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Looks like it is now on the bone.

19 REPLIES 19
Moneck
Member

Re: Looks like it is now on the bone.

Well I saw my usual Onc. yesterday & he began by asking how I was feeling & any problems. I feel fine, walking lots etc. As he put it my situation is complicated - triple neg with lobular cancer. He then said that he had them look further at the recent CT scans & it is same as last year - NO bone mets. There is a 'condition' with a great long name possibly triggered by the severe infection I had 3 years ago. The tumour markers are down to 600 (over 1,800 last October) while they stay at that level I will not be back on Cap. If neccessary they will drain off the fluid in the abdomen. He will see me again in 6-8 weeks meanwhile to enjoy myself !! My hands are so much better I am back to knitting. I can't stop smiling even when I got caught in a downpour this morning! Smiley Happy Smiley Happy

Thank you all for your support & I wish you well,

Monica

2catlady
Member

Re: Looks like it is now on the bone.

Hi ,Monica,so glad you can see your onc again. That's a weight off your mind.
Enjoy your chemo break and have a fab time with your friends. Make sure you get plenty of hugs too.
I'm sending you a huge hug,Helen xxxxxxxx
Moneck
Member

Re: Looks like it is now on the bone.

I wrote to my usual oncologist explaining how I felt after last appt with other onc. & how I need to know the facts reguarding change of treatment etc. Today a call from one of the secretaries giving me a new appt with my favoured onc. next Friday. Am enjoying the 'chemo break' seeing friends etc. thanks for the support,

Holding U Gently in my thoughts, 

Monica

PS: I have lost the 'ice-pack' in the back sensation so can now enjoy physical hugs!! 

2catlady
Member

Re: Looks like it is now on the bone.

Hi,moneck,so sorry you are having a bad time,god it sounds like my hospital. Treating you as if you aren't there and never listening to you.spmetimes you are just an NHS number on a file to some doctors. Ask your GP tomorrow and see if he/she can shine some light on it.
Sending you a huge hug,Helen xxxx
Moneck
Member

Re: Looks like it is now on the bone.

I am still fairly new to the forum, I have read lots but not posted. 13 years after primary - mas. Fec & rads. Dx last Oct. with triple neg secondary tumour in abdomen pressing on my right ureter which could compromise the kidney. I've done 8 cycles of Cape with sore hands & feet eased by Pliazon. Had ct scan in early April & last week saw a different onc. on the team.

I had hardly sat down before he said that the disease had progressed & I was to stop the Cape. He repeatedly questioned why I wasn't taking Denosumab. I will also take Pyridoxine, Adcal D3 & eyedrops. And will start weekly Pacitaxel in a few weeks. When examing me he took quick look at feet, and briefly asked about pain in back while listening to lungs.

Back in consulting room he only spoke of sideeffects from the new prescriptions. I asked what the tumour markers were - 700 (started at 1,800) still reducing 100 per month. Felt uncertain the next day & rang bcn who tried to allay my fears. Imagine my shock to receive a copy of letter onc. has sent to GP - retroperitoneal disease & bone mets. He also states "she denies back pain" - I have no back pain & could have told him I had just been down to the Pyrenees on trains for 4 very enjoyable days with friends. Does he think it is in the spine?  Why not another bone sacn?

Last Sept usual onc. said ct showed changes but bone scan showed all clear, changes could be due to critical sepsis 3 yrs ago - nearly lost a leg. Letter also states that my feet are particularly bad - funny as I have no blisters & foot clinic nurse very pleased.

I hit rock bottom!! Have chatted to friend on local support group & she agrees that I should ask/beg to go back to previous onc. even if I have to wait longer to see him. Will see GP tomorrow as need bp check, thankfully not doing cholesterol test - my taste for sweet things has returned so celebrated with chocolate!!

 

roxy12
Member

Re: Looks like it is now on the bone.

Angela, that's great news! Congratulations! Hope you stay well for a very long time. Love Sheila. Xx

Penny47
Member

Re: Looks like it is now on the bone.

Angela this is lovely this sun but I see that it is twice as strong further South.    Still got sore radiotherapped skin so not able to Bare All as I would like. Ah well, mustn't grumble.

pam01
Member

Re: Looks like it is now on the bone.

