Yipppee!!!!!! MRI on head is clear! All is fine 😁 omg I can't tell you all how relieved I am, I had totally convinced myself there was something wrong.
Thank you to you all for "holding my hand" I can now start to look forward to my holiday!
Hugs Janette xxxx
Hi Corey I was sorry to hear about your blood clot and that you have to have a hysteroscopy. Hope it's not too uncomfortable and that the chemo goes well. Not much comfort but at least the traffic has died down a bit now. xx
ive been on Zometa about 4 months. I have it every 4 weeks at the same time as I have a chemo blast. Because of this I never can tell if side effects are due to Zom or chemo! Always assumed it was the chemo as don't notice anything particularly worse every 4 weeks....
I'm one of the other ladies just started on Eribulim. I'm cold capping but they said the same to me re no real evidence if it works but having done 4 months on paclitaxel and managing to keep hair with CC I'm just gonna keep going till it falls out. It is thinning on top and the session last week was extra agonising in the first 15 mins perhaps because it is on direct skin...almost unbearable but i managed.
I'm sitting in the waiting room right now for my second blast of Erib.. . Have been here 1.5 hrs waiting already. Brought my cushion with me so gonna take a nap soon!
Good luck on it and fingers crossed the CC works if you go for it.
Oops pressed wrong button!
Janette, I do hope you get those results quickly, it's bad enough waiting for any of our rsults but even more anxioius when brain involved. Do let us know when you hear anything. Sending positive energy your way
Hi Maria Louise,
I,ve been on Zometa for six years now. As long as your veins are ok or you have a line or port it's quite easy and doesn't take too long to administer, I often have to wait longer to be seen than the treatment takes to give! Basically they will cannulate you then hook you up to the bag on the machine, they normally do mine over 15 -20 minutes, then they flush and unhook me.
Some people find after the first dose or two that they get flu like symptoms for a few days - I never did. I do find I get a bit more tired and ache a bit more just before zometa is due and maybe a day or two after, but not everytime and nothing major. I would encourage you to drink plenty of water on treatment day to flush your kidneys. Hope all goes well.
Corey, try not to worry too much, as FF says there are all sorts of things that can affect u, lots of them quite simple and nothing to worry about. I've had a few histeroscopy procedures over the years ( for things like polyps )and have found them uncomfortable rather than painful. Good luck.
Janice, there does seem to be a reluctance to use the coldcap with Eribulin, I think it's often because the treatment time is short and the cold cap has to be on for so long, but try not to pressured into not having it if you want it, there are several women here, including Helen and Sharon who do have cold cap with it.
Corey, I've never had a pic line would a port be better? My mom had a line that was in the center of her chest and hung out. It always gave her a rough time. I don't think they had ports back then. Are ports prone to clots? I just know my port has been easy and I hate seeing others suffer with hunt the veins or problems with the pic line. I wouldn't get one at first and then my oncologist said I had too. I was furious at the time. Now, I can't say enough good things about it!
Corey, what a pain. I didnt get a blood c;lot through my line but did have a pulmonary embolism and had to inject for 6 months. As with everything else i just had to get on with it and you will too. It always seems that just as you cope with one thing, something else comes along..we never seem to get a bteak do we? At least your team are on the ball and getting tests done quickly. Fingers crossed for favorable results. xx
Oh, Corey, that is such a shame! Just what you don't need! Sorry to hear about the blood clot, too! I have had a hysteroscopy, so know what it's like - not pleasant, but if it can put your mind at rest afterwards it will be worth it. When you say you spent 5 hrs in hospital, I hope you meant your local one, and didn't have to travel all the way down here?
Hugs, and thinking of you. Barton.x
I am starting Eribulin on Wednesday after 6 months of Paclitaxel which has stopped working. I cold capped during the latter as I was told it worked really well with that particular chemo and it did although my hair was in terrible condition and still is 4 months on. Found it a very uncomfortable experience but if it works worth it.
The nurses at hospital say that patients on Eribulin don't use it as it is such a quick chemo and no evidence the cold cap works with it. How long do you have it on before and after?
I had a port fitted under my skin as my vains are worn out, not a particularly nice procedure but saves a lot of time and anxiety.
Corey, It could just be something hormonal .Our natural hormones, chemo and any hormone therapy we are on can make our bodies do crazy things. Try not to panic! I had an unexpected period in the middle of chemos one time. My oncologist was the one freaked out. I asked for a blood test to see where my hormone level was. If came back that I wasnt even in pre menopause yet. I was 52! He still wasn't satisfied and made me go for more tests. Everything was fine. Never had a problem again. I was sorry I even told him!! FF
I am due to have my first "bone juice" injection on Wednesday and wondered if you could just give me a quick idea of what to expect ?. I will be having Zometa, not sure if anyone has any experience of this.
Hope everyone else is ok. Janette, I can't concentrate on anything for days before I have results due and get quite snappy so I hope yours come through soon and that you can have a big sigh of relief before your holiday. xxx
Janette, Sorry you have to wait for those results! I really think when it's our head they should have them right away. They know when it involves anything with the brain people are frantic. May I ask are if you are ER +? Your vacation is going to be wonderful. I like to go anywhere the car goes. I don't like really long vacations. Two weeks is long for me. How long are you going for? Hugs, FF
Great news, Carolyn - you're a right little bleeder! Sorry folks! Just couldn't resist. Glad it went well for you, though. Good luck for the bone juice and clinic meeting on Wednesday. Will be thinking of you.
Oh Sharon, I hope that the chemo process gets better orchestrated the next time. I hope your SE are minimal and that you can rest up and enjoy some of your 2 weeks away from the hospital and doctors! It will feel like a vacation. Please do yourself a favor and get a port. First thing my thing my oncologist does when you need long term chemo is look at your arms. He almost always says you need a port. I've seen very few people without them. Hugs, FF
Hello Sharon - glad you got your chemo in the end. Sounds like you had another very tiring day, though. Hope you got plenty of rest last night!
