72K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

lizcat
Member

Re: Bone mets - please join in

Joanne and Lisa - just to say I completely agree with what Thumbie says and the advice she has given. Hope this is some kind of reassurance.

Thumbie
Member

Re: Bone mets - please join in

Lisa, in my experience the oncologist generally only orders scans if there is new pain or new evidence of disease. I have been having pamidronate (similar to zometa) for over a year but only had further scans when I developed pain. I was originally diagnosed with secondaries after a bone scan. When the bone scan showed suspicious hot spots I had CT and MRI scans of the dodgy areas and CT scans of lungs and liver to check those organs. After that it was some time before I had any further scans, although I had blood tests like your mum. Has your mum had these original checks?
You should ask for a prescription for calcium and vitamin D tablets, I have Adcal D3 prescribed, and as a cancer patient my prescriptions are free of charge and I have an exemption card. Is your mum having other treatment alongside the Zometa? Eg hormone treatment or herceptin depending on her cancer type?

Thumbie
Member

Re: Bone mets - please join in

Hi joanne, I had a similar experience but with exemestane. I was diagnosed with progression less than 12 months after starting on it. Having already had arimidex as treatment for my primary cancer, I am now on letrozole, and keeping my fingers crossed that it works for a long time. I had pain in my right hip 7 years after primary cancer and a year after coming off arimidex, so perhaps the arimidex was doing a good job. I have to wonder when the bone tumours started to develop. I have now had a hip replacement and radiotherapy to hip and spine. You may find orthopaedic surgery and/or radiotherapy might be an option for you. It was very successful for me. There's lots they can throw at this disease and lots of options beyond the first treatment. Good luck.

Lisalauren
Member

Re: Bone mets - please join in

Would any of you know or remember your first check up with oncologist if you were scanned or not. My mum had her first 3 month check today and if it was not for her blood test done earlier that day done for her zometa and the results updated on her file her oncologist would have no blood results or scan , the only thing he could have gone by would be her breast lump which thankfully he said it was a lot softer. My mum is on anatrozole and zometa. She gets very tired and her oncologist puts this down to her illness. He has recommended her to take a calcium and vit.D supplement , anyone know of which ones may be the better ones to buy?
Lastly just a reminder if any of you need travel insurance get in touch with eurotunnel as they offer insurance for anyone with a illness without the high premiums , just remember you will need to get an OK from your doctor/ oncologist to say that you are fit for travel.
All the very best to you all x
joanne130
Member

Re: Bone mets - please join in

Belinda

Thanks for replying, suppose I had just hoped to get some longevity from Letrozole but I'll just have to keep my fingers crossed for whichever treatment I'm put on next, just thought the roller coaster was slowing down a bit but here we go again!

belinda
Member

Re: Bone mets - please join in

Good Luck Liz...x
belinda
Member

Re: Bone mets - please join in

Hi Joanne, just because one treatment may be starting to fail it doesn't mean the next will. One hormonal, Aromasin, never worked for me at all from the very beginning but Arimidex did work well, for a number of years too...good luck..x
Guest user
Not applicable

Re: Bone mets - please join in

Please can you tell me how to get on the fb page.
thank you xxxx
lizcat
Member

Re: Bone mets - please join in

Getting my nerve block done on 21st Dec. Neurosurgeon' s Secretary rang today as she had said she would ask him if he could do it before the original 6-8 weeks the registrar had said.

joanne130
Member

Re: Bone mets - please join in

Hi
I don't post very often but do read all of the thread. I'm looking for a bit of hope I suppose. I was diagnosed in September 2011 and eventually started on Letrozole in February of this year. Things were looking good (treatment wise at least) and tumour markers were reducing until this last lot which have started to increase, coinciding with pain in right hip and leg.
Suppose my question is if Letrzole has failed so quickly what are the chances of other treatments working? I'm scared to be honest I'm a mother of a 4 year old and carer to my mam (we lost my dad back in April this year), and I just don't know if I can cope with this as well.
Thanks
Joanne

na7asha
Member

Re: Bone mets - please join in

Oh nooooooo. My post has disappeared. Booooooo. Got to go shower and see my nephew in his nativity play, yay.

With all my messing I had fortunately copied my ramblings. All out of synch but you get the idea. Xxx
Hey there lovely Boneys. Just taken me 45 mins to catch up on all the comments since my last visit. Didn't realise I'd left it so long.

