Oh Cherry! It's Jane's fault for saying, "I really hope they get cracking next week Cherry" lol
My Portacath - I wasn't consulted beforehand, but it was situated 1-2cm in from the centre so it didn't interfere with anything.
Oh Cherry......so sorry to hear this. Can you walk at all? How will you get to the clinic? Is your daughter still with you? Sending loads of love. Xxx
I really hope they get cracking next week Cherry - being in pain to the extent of been kept awake is no fun! I hope you have a lovely weekend with the family.. the weather is certainly brighter for it, which always helps.
I wish there was more we could do to help... If you fancy a coffee anytime, pm me or email me....
The sun is shining, the garden is calling, but I have stuff to prepare for tomorrow morning, so I'm inside... Ah well.... Daughter's coming home this evening for the weekend, so I'm looking forward to that (and the fatted calf!)
Have a good weekend everyone
Where did they place your port? All I really know is that I want to avoid the bra strap.
Wandy, Give gentle hugs to your friend for me. I don't know if you have tried to email me but I haven't received anything.
I have been looking on various websites and there are some people who stay on taxol as long as it is working. Also, there are many who have taken a break from tax, gone onto something else and than returned to tax at a later date. My onc explained that I won't be able to have epirubicin again. There is a lifetime dose for this drug and although after 6 FEC I am not near the lifetime dose yet. I would at most only be able to have 2 cycles before we would have to stop it, even if it were working.
I am having a lot of pain especially the neck pain at C7 which is radiating down my arm. It kept me up most of last night. I should be having a planning CT for rads to it on Tues although I haven't heard yet about an appt. I am keeping my fingers crossed that they start treatment the same day, as for some the pain relief can be immediate.
I had the staples out of my leg yesterday but unfortunately one of the incisions opened about an inch and we are trying to hold it together with steristrips. I have to go back to the hospital on Monday to get the strips and dressing changed and if it doesn't close I will have to have it re-sutured. Surgeon was in clinic and came to have a look at it and said there was no infection. Just that the skin had overlapped under the staple so hadn't knitted together properly.
I am looking forward to the warmer weather. My daughter and family are coming here on Sun and staying until Tues as my grandson's birthday is on Mon. All the family gathering here for a birthday tea in teh afternoon.
Hope everyone is doing well and have something nice planned for the weekend, too.
Love, Cherry x
Did they suggest anything for the peripheral neuropathy? I have been reading on the US website that they are using socks and mitts that can chill your hands and feet. Some are using bags of frozen peas.
I am not so worried about my hair. Having lost it once before it doesn't seem such a big deal to lose it again.
Taxol is different to Taxotere, as we have both said.
I was supposed to have 21 Taxol but it was abandoned after 15 because it affected my fibromyalgia too much and even morphine wasn't really helping. The Oncy said that with any chemo, the first few treatments are the ones that do the work and the rest are belt'n'braces.
Overall, it was a doddle after the horrors of EC which put me in hossi a few times. Itw as only the permanent fibro agony that made them stop it.
Hope this helps xx
Congrats Jude on the clean scans. Have you decided on just going for the mammo rather than mammo and appt? I was told at first diagnosis that they would do yearly mammos for 10 years and then I would fall back onto the normal NHS screening of once every 3 years.
I am getting taxol not taxotere. The side effects are slightly different. The ones that the onc emphasised were hair loss and peripheral neuropathy. Looking on line it seems that taxotere is more likely to cause sickness while taxol causes taste changes - everything tastes metallic apparently. I may get nail changes but skin changes and rashes are more likely with taxol. I am keeping my fingers crossed that I will not get SEs too badly. Administering it weekly should be more gentle. Infection risk, sore mouth, anaemia seem common to both.
Ninja, as you had taxol, what were your experiences of it? What did you do to cope with the SEs?
My first taxol will be by IV but they are then going to put a portacath (implanted port) in. Had all my FEC by IV last time. They don't do PICC lines which I am glad about as I can see my grandson giving it an almighty tug if he spots it.
