Hello, all. Hope everyone is not suffering too much.
I have a blood test at me doctors surgery 2 days before my chemo, and I see the Onc.every time an hour or so before getting poisoned. I thought that was normal!
In fact, it’s poisons day today - YAY (NOT!) 2nd Tax this afternoon. NOT looking forward to it (and that is the understatement of the century!). Had quite a few very rough days after the first.
Just a quick question for anyone who has a Portacath. I am hoping to go away for a week at the end of August, which would mean delaying my last chemo for 1 week as it’s due the Thursday we are away (Isles of Scilly - SO looking forward to that). Do I have to get the Portacath flushed that week? Or will it be alright until the following week? I know I can ask my Onc. this afternoon, but that depends on me remembering (!!!).
My onc nurses told me it needs flushing every three to four weeks … but you’d better check as everywhere seems different. For instance i only see my onc every six weeks … in fact, have two more EC and he doesn’t want to see me till march!!!
Barton, you should be fine. Advice supplied by the manufacturer of mine reccommends flushing every 4 weeks or after every use, and of course treatments are usually every 3 weeks, so that takes care of it. Get confirmation of this from your onc, but I would expect them to have no problem at all with you having a week’s delay.
Thanks for that, CM & angielav. I couldn’t remember what they said at the meeting with the Chemo nurse before I had it fitted. I knew it was either 3 weeks or 4. If it was 3, I suppose I would have to try to arrange it for the hospital on the IOS - not quite sure if that would work!
Hi all,
Just dropped by to say I hope everyone is doing OK.
I have spent this am. emailing my family who are scattered to the far corners of the world asking if they will share their histolgy reports with me and death certificates of family members at the the request of the clinical genetics people who I am seeing next month. Didn’t know getting screened was this involved!
At least i felt up to doing it as SEs are subsiding.
Where is everyone today? Hope you are all OK.
Met with onc this morning, and he is going to book me in for rads now so that I can hopefully get started at the end of Sept/beg of Oct. I bet he is being optimistic and it will be nearer mid Oct. We will meet again before I start.
We went through what would happen once the rads were finished in terms of follow up. My first mammo should be a year after my surgery, so that would be next April. I will be followed up regularly for the next 5 years and then handed back to the NHS screening program but I will get screened by them every two years instead of the usual 3. I know I still have two more FEC to go but it was really nice to be looking past that to rads and follow up.
Must try and come on here more often as so much is happening to everyone and I can’t keep track. Had FEC 5 today given Emend then told have to have horrible injections IN MY STOMACH AND I MIGHT WANT TO DO THEM MYSELF Are they mad. Yikes. I shall get the district nurse and after a couple of goes will get her to teach OH how to do them as I would have to tackle it blindfolded. OH’s ok with this, superstar. Been told they’ll make my bones ache :(. Anyone else had these? Did they work and how bad is the bone ache?
We’re off next saturday (13th) to the Comedy Store in Leicester Sq, OH’s birthday and long standing tradition, so will have to inject myself as better done in late afternoon due to bone ache. Was concerned about where to dispose of needle as wouldn’t take mini sharps bin with me. OH said just leave it in the loo like everyone else. (I shall be moer responsible in case you’re worried).
Last time I was on the underground, wearing scarf to hide baldness, I was sitting opposite a woman with rather knobbly knees. Realised she/he? was a cross dresser and I was given a very sympathetic smile, my first reaction from a stranger. Thank you whoever you were, I think I have problems looking feminine?
Ninja, you’re either amazing or mad, what a gal. Can’t remember who but whoever was hesitant about going to LGFB, go. Not only did i Receive a brilliant goody bag, (Clarins mousse type foundation is the best I’ve ever tried and I’ve been searching for 40 years for a good foundation)but I made a new friend whom I now see regularly, and lives nearby.
Wandy, I hope you managed to get Emend. I’m waiting to see how I feel as I write as this is about the time that the SE’s begin to get nasty and I’m still feeling reasonable, fingers crossed.
I’m sure my hair is starting to grow back. Hope I can hang on to it. Leg hair still on shins like a shetland pony, Lady garden has some growth in the borders but the beds are bare. Not sure what this style is called and daren’t google it.
Now have my dates for rads, 15 then on to Arimidex. Will have bone density scan at new Pembury hospital.
One more feccing feccing to go then FREEDOMMMMMM.
May your pleasures be shared and your side effects be small ones.
Started my oil painting classes this week, and just brilliant, learned so much just in one lesson. Watch this space.
Hipchick-I’ve had the nasty little 'jections from day one as my neuts kept dropping to 0.1! I was scared at first but have done them all myself as I didn’t want to wait in every day for the district nurse. I find them easy to do but they do give me quite a lot of pain, especially in my neck, chest and spine. It was worst after the first FEC and not as bad for the other 2, really bad on first TAX and not quite so bad this time. Painkillers did help though and I haven’t had to go back to the chemo unit at all in 5 cycles as my neuts have been good, so although I don’t like them they are doing their job.
Cherryorchard-It does feel better once you can look ahead doesn’t it. I keep thinking that in 2 weeks time I have my last chemo and it sounds so good. I know I have a long way to go but this is the worst part nearly over.