Hi everyone. Just thought i would post re my own somewhat similar experience......As many of you know i have been taking capecitabine since feb 2012. Markers have been stable. In Oct 2013 whilst on holiday in Granada I fell onto an outstretched right hand and hurt my shoulder. initially i could bearly move my arm, it was bruised and hurta lot! Anyway it gradually improved...and I had another holiday booked and didnt want to mention it cos I would have had to report it to travel insurance co if anything was in my notes!  It gota lot better but began to throb at night...so in Jan I mentioned it. An XR was reported as "suggestive of a met and pathological fracture" and I was referred to orthopaedics. Orthopaedics thought the XR looked unusual but not completely like a met and decided to XR again  in 6 weeks. My onc said wouldnt give radiotherapy until certain as to what it was. In the meantime a repeat MRI of my spine was stable (yahay!). My arm continued to improve. A repeat XR showed a healed fracture and the conclusion was no evidence of a secondary but a "normal fracture". Markers still stable.

I have just returned from 5 days in Palma Majorca.....had a great holiday (was just about to type break but thought the better of it!)....fingers crossed that capecitabine continues to work...and brilliant news that you have ahd simoilar good news!.Pamx

elliedog
Member

Re: Looks like it is now on the bone.

Helen sounds like you've had your share of up and down scans. I know scans can be difficult to read but maybe if they also listened to your symptoms it might give them a better idea. BTW you rant away.
Thanks Penny Im not surprised there is a fracture on a rib after the way they tugged me around during my mx. How are you, enjoying the sunshine I hope.xx
Penny47
Member

Re: Looks like it is now on the bone.

Angela this seems to me to be better news than expected.  It is possible to break a rib and it not show up on the x-ray- it happened to me.  They found 3 fractures after I fell and landed heavily on a set of stone steps while carrying a basket of laundry. 9 years later, while investigating back pain, they found 6 more healed fractures because they took a different angle on the Xray.  The Orthopaedic surgeon ordered this set of xrays and I guess he had his suspicions. 

 

Also, we had a friend who played rugby who broke 2 ribs turning over in bed.  At least that was his story!

2catlady
Member

Re: Looks like it is now on the bone.

Fantastic news Angela xxxxxx yes, I know what you mean . My CT scan showed mets in spine but no where else,my bone scan showed NO mets in spine but in ribs! MRI showed mets in pelvis,go figure!
Hopefully I'll get a scan after June as it will be a year since last one. Onc who had never looked at scan results said oh that's interesting I'm not sure what scan to give you!?! I'll join you for a rant too.
Anyway ,I hope you are dancing on the tables celebrating your news,you go girl!
Huge hugs,Helen xxx
elliedog
Member

Re: Looks like it is now on the bone.

Recieved phone call from hospital with scan results today.After being told that ct scan showed probably a met on the rib the bone scan is now showing that it is probably a healing fracture. I did point out that it is my mx side and it has felt delicate since mx and then rads and have always wondered if damaged came from my mx but recently it has started to feel better which might explain the healing. So consultants are now going to get together and decide weather to treat it as a met or not or just wait and scan again in 3 months.Rest of the bones are clear.Either way they say it is doable and the way I look at it is if it is a met then its healing itself without the bone juice and maybe the Herceptin and Pertuzumab are doing a good job.Im looking at this as good news but I am so fed up with different scan consultants reading scans in different ways, do they not realise the stress these scans give us.News and rant over ladies, thanks for listening.xx
elliedog
Member

Re: Looks like it is now on the bone.

Thanks for all the replies ladies. I am grateful that my liver is now clear and have no further spread to other organs but I just think I am feeling a little tired with it all.I have my bone scan tommorrow then I just hope they will leave me alone for a while. I am still a little confused why the Herceptin and Pertuzumab haven't dealt with the bone which in a way makes me think the bone scan tommorrow will say they have got it wrong.I can hope just thought i would be one of the lucky ones that had mets in one place.Thanks again ladies xx
SDP
Member

Re: Looks like it is now on the bone.

Hi! 