Anyone's experiences with ports would be helpful?
Still in pain this morning but slept better last night than I thought I would.
Cherry, I had Tax, and was advised to paint my nails dark - something about light on the nailbed making them more likely to lift. Anyway, I took the opportunity to get them done every week (just painted, not properly manicured cause of infection risk), and used it as a treat to self. Seemed to do the trick - I didn't have any real problems He also advised me to wear nail varnish for a year afterwards, or they would go soft in water and flake off. I was good with the hands (clear varnish cause I was back at work), not so good with the feet, and he was right - one nail floated off after a shower! (sorry if that's too much information!)
Hope you get the right cocktail for the pain....
love to everyone.... white grass here - freak hail storm and the residue looks like snow!
roll on the sunsine!
Cherry - I had weekly Taxol and I didn't put dark polish on because any polish made my nails dry - it's the dryness that made my nails flake and break. It was only (a year later) when a beautician suggested using oil on the nails that they stopped snapping.
Taxol is kinder on the nails than theTaxotere that makes them brown. Weekly Taxol is kinder than a big dose every 3 weeks - my Oncy did that for me so as not to irritate my fibromyalgia too much.
Thanks Wandy. I have had one before and I should be over it by Sat morning which is a (very little) comfort. The onc says it is a indication that it is doing its job and can potentially provide some pain relief for which I will be very grateful. I reveiwed my MRI with the onc this morning and it is almost certainly the mets that are causing the really bad pain eminating from my neck and down my arm.
I want to go and lie down but I am waiting for grocery delivery (youngest has had to go out). They should be here any minute.
Not certain about oromorph as I have had morphine in the past and it makes me ill. The BCN said to contact her if the tramadol was causing hallucinations. So far I haven't had any.
Groceries have just arrived. Bless Ocado!
Sounds as if you are healing well and are now being spared the long journey to and from hospital.
They still haven't got the results of the biopsy. It apparently takes longer to do the analysis from bone as opposed to soft tissue.
In the mean time, I am doing 18 weekly taxol, with scans every 6 weeks to check on progress starting next week. I am having rads planning next week, too, to have some RT to my spinal and pelvic mets. We will do RT to my femur a bit later.
Had IV bisphosphonate this a.m. too and every metastic bone in body is zinging with pain. Taking tramadol but it's not making a huge impact.
Do any of you having any tips for dealing with nails and hands while on tax? I have read that some paint their nails a dark colour.
So happy for you Wandy.
Cherry, you seem to be getting on and hope fully will start the treatment soon to sort out those baddies.
I'm improving and healing at last. My tummy has stopped oozing and the t*t end has skinned over. The hole in my tummy is now tiny and so I have been sent away with home treatment and dressings for ... a month! Such a relief not to be doing a 40-mile round trip three times a week. I can now start to plan days out etc.
Love to everyone, and the ones I forgot to mention xx
Looks like things are moving forward.
I spoke to the onc this morning and am seeing him in clinic on Thursday to discuss my treatment plan and also having ibandrontate infusion the same day.
New problem I have is nerve pain in my arm. My neck met is in the C7 vertebrae but my MRI also showed degenerative disc disease in my neck so it could be either causing the pain. I spoke to the GP and I am switching over to tramadol from the co-codamol for the time being to try and get some relief.
Going for CT planning/rads to my pelvis a week today. We may do my neck also but it needs some thinking about.
So pleased I am getting the IV and rads and finally getting my treatment plan.
Still wondering what the biopsy said. Worried that the mets might have dropped their er receptor and I am now TN.
Hope everyone is doing OK. How is the healing going Ninja?
Lovely and sunny here this morning. Took a big step forward yesterday but not with my legs. I hired a gardener. I am relieved that I have someone who will look after it it for me. I have done hardly anything since last Nov when I started getting back pain, so he will have a lot to do.
He is cutting the grass this afternoon and tidying the front borders. Will throw open the windows and let the smell of fresh cut grass come in!
Hope the physio works well for you Mandy.