Anyway, val and anyone else worried about taxol. I'm on my 2nd cycle and it's easy so far. No nausea, no bag of drugs to take home that I always forget to take on time. Steroid pre mess make me feel like a new woman for a couple of days. Find I get hotfans cold flushes which are a steroid se as you get a higher dose for first 3 weeks. Then ware off, but nothing too bad. Stilla managing and enjoying work. So for me, it's great. Just got everything crossed that this time, the treatment works. So taxol ladies, hang on in there and lots of love.
Cromercrab, didn't realise you were worried about your leg, willbog bother you on fb 😉
Sorry I missed chat last night, assume you lit candles... Feel awful but I completely forgot. Bless her, hope her family are doing ok.
Good to catch up with you, I leave it so long next time.
Take care and mahooosive hugs xxxx
na7asha
Member

Re: Bone mets - please join in

Apologies for typos, hope you can work it out. Too hard to edit on an iPad so I give up.
The mahooosive hugs was intended though xxx
scottishlass
Member

Re: Bone mets - please join in

you stil there golightly?

Guest user
Not applicable

Re: Bone mets - please join in

Helllloooo! Is therare hone out there? Are you all ok? Xxxx
Guest user
Not applicable

Re: Bone mets - please join in

Hi,thanks guys I will pm you x I use a silly name on my fb too! Oh Alison, I'm so so sorry you really are having a rough time. Great news about your bloods though....I truly wish you to have some nice stable quiet times. I am certainly not having to cope with as much as you at the moment. I hope you feel well enough to read something absorbing, or watch a good film, or something for a treat...you deserve it so much xxx love to all of you xx katy
scottishlass
Member

Re: Bone mets - please join in

Think I shoud not have printed about Geewhiz as BCC like to check that things like this are correct before printing. Apologies for posting before this was verified by them. I only heard on FB. Val

belinda
Member

Re: Bone mets - please join in

I'm so very sorry to hear geewhiz has passed away. My sincere condolences to her family..x
scottishlass
Member

Re: Bone mets - please join in

If you PM me your real name on FB I will add you to the group golightly to save you waiting. Val

Guest user
Not applicable

Re: Bone mets - please join in

Go lightly - if you PM me your 'proper' name and how to find you on FB I'll befriend you and then invite you. Won't be til Monday tho - about to lose internet access for weekend!!
Nina
Tawny
Member

Re: Bone mets - please join in

Hello everyone. Sorry hear the news about Geewiz, saddens the heart.
I'm having a hell of a time: blood transfusion last Friday and Saturday, picc line this Monday, chemo today, spinal MRI tomorrow, bone scan on Monday, clinical appointment on Thursday, chemo on Friday again and a CT scan the following Monday. It all felt a tad too much yesterday but chemo went well today and am now resigning myself to further prodding a and pokings. Exhausted doesn't describe it but my bloods are up to 9.5 - yay.
Alison x

Guest user
Not applicable

Re: Bone mets - please join in

Hi everyone, I've enjoyed reading the shopping posts....right up my street! I was glad to hear that Katie had got back to work, and val is getting her taxol. So sorry that you have had shocking news about Geewiz. That's just so sad. Hope you are ok. Is the fb a closed group? I think fb would be easier than posting on here! Anyway nothing interesting to post. I've been up to the royal orthopaedic hospital this week for more scans....I might have hip replacement, or maybe not....find out 19 December! Love to all xxx
scottishlass
Member

Re: Bone mets - please join in

Yes I had a mis-spelling of a word that is all.

vercors
Member

Re: Bone mets - please join in

Val, did you edit your post? my answer is displaying before your question. This is really odd.

scottishlass
Member

Re: Bone mets - please join in

Have just read on FB that Geewhiz has passed away. This has come out of the blue ( to me) and I am feeling shocked and upset. Would like to have some more information if anyone had heard from her recently. Val

vercors
Member

Re: Bone mets - please join in

HI Val,
I saw that last night as well and came here to see if anyone had any info but this site was down. It is very sad and seems very sudden but then again I haven't seen any posts from her for a while.
It is very sad indeed.