I don't think it helps that everyone's oncologists describes things differently to us. It sounds like I am having the same treatment as you but my original secondary diagnosis was liver, lung and bone. After my last scan, my onc told me that my lungs were 'clear' and that my bones 'had healed' but there is something 'almost unrecognisable' still in my liver after treatment?  When I spoke to him he said I would continue on herceptin and pertuzumab and that there are various things they can do once it stops working. The main things he mentioned to me were TDM1 and Cap. Then, I received my letter that goes to my GP and the treatment he chose to mention was an option to go on Letrozole and because of my ages combine it with Zoladex. He goes on to say that Zoladex compromises the life of young individuals and compromises skeletal health?  Great-  Am fairly sure that it was Zoladex injections I was given when I had treatment for my primary so what damage did that do?  I have been on Denosumab this time which he says will help and they always refer to it as 'the bone strengthener injection'.  Not sure any of that is helpful to you at all - I think I just talked about myself!

If my research nurse said that I would be here for many years to come then I think I would throw my arms around her (then run ...quickly)!  It can only be a good thing and they always er on the side of caution I reckon so many years is many many many years and by then they will have come up with something else so many many many many years!  Good luck with your scan xx

Newyork
Member

Re: Looks like it is now on the bone.

Hi understandably it sounds like a very confusing time for you right now sorry to hear the possible news. I have had bone mets for 3.5 years now and the more I learn about it all the more confused I get and it just leaves me feeling that no one really knows!!!!

I have been on desonamb almost a year and don't think I have any side effects and it's very easily given by injection. I have had growth, shrinkage and stability in my bones over the years whereas my breast lumps could be classified as NED as they come and go. Bone disease seems to be very different from other areas of disease.

I don't think I have answered your question very well sorry but hopefully gives you a little more context.

Charlotte

busyanne
Member

Re: Looks like it is now on the bone.

Hi just wondered why you needed scans.  I asked my oncologist if I would get scans when I finished treatment but was told no.  Like you I am on Herceptin so wondered why the treatment had not stopped spread to bones.

Sam_BCC
Member

Re: Looks like it is now on the bone.

Hi elliedog

 

It sounds like you're having a tough time at the moment.  As skinnyminx has mentioned do give the BCC helpline a call on 0808 800 6000.  Here you can talk through any questions and concerns you may have with a member of staff who will offer you a listening ear as well as emotional support and practical information.  Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator 

skinnyminx
Member

Re: Looks like it is now on the bone.

Denosumab and zometa are not similar - see links below from this website

 

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/targeted-therapy...

 

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...

 

It sounds like you still have lots of questions - is your oncologist or specialist nurse available to explain things further?  Or one of the nurses on the Macmillan or Breast Cancer Care helpline?

2catlady
Member

Re: Looks like it is now on the bone.

Hi,Angela,I'm not sure what denosumab is as I'm on zometa for bones,but it may be similar ,and they are very good at their job. I don't know how ladies get NED with bones,I was under the impression that even if you are NED it's still in your blood lurking but I may be wrong. But it can be managed in bones for years so u can bug your nurse for many years to come .
Huge hugs to you ,Helen xxxxxx
elliedog
Member

Looks like it is now on the bone.

Hi ladies. I posted yesterday about my scan results. Liver and organs clear however something showing on one of my ribs. I know the organs being clear is good news and I am grateful however after only finishing docetaxol in september how on earth can I have it on the rib so soon (last scan was clear). Spoke to my research nurse today and she said because of the wording from the ct scan consultant it probably is cancer but we will know for sure after the bone scan on friday.They said they are looking at putting me on denosumab which I believe is given every 4 weeks by injection.This she said should contain the cancer and it wont necessarily spread further. I will continue with herceptin and pertuzumab because she said at the moment they are keeping the rest of the body clear.What I dont understand is how do some ladies with liver and bone mets manage to get to NED or no activity showing on the bone. Will I manage to do this on this drug. I have yet again no symptoms and no pain so I again never saw this coming.Sorry to go on again everyone I suppose I just need to know if this will be the right treament and I can trust my research nurse when she says I am going to be here for many years bugging her ha ha xx