Does anyone know what the guidelines are on node clearance v radiotherapy? I go to see my onc on Monday and surgeon the following week and want to go armed with facts. I want (and will have) a double mx because of family history, so don’t see why I need radiotherapy to breast, and therefore would rather have op and combine with node clearance, but the surgeon said i might have radiotherapy instead. My preference would be to have them removed, as i feel i can’t get cancer in something that isn’t there.
Have been for walk and picnic with friends and kids today and am feeling much better.
Hope everyone’s okay and not suffering too much
Love Rachel x
Rachel,
My onc did said to me that if I had any positive nodes they would be irradiating the axilla (armpit) but as my nodes were negative they wouldn’t be doing that. Still having rads to the breast but than I had a WLE. Read somewhere else that they didn’t always do rads to the chest after MX. but also read that it depended on proximity of tumour to the chest wall. You will probaly have to ask your onc.
Hipchick, I have the Neulasta injection and don’t suffer any SEs until about a week later, when I get aching bones and lower back pain but nothing too horrendous … put it this way, I still do a 5K walk at the gym!
As for nodes, I had a total clearance but only 1 in 10 was cancerous. I had a mastectomy but because of the good result with nodes, I don’t need rads.
Oh and just had my hair clippered. Fed up of long bits and bald bits and still shedding … and although it was upsetting to see it go, its actually a great relief.
Think I need to sit on the Grumpy bench in the Woods… Went to have rads planning appt this morning - up at 6.45 (ouch) got there too early… brilliant people… got home by 10.15… rang the Nurse to talk about thrush (still/again) went to get my nails done properly… drop into surgery… get new prescription… go home… then out shopping with a friend all afternoon… and guess what? I’ve done too much for week 2 post chemo (did I tell anyone I FINISHED!!!) Good news is that by 14th Sept I shall have finished rads too…
Nodes/rads… my surgeon said if more than 4 nodes were affected I would need rads…
Injection - not had any side effects from it at all, ever.
Going out again tonight - feet up for a bit now… ttfn Jane
Hi All,
Have not been here for ages, had my first TAX 2 weeks ago, and have been really ill ever since, under the covers for over a week, just about every part of my body hurt with pain and infections. Unfortunately one hospital admission for high fever and IV of antibiotics. FEC was a walk in the park compared to TAX, also suffering with an abscessed tooth that I’m hoping I can nurse along for 7 more weeks as I can not have any root canal work done while having chemo…arrgghhhhhhhhhhh
Does anyone know where you can get the ice pack gloves for hands and feet? I hear they are so good to use while having TAX and do save your nails.
Now trying to decide if I should have the axillary clearance before radiation, when I had my lumpectomy and SNB they found one node out of 5 that had a micrometastasis, apparently there seems to be some controversy on this surgery now, interesting link here from the New York Times…would appreciate your thoughts or opinions on this.
Thank you for info on rads/node clearance. I just want to get it sorted and a plan in place. I hope you are all okay and enjoying the sunshine x
Noanie
Sorry you’ve had such a bad time on TAX. TAX 1 was just like that for me but TAX2 has been nowhere near as bad. I only had 3 days of feeling really bad this time and even then it was manageable with pain relief. Today (one week after tax 2) Ihave walked about 4 miles with the dog, been for a picnic and feel great. So I hope it’s like that for you too. The article on axillary clearance was interesting, thanks for putting the link on here. I just want to know what the surgeon is going to do as I am frustrated at not knowing and it stops me making plans. My gut feeling is that I would like node clearance after chemo because my Mum had it and is still here 38 years after BC. None of my other relatives did and none of them are still with us today. I do realise that having radiotherapy is probably just as effective but losing 9 members of the family makes me slightly irrational about the whole thing. Also, as I’m having double mx anyway they might as well take lymph nodes at the same time and then I won’t need radiotherapy anywhere and can start to move on and carry on with my life. When is your next TAX? Might see you at RSH if our dates clash
Love Rachel x
I had full node clearance and rads - cause there were 10/18 affected - but they wouldn’t know that unless they’d taken them out. The rads do the nodes above the ones they can clear - as the surgeon cheerfully said to me “we have to do that, becasue the only way we can SEE those nodes is if we take your arm off” !!! Kind of attached to it, I said… Jane
Thanks folks-I keep seeing different oncs every time and each one says a different thing, and they all say they need instructions from the surgeon first. It’s so frustrating, as obviously I just want them to do everything possible to stop the cancer coming back (except maybe remove my arm Jane!) I think I will just have to be a bit more assertive when I go next week. I think maybe I will take someone with me to back me up.
Am really bored with all this now. Found myself looking longingly at shampoo in Boots the other day! Hope everyone has a lovely weekend. I’m off to watch my girls riding now.
Rachel x
given Emend 
Are they mad. Yikes. I shall get the district nurse and after a couple of goes will get her to teach OH how to do them as I would have to tackle it blindfolded. OH’s ok with this, superstar. Been told they’ll make my bones ache :(. Anyone else had these? Did they work and how bad is the bone ache?