Katie2002
Member

Re: Bone mets - please join in

Hi Mel - welcome although I bet you wish you weren't part of this exclusive group! I was diagnosed with secondaries in June, six months after initial dx. I had 4xEC and 4xTaxodere. How are you doing on the EC? Your energy will return. I found the tiredness hard to deal with whilst on chemo. When it came to my surgery it seems the chemo hadn't done much to shrink my lump. At the end of chemo the young registrar who looked about 12 took out a tape measure to measure my lump. Very sophisticated!!!! Must be the NHS cutbacks. Don't worry about what happens after chemo. The drs will tailor treatment to you. Everyone seems to be different. Lots of us are on zometa or similar. I have herceptin every 3 weeks. Other people have other drugs - there seem to be a lot about!
Glad they managed to get your sofa in the house. A friend of mine had hers delivered yesterday to find the corner unit they delivered was the wrong way round and she's had to send it back!!!! Typical!!!
I bet your Christmas cards are lovely. I'm sat next to my 6 year old trying to encourage her to write hers. It's like drawing teeth!
Better go - my hubby has just come in and I haven't started his tea yet! Keep smilingxxx

Buffy3
Member

Re: Bone mets - please join in

Hi Mel here, I am still new to all this, posted a couple of weeks ago. I was diagnosed with primary n secondary at the same time back in July. Was initially put on tomoxifen, zoledex and zometa...after 3 months I had more spread aftet bone scan...now on EC chemo...had two so far...just find am exhausted all the time. The onc measured my lump last time...seems it had got smaller. Scans aftet 3rd lot of chemo. I just find all this uncertainty hard. Also I wonder what will happen after chemo..I guess I will find out in due course! On a positive its great to hear all your fab stories about what you have all been doing. My Oh and i ordered new sofas which arrived yesterday. However my old ones originally came in the large window which Ive now had replaced...with smaller windows. I hid in the bedroom while doors were removed including the front ones to get out the old ones. It took two hours and was amusing listening from behind the bedroom door. Any way now have a lovely sofa to relax on. Made a few xmas cards for my niece n nephews...money this year as havent the energy even to amazon!! I hope they like my efforts! Will go to Sainsbobbles soon...oh been shopping but doesnt drive so walks back with everything..so as you can imagine our cupboard is bare. Anyway enough of my ramblings...thank you all. Helps me to keep strong in this mad rollercoaster ride that I feel I am on. Love to all Mel
Katie2002
Member

Re: Bone mets - please join in

Afternoon all!
Your post made me smile Val - good for you treating yourself! You can't beat a bit of retail therapy. Good luck too with the Taxol!
It's blooming freezing here - up in Bolton! It's even tried to snow but it hasn't stuck which will be disappointing for the children. I was even debating whether to get the sledge out for when I picked Alice up from school but it looks like that decision has been made for me.
Pam - did you get to the markets in Manchester? I think they are much better this year. I'm glad they seem to have spread out the food and drink so it's not all at the Town Hall. I went to Manchester Met Uni (the old poly!) Did you go to th real Uni!???
I have been back at work this week - 2 mornings. It was like riding a bike but I am tired!!!! I'm attempting a full day tomorrow. Although yesterday morning I must've been half asleep. It wasn't until 5 to 9 and the school bell was about to go when I thought I was feeling drafty. I'd only been walking around in my dress with the side zip undone!!!! NO one had either noticed or wanted to tell me! Thank goodness I realised before greeting the little darlings!!!! I wouldn't have lived it down. I'm not wearing zips tomorrow!!!!
Everyone at work are being 'over' nice! Which is lovely, don't get me wrong - but I just want people to be normal. No doubt it won't last.
I better go and do some prep for tomorrow. Hope everyone is keeping warm and all treatments are going well.
Love to all xxx

nicky08
Community Champion

Re: Bone mets - please join in

Hi Pam, what a lovely time you've had, just as well considering you're now back into appointments mode 😞
I didn't mean we should move the chit chat, I was just thinking that Val's purchase of two gorgeous bags did qualify for the Gormless thread 😉
After all, we have to ask, one on each arm or for use on alternate days?
Nicky x

Guest user
Not applicable

Re: Bone mets - please join in

Nooo I like having the chit chat on the boney thread and i think it helps new ladies see there is life after a secondary diagnosis.......this is my excuse to adding to it!
After my stable scan I went off on holiday. We went to venice for a few days...then cruised from Venice to Barceolna and then a few days in Barcelona. Venice was fab...no floods, bright blue skys. then Split....warm enough to drink coffee outside and tour Roman remains, day at sea ...wet....drizzle in Naples but able to see sights on bus tour. Long days in Rome and Florence...magnificent but by that atage my feet were awfully sore from the capecitabine and i hobbled around both places....but did it and completed both walking tours. Both places seen in the sun. Then a good a day in aix en province. Finally 4 days in Barcelona. All fab.
Came back appoints all day thurs to sort out capecitabine and with orthopod who wants to leave back well alone for now., zometa infusion fri am, then train to Manchester to catch up with uni friends over weekend....just beginning to think about washing and ironing clothes and Christmas!
Holidays are soo important!