DON'T feel guilty! That's all I am going to say about that. I am just so pleased that karma, or whatever, keeps the world in balance and for every person who gets bad news, there is someone like you that gets good news! I am so thrilled that you have been given the all clear and can get on with some physio that will very hopefully bring you some relief from the pain you have been having.
Did they say what was causing the degeneration? Is it your hormone therapy?
Doing better each day. Have cut down on my pain meds again as the leg heals and the swelling goes down. Having the femur better supported has taken away much of the pain I was having in my knee. My knee was taking the strain rather than my thigh bone it seems. Getting about with just the one stick and went outside yesterday for a little bit which was lovely especially as they say that the weather is about to change.
Ninja, It also causes redness of the skin. I got a red flush similiar to the one most of us got with the steriods we were taking with chemo.
So pleased that the healing is moving forward and you can cut down on the hospital visits.
Thanks. I've never heard of that one.
Anything gut-related really gets to me because of my Crohn's.
On a happier note, I'm now promoted to only one hossi visit a week. The pack has been removed and I can now fill it myself with some magic gel under a dressing until my next appt on Monday. Every cloud...
I rang the ward and found out the name of the AB that caused me so much trouble. It was teicoplanin.
Diarrhoea is an uncommon, but known side effect.
Ninja, It wasn't Metrodanazole. That one is already on my list of no-nos because of the same experience you had. I forgot to take a note of the name of this one but I will be certain to find out. When I do find it I will pass the name onto you as it might effect you in the same way, if you already have trouble with Metrodanazole. I lost 3.5lbs while in hospital. Probably more as I now have a sizable chunk of metal in my leg.
Jane you enjoy that bike ride. I can feel the sea breeze on my face just thinking about it!
I was taking a daily walk, not far a mile and a half and I really hope I can back to doing it again soon.
Just knocked back 2000 IU of Vit D3. It is a bit like closing the door after the horse has bolted but if it helps to boost my immune system, I am all for it. The GP is going to call tomorrow and I am going to ask for a blood test to measure myVit D serum levels.
I am doing a lot of online research into treatments at the moment. I intend to keep my onc on his toes!
Cherry - was it Metrodanazole? That gave me 2 weeks of urgent, watery poo and a metallic taste that put me off eating.
Five miles, Jane? Well done - my record since surgery is 5km (3 miles-ish) with a coffee break half-way.
Wishes to Wandy.
Hugs to everyone else xx
Have finally surfaced this morning. Sore and still tired despite sleeping very well last night.
I had a bad reaction to the ABs they gave me in hospital. I went to the toilet 16 times in 24 hours and despite me saying that I knew it was the ABs, they gave me another dose. Then an hour later the consultant came in and said I didn't need them so I went through another day of toilet hell before the effects wore off. On the plus side, it got me up and mobile very quickly as I couldn't wait for the nurses to come and take me to the bathroom.
I am so glad to be home. It was so nice to be in my own bed last night.
Wandy, my thoughts are very much with you.
Good to hear from you, Rach.
Out in a wheelchair, eh, Cherry? I remember being taken out of my ward to see the sunshine in a chair after my Mx. It makes such a difference to feel fresh air.
Wandy, the news should be coming soon and I hope it will all be OK - everything is such a worry these days that we automatically fear the worst about everything.
Good news for Mandy!
Im still oozing and have my cavity so still going to the hossi every 48 hours. I managed to do some gardening in the sunshine today which was wonderful - it felt like normality is being resumed.
It's my three-year cancerversary in a couple of weeks. It's going to be a strange day.
Glad to here you've been out a bit, Cherry, and that your op went well. Hope things keep going well for you. Wandy, I hope you hear soon, the waiting is awful isn't it?
Ninja, hope you're going along okay now.
Mandy-fab news. Must be a huge relief.
Hope everyone is able to get out in this gorgeous Spring sunshine.
Hugs to you all
Hope you are continuing to do well Cherry. All went well with me...results sometime this week, so a bit of waiting to do. But will keep busy!
Hope everyone else in good form.