Best wishes. Hugs. Barton.x
Well done Sharon, i usually have a long wait. , our unit has four rooms, sometimes 20+ in three of them, just lately there seem to be less nurses too. Anyway, they wont pet you arrive before your time and then you are told'chair x, in Room x' yesterday there was still a lady in my chair! She told me tnat she would be another 8 minutes, but when the nurse came they chatted for a while about her daughters uni and then a lady opposite had a scary turn.....had difficulty breathing after her chemo....poor lady.
eventually nurse came, looked at my srm and them I had to ho and sit by the sink etc!
however whe got a vein straight away.
I agree with Carolyn, du try and have a lovely rest. Hope you are feeling well otherwise? I wont mention the s word!
love and hugs, Moijanxx
Good luck today Sharon, we'll be holding your hand.
Moijan. I think the placement of the port is pretty much down to the surgeon though I think I'd still have a word with him/her and state my preference if I were you, also don't be brow beaten into accepting a placement that you are really unhappy about. Mine was put in by a woman and she put mine on my 'good' side above the breast below the collar bone and slightly to the left. Unless I'm wearing something really low you can't see it and actually the port itself is quite small and not really noticible, just a little raised bump, the scar underneath, where she originanlly accessed it shows more. I do know someone who has it their arm. When it comes to the time good luck, don't be shy about where you'd like it, it's your body, but don't forget the nurses will need to get to it relatvely easily.
Julie D, how big is a power port? I understand my hospital uses one which is ct and mri friendly so likely its the same one? And is it obtrusive? Were you able to request the site? I hear some people have them in their arms...much less obvious than an extra erect nipple where you wouldnt expect one!( sorry!)
Good luck tomorrow Sharon, i went for mine today and the nurse gave me my blood results...all good, thank goodness. Strangely enough they got my vein first time! Isnt life odd? I cant believe how quickly im in and out of the unit when things go well,I trotted off to buy a purple wig, but they were out of stock!
Helen, I am on the same page about the forgetting things and the clumsyness. i am not sure if its the chemo re forgetting things, or just all the extra things to do that being on chemo has given me and trying to fit in my other commitments. One thing I have found this cycle, is that im much less tolerant, I think Eribulin is affecting my mood.... Time will tell.
Ladies, thank you all so much..... Helen, Babsy, FF and Julie D, for your helpful responses to my query.
to be honest, im likely to have one put in...a picc is not really going to be suitable because I use that arm vigorously in excercise, also I want to go back to swimming when. I can. They cant take bp on that arm and its my only one too, and im a bit fed up with getting infections. S**ds law, ill get one with a port!
I have a PICC line and love it though it has to be flushed once a week but the community nurse comes and takes bloods too and she is lovely. Trouble is I never know when she is coming so have to plan to be in all day, but I just arrange visitors that day so it's fine :-)))
Gosh my memory for words is getting worse.. Assuming it's just the chemo brain after 4 months of paclitaxel - does everyone else get that? Can't remember the word I want and keep doing spoonerisms!! Eg I said to my friend yesterday "do you Cancy a Fucca?" Instead of Fancy a Cuppa! Can be quite funny sometimes ;-). Fortunately she's got a good sense of humour.. Sorry to be lower the tone!!
Also ultra clumsy too.. Must be the peripheral neuropathy ...
Hi everyone, getting a portecath was the best thing I did. My daughter, a nurse recommended it but my hospital hardly does any for cancer patients. It really did give me freedom. Unfortunately mine got a rare infection, as the skin around the scar tissue ripped as it got thin so I had to have it removed but I had finished chemo and blood transfusions so timing was ok. Funnily enough they can still manage to find one working artery in my arm which wasn't really there before. Perhaps my body had time to heal? Still getting blocks of pain but hate taking painkillers. I've got my bone scan on Monday (5) but don't get results until 19th!! After the brilliant results last time, 60%+ reduction of cancer in bones I am SO nervous about this time, especially 'cos all of the pains. Going on holiday inbetween scan and results so hopefully will make time go quicker!! All the best to all of you who are poorly, sending loads of hugs. Xxxx
Moijan, I have had my port since March 2006! Mine is in the right side of my upper chest! It does not show with most shirts. It was the best thing I I ever did! I've never had any problems with it! When you are on an oral chemo they like it to be flushed every 4 to 6 weeks. My oncologist said since mine works so great every 3 months when I come for my check-ups is fine. I watch all these people playing the hunt the vein game just because they don't want a port. I think it's fear of the unknown. My oncologist has had me speak to other patients about it. I've convinced quite a few over the years to go for it! They have all thanked me later. No one complained about getting it. FF
Helen, glad you got your cold cap well done for sticking to your guns, hope it works well for you. When I was on chemo with my primary I didn't bother, thought I was going through enough without adding a cold head, but we are all different and losing my hair whilst not what I would choose wasn't a huge issue for me.
Sharon, hope you are feeling much better now and good luck tomorrow. Make sure you let them know just how much this one affected you as they may be able to offer something to make the next one easier for you.
Moijan, I have a port, it's a power port so in theory can even be used for contrast scans (though in practice lots of hospitals don't/can't use them for scans). It makes life so much easier! I only have the 'good' arm for them to use and the veins are now pretty non existent and very hard to find one and gain access. The port means I don't have to go through all that horrible hunt the vein, they can take my bloods and give me my zometa through the port.Even on days when they can't access port first time or if it decides to be temperamental and not give blood, it's a far better experience than hunt the vein, I wouldn't/couldn't be without my port now.