Pamx
Good luck to all the boney ladies
nicky08
Community Champion

Re: Bone mets - please join in

Hi Val
Well done you, for both the retail therapy and getting a date to start Taxol 🙂 I hope the Taxol works wonders and you can enjoy the Christmas period with the family with no extra worries. I must commend you on your spending though, not bad at all if I may say so. I'm hoping from this that you are feeling a bit more energetic and that the transfusion has kicked in at last. How sweet to hear about your Mum keeping your baby shoes, I hope that brought a smile to your face rather than a tear to your eye.
I went shopping yesterday with my Mum to Winchester where there is a lovely traditional style Christmas market set up in the Cloisters. It was nice to wander around but sooo cold, we had even had a sprinkle of snow earlier in the morning but nothing to get too worried about just yet. From vaious market stalls in the town I bought some saucisson for when YD comes back from Paris (so she still feels Frenchified at Christmas!), a Panettone from an organic bakery, some lovely spice and risotto mixes along with a few stocking fillers. Job well done. Question is, should we (including Lucinda) be putting this on the gormless thread?
Warm hugs to all Boney ladies, especially those experiencing more problems.
Nicky x

lucinda
Member

Re: Bone mets - please join in

Val sounds like a bit of really successful retail therapy,I plan on going into Brighton tomorrow-I am thinking og treating us to a Choccywockydoda christmas cake,very naughty and expensive but really wicked.There is also a hat shop in the Lanes where the hats are designed by the students studying fashion,so generally one offs and I really need a hat to keep the other 20 company.Might even buy some more things for the yet to arrive grandchild,due Jan 3rd.
Think having a word with gp is a good idea as you do not want to aggravate anything,it is funny how we manage to find a way to get pain relief,I have to sit upright with my back supported.I recently purchased an electric recliner chair with posture support and it is really great when I get back and rib pain to sit and chill(trouble is I also fall asleep frequently).
I know where you are coming from with clearing the wardrobes.I think when I took all my Mum's clothes to the charity shop they had enough to stock the shop,she loved to wear suits and tailored outfits all with matching accessories and jewellery.Lovely she kept the baby shoes,I have just washed my son's shawl for the new baby and it has come up really well - he is 39 .
Good luck with the chemo and take care of yourself.

L xx

scottishlass
Member

Re: Bone mets - please join in

Well got the phonecall I was waiting patiently for. I start Taxol on Tuesday. So will be running on chemo at the same time as Natacha. ( sounds like petrol when I say "running on"!).
Been out today and treated myself to not ONE but TWO leather handbags and one is by Tula and the other is bt Radley! Posh or what! Plus a lovely large silk/something scarf/shawl in lovely orange shades and will brighten up anything I wear.
Had a walk along part of the city called Stockbridge with my OH as the sun was shining and no snow around but a bit frosty underfoot. Then into Waitrose for foods and all the lovely things to tickly the taste buds. Was in a restaurant a while ago and they had French Crepes ( you can buy them ready made in waitrose though!) and the had banana with fresh cream and a lovely chocolate sauce. Thought I may try them at home. Nice and easy but delicious.
Still having problem with numbness in fingers and thumb and ache up arm. Must go and have a word with my GP to talk about it as it may be made worse when I use elbow crutches. My back also aches after I have been on my feet and the nly way to get any relief is to lie flat on my back.
Went to visit my Dad yesterday and came away with a carload of Mum's jackets and coats and jumpers in yet another wardrobe. My she did like lots of clothes. I must take after her! But 30 smalll empty boxes for rings and jewellry and packets and packets of embroidered hankerchiefs in boxes! But I came across a pair of baby shoes that were mine. She had kept them all this time and I am 62! Hugs to yu al. Val

