rather than mastectomy and my lymph nodes were clear with no evidence of vascular invasion. Goodness knows what might have happened but for that screening. ... View more

Hi,   I had 6 doses of Tax and Carboplatin (no FEC) and started my Herceptin with the first dose. After the 6 doses I continued on Herceptin only. Some people with secondaries have Herceptin for life. It cannot be given at the same time as FEC but can be given at the same time as Tax. I really don't know how many doses of Tax you have to have before you can have it on its own. Your oncologist will tell you this.   I had a lumpectomy and sentinal nodes removed (she took 4 nodes) and had no drain. I did ask her beforehand if I would have a drain. She said it was unlikely, but occasionally it is necessary.   Hope this helps, and good luck with whatever you end up having. xxx ... View more

I am in the North West under the care of the Lancashire and South Cumbria oncology department. I was given the Neulasta single jab for my second and subsequent cycles after becoming neutropenic during my first cycle. A District Nurse came the day after chemo to give me the jab, although I could have given it to myself had I been brave enough! My oncologist told me he doesn't prescribe it to anyone that is normally healthy for the first cycle because not everyone needs it. I think it is somewhere round 28% of patients on Docetaxol and slightly less on FEC that succumb  to neutropenia without any blood boosting jabs, so most don't need it. It's obviously a "suck it and see" situation! The Neulasta worked for me, and I didn't suffer any major side effects with it. ... View more