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Bone mets - please join in

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Re: Bone mets - please join in

Jultz, have a good trip and hope you enjoy the awards ceremony. I think we all know what you mean about distancing yourself, that's fine with all of us, you know where to find us!

carolyn, I have had my denosumab every 6 weeks for at least 18 months now, many hospitals are moving over to that timing, partly it fits in with other treatment cycles if you are on, say, Herceptin, but also I'm sure because of costs. I've not noticed any problems since changing from 4 weekly to 6 weekly (as in I used to think I got achey just coming up to the next injection but it must have been all in the mind!) so I hope it gives you a few extra weeks of not suffering as you do.

Hi to all other mets ladies, hope that treatments are being kind to you but absolutely horrible to the little uggers.

Nicky x

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Jultz have a great time in glasgow..i know exactly what you mean ...xsharonxx❤
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Jultz
Nice to touch base with you and understand that u need to move on without posting ..
Sounds good a expenses paid stay in Glasgow too. Enjoy a few vino collapsos and some nice food whilst u away.
Carolyn xx🔌🍨🍟🍫
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Hi Sharon and carolyn I'm ok I've got a scan in October. I keep checking on you all but I'm trying not to come on as much as I stress myself out. I needed a break to try and put it all out my mind but it doesn't work haha. I hope the new chemo works great for you Sharon and carolyn I hope your doing well. I will be putting the hair dye on tomorrow it came in a box it's powder you mix it with water so this will get messy lol. I'm going to Glasgow to an awards ceremony on sunday from work staying overnight all paid for. I won it last year but wasn't too good on chemo so couldn't go so I'm looking forward to that. Thinking of you all take care ❤❤❤❤
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Janette great news enjoy your holiday now you have earnt it xxx

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Yes jultz..it's nice to c u posting and assuming all is tickity boo with you now.
How was the henna hair colour ? I'm tempted to put something on mine so I don't look like an old grey bag lady !!
Carolyn xx
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Hi jultz nice to see your name pop up.hope your doing well
Sharon.❤
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Carolyn .i don't think there's any difference except that demusamab is the newest one and probably more expensive..xx..sharonx
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I cannot understand why some ladies have the denosumab injection which is seconds and some have to sit and b pumped with iv xometa. .must b a medical difference.
Anyway seen oncologist today ..well a junior one that has just started ..guess I'm stable and don't justify the main consultant.
I've asked to have my denosumab injections six weekly now instead of four weekly ..my decision ..but I get bone ache for two out of four weeks and just felt I needed a extra bit of time between . I have had ten now and feel a bit overloaded!
I will try it and see how it goes.
Hope everyone is ok .
Xxxx
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Fantastic news jannette have a lovely holiday 💕x x
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So pleased for you, Janette! Have a brilliant holiday, you deserve it xxx

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Hi Julie D and Helen

 

Thank you so much for your replies about Zometa, I have been drinking all morning in preparation.  I must admit it threw me off balance a bit as I thought it was just an injection and not Iv !  Julie you also answered my other question about why Zometa as Helen had asked the same thing.  

 

Helen I really hope you are starting to pick yourself up again and that this chemo gives the cancer a good kicking :).

 

Janette I am so pleased all that worry is over and whilst I never push for scans as I dread the results well done you, you can go on holiday without the headaches worrying you.  Enjoy xxxx

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Fab news Janette, I can just imagine your relief. All the headaches you should now be getting will be from the extra cocktails you can enjoy on holiday 🍹😉. Have a great time.

Nicky x

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Janette...yippee doh dah day! Fabulous - have a super time away

Helen xxxx

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Corey, I had no pain or pain meds with mine. Just a little pressure when they took samples. FF

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Yahoo Janette!!!!! Now get packing! Have a fabulous time!  FF

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Awww thank you all so much,  my cyber buddies are so important to me! 😘

Hugs Janette xxxx 

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Oh Janette, I  am so very happy for you. Now you can go and really have a great time! Your news has made my day and I'm sitting with a daft grin, great big hugs xx

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Janette well done.love Sharon
X❤
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Great news Janette! Have a lovely holiday. xxx
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Wonderful , wonderful news, now get packing for your lovely holiday xxxxx M

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Oh Janette, that is such wonderful news! You can go on holiday with no worries now! Do enjoy yourselves - I'm sure you will.

 

Hugs and best wishes. Barton.x

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Hello Corey. That sounds like a horrendous day!