Guest user
Not applicable

Re: Bone mets - please join in

Cromercrab (sorry, I can't remember your real name)
My leg issues would come and go. Seeing the results of my MRI, my surgeon said that the zimmer frame, suggested by the radiotherapy team, was actually the worst thing for my legs as bending forwards would increase the compression on my spinal cord. So if you have a trapped nerve it could be similar positioning that is causing varying symptoms. Also, I was put on steroids to reduce inflamation, so if your nerve is inflamed that could be make each day different. I hope you get your MRI appt though soon.
Dawn, you are not going mad and yes, I feel that the posts coming up in edit-date order is a fine way to confuse us all.
Sue
dawnhc
Member

Re: Bone mets - please join in

Have just discovered if you edit after posting at a later date, the post is then moved to the date you edit so I have deleted the post as it is irrelevant where it ended up!


Yet another flaw in this amazing site! Or I am going mad.


Dawn

Guest user
Not applicable

Re: Bone mets - please join in

Hi all. Just dropping in.
I've been reading about the spinal stuff with interest. I've developed a problem with my right leg. It won't move as it should.. It takes me a while to mobilise it to walk. When I'm walking it's fine apart from the odd twinge. Onc has booked an MRI to see what might be going on. Getting a bit concerned now. It doesn't hurt in bed. I'm hoping it's something as simple as a trapped nerve. When onc examined me last Monday I couldn't raise my left leg. Random! Now I can, Si I really don't know what's occurring......
swanie
Member

Re: Bone mets - please join in

Good evening
Great that you got that PICC line in Tawny - it will make Friday easier, I really hope it goes well for you. Good luck.
Thanks for your concern Sue - I must confess that my legs giving out on me is a real worry so your post and Isolbel's re surgery is oddly reassuring.

Well onwards and upwards- must go to bed. I had my 8month old grandaughter today, she is called Olive a real smiler _ you forget what hard work the little ones are>

- Good luck with all your treatment
Jacquix

Guest user
Not applicable

Re: Bone mets - please join in

Hi Everyone!
I was recommended to join this thread. I have read through some of the posts and will read them all with time. Such supportive and informative comments. Thank you all xx
Guest user
Not applicable

Re: Bone mets - please join in

Hi Isobel
Thank you for posting that. It is good to hear that the recon on your back has done so well.
I was lucky that I spoke to the breast surgeon's reg first (as I was seeing him anyway) and he sent me straight off for an x-ray and then I had a bine scan and an appt with the onc. My spinal cord compression came on very fast indeed - basically on a Monday morning I walked Amy to school, for the exercise., drove myself to hospital for rads and behaved quite normally. By 2 the next morning, I was struggling to get out of bed! Just over a week later I was in hospital waiting for surgery.
For anyone expecting to need similar spine surgery, I can say that I am healing very well. I no longer wince when my husband drives over a speed hump or corners in the car. Around the house, I only use my crutches for going up and down stairs. I do use them (or the wheel chair) for longer journeys outside, but can see that it won't be for long. Apart from paracetamol, I am only on 1 slow-release morphine twice a day, although I do have some oramorph by the bed, in case I need some in the night. I do still have a strange numb/sensitive feeling round the back of my pelvis, similar to the feeling I had down my arm just after my mx, and I can't bend down (or rather get back up again) or lift anything heavy. This is only 2 and an half weeks post-op, so it is really quite amazing how quickly I am recovering.
I hope everyone else is doing well and that Liz's appt goes well tomorrow and they sort your pain.
lizcat
Member

Re: Bone mets - please join in

Thank you very much for your post Isobel. Really encouraging for anyone who may need surgery for spine mets. It's something I may need at some point if they run out of other options. Seeing neurosurgeon tomorrow to see if he can help with current pain/discomfort.

vercors
Member

Re: Bone mets - please join in

Isobel, Thanks for posting this.I really like to read some positive news. One day at a time.

Guest user
Not applicable

Re: Bone mets - please join in

Hi to all hope everyone is doing ok, what with the weather becoming colder.
This message however, is directed towards Amysmum (Sue) - hope others don't mind.
It's just to say, that I had exactly the same as you. It started with a severe backache, which took a long time to improve. I then began to have funny feelings in my thighs, when I coughed or sneezed and my feet felt odd, as if there were creases in my socks. I was forever pulling at my socks to try to sort them out. My balance then became slightly off, by which I mean, that if I turned suddenly, I would nearly fall over. I went backwards and forwards to the GP, who dished out painkillers ad infinitum, and who blamed the odd feelings in my legs and feet, on me gaining weight...which I hadn't. If anything, I had lost some. Finally, I saw a different GP, who had me whipped into hospital that day. I was on strict bedrest and steroids and finally had an op, where rods and pins were inserted, in order to staboilize my spine. I also had follow-up radiotherapy.
Now for the best bit...that was three years ago, in November 2009. I've had some blips along the way, the major one being a fractured hip in May of this year, but I am very well! My mobility has improved, OK so I'll never run a marathon, but then I never had any intention of doing that anyway!
Well, that's it, just thought you and others might be interested.
Take care everyone and stay well...that's an order!
Isobel
nicky08
Community Champion

Re: Bone mets - please join in

Hi boney ladies
Just dropping in to wish all of you well embarking on new treatments and stablity for all those on current treatments. Ive not been on the forum for a while but have been trying to catch up with all of your posts. I don't think there is any information I can have given to some of the more recent posts but, again, wishing you all well.
Nicky x

swanie
Member

Re: Bone mets - please join in

Hi there
Nina and Golightly - thank you for your comments. I am very optimistic as to the power of rads to help with the pain after rading your posts. I am self-employed so taking time out is tricky, plus as a Podiatrist (feet) I have patients booked so I am compromising and doing 3 half days for the first2 weeks then it is the Christmas week which I close for. I thought I would be able to lurch through half days and oddly having to put on my smily face for the old dears does actually make me feel better.
Tawny - I had a horrible time getting stuff in and out of my veins so had a Hickman line put in (similar to a PICC) it was my best friend - no more needles, chemo wacked in a twice the speed. It was excellent. It felt weird having it put in but did not hurt. As Nina said another hurdle - you can do it We are rooting for you.
Jacquix

Guest user
Not applicable

Re: Bone mets - please join in

So well done missus on getting the PICC line in - really pleased for you - it will make life easier.
when my blood count dropped low it was after they'd identified spread of teh mets in my hips - the chemo nurse said red cells are produced in the big bones like femur and hips, and if the tumours were growing there was less room for cell production. Don't know how accurate that was but the rads shrunk the hip tumours and touch wood for bloods for all 4 cycles of Cap have been Ok - and they'd better be next week cos I'm off on holiday 2 days after I get th results!! But given how good I feel - particularly having got annual travel worldwide insurance for 2 for £112 from Eurotunnel - I think my bloods are OK!!!
Nina
Tawny
Member

Re: Bone mets - please join in

Claire, interesting to read your post. My reading was 7 and I was what is known as 'symptomatic' - quite breathless and very pale. The hospice said they normally transfuse when bloods are 8 or lower.
Anyway, had the picc fitted today. I was having kittens but the staff that treated me were super kind and sympathetic. It wasn't pleasant, but I managed to get through it. Another hurdle completed. Feel exhausted, everything has happened so quickly I haven't had time to draw breath. I have a day free of treatment tomorrow..a lie in is sorely needed.
Thanks to those of you who responded to my plea....chemo beckons at 9am on Friday. Sigh.
Alison x

Guest user
Not applicable

Re: Bone mets - please join in

Hi Jacqui
I recently had 10 rads to T12 (which is just below the ribs).
The radiotherapy itself wasn't too bad. I felt slightly nauseous a couple of times, but that might have been me getting used to the biphosphonates rather than the rads. I did find it a little tiring and it was difficult to remember to moisturise my back (out of sight, out of mind). However, I did get worse nerve pain with it and ended up with the vertebra collapsed completely (and surgery to sort it). I wasn't warned what to look out for with the nerve pain, so didn't alert the team to the problem very early on. I would say, if your legs get significantly worse, you do need to speak up.
Sue
myfanwy18
Member

Re: Bone mets - please join in

Hello boney ladies,
Tawny, I was interested to read your post. I had Taxol over the summer, six lots for nodes in my abdomen, liver as well but, thankfully, it turned out never to have been there. I saw ONC after treatment (Sept I finished) and he said it had been successful. However, when I had my blood test for Zometa last month my Hb count had dropped to 8.7. I asked the doctor who called was this due to my treatment or my illness, he said my illness. I had a blood transfusion and don't know what might happen next. I had