 

Re the hysteroscopy - yes, unfornately it was a bit painful. The doc tried without injecting local anaesthetic first though. It was much better after I had the local. It was still a bit uncomfortable (like a very painful period), but of course everyone is different, and you might not feel pain. I hope not. It will probably mean another long day for you, what with all the travelling asxwell as the wait at the hospital.

 

Wishing you all the best.

 

Hugs. Barton.x

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Whoop whoop ...la la la
Let me be the first to celebrate with you and now young lady ..focus on your holiday wardrobe and getting packed .
U can enjoy a few cocktails in Cyprus and lots of rest and relaxation.
So glad that letrozole is doing what it says on the tin.
Xx Carolyn xx👙👡👜👠👓
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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 

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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

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Hi Marie-Louise

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....

best wishes

Helen xx

:-))) 

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Hi Jan

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.

helen

 

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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

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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.

 

Janette, I

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Janice the erubulin only takes about ten mins to go in
I would expect some ladies dont want coldcap so maybe that's why there's no evidence of success..it goes on for half an you before and then for one and half hours after..xxsharon
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Hi Janice well iv only had two erubulin so far and have used coldcap.I'll have to wait to see if it works...i used it on docetaxol chemo which finished in march and didn't lose any hair.to keep my hair helps me to feel more normal as twelve years ago I had fec which took all hair away..anyway I was in hospital with ascites and had it drained then they put me on erubulin..i felt rotten but dont think it was all due to the erubulin.now I just feel tired..there are a few of us on erubulin at the moment if you look through sites ..good luck let us know how you get on❤ sharonx
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Hi funnyface well they said it has to stay in now , the way I see it is one chemo down five to go and so on . I don't find it a problem it's just the fact it gave me a clot.
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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!

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Thanks every one . Barton it was at Exeter it took 3 hrs to get there as a30 was solid traffic and not even moving then 5 hrs in hospital . I was so pleased to get home . Did you find the histerocopy just uncomfortable of was it painful ? Be sooo glad to get it over with. Then the next day back again to see oncologist and if every thing ok chemo . Washed my hair this morning and as I brushed it it came out all over floor so decided it's all coming off later with clippers xx hugs xx
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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

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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

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Good luck for the results, Janette! We are all behind you wishing you all the best.

 

Hugs. Barton.x

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Hello scratch

 

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.

 

Take care.

 

Jan 

 

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Hi Carolyn the actual chemo not to many se just constipation but senacot worked . Soreness in mouth but it passed . Up to Exeter 13th for histerocopy and up again 14th for chemo . Joy of joys xx
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Hiya Corey
Life's a birch isn't it? What have we all done to deserve all this. Picc lines are vulnerable to these things ..think when I had mine back in 2004 I had to take warfarin tablets daily but then every time I cut myself ..almost bled to death !!!
The one thing you have to remember now is they check and double check everything more and so it's best to accept the hystercopy.
Another hospital trip to Exeter for you though.
How is the chemo ?, are you coping with it on.
Hugs xxx
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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

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Hi all feeling fed up as Friday I ended up spending 5 hrs in hospital as I have a blood clot from picc line . Just my luck so having daily injections to thin the blood. Also when I had pet scan it was when I had my period so it picked it up . Was asked to have ultra sound of pelvis which was ok apart from slightly thicker lining of womb so I now have to have s histerocopy a camera inside to get a better look. Worried to death something wrong and really fed up . Nothing's going my way
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Hello Maria
I have denosumab injections not the zometa iv stuff. I guess they work much the same and strengthen the bones. There are lots of lafies here still on zometa so I'm sure they will be reading and hopefully reply .
Either treatment gives the Mets a good kick and protects us from breakage.
Hugs xcc
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Hi Carolyn,

 

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

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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

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Jeanette
I knew u were getting yr knickers in a twist about the mri results as u went all quiet on here ..everybody deals with things differently. Sometimes u need to pull back from it all.
I did post on the scan thread to you but hugs and loads of cyber wishes you are going to be ok and enjoy your holiday.
Xxx
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Morning ladies, sorry I've been a bit quiet this last week, mithered about getting these results from MRI I had on my head last week. Hopefully should get them tomorrow or at least by Thursday.
Go to Cyprus Saturday and feel like I can't get excited about it until I get results!
Hope everyone is keeping well, Carolyn glad the red stuff was flowing nicely today.
Hugs Janette xxx
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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.

 

Hugs. Barton.x

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Carolyn, That's good then! Glad to hear there's still plenty there.
I'll have to dig out a hwb and strap it to my arm as I drive down to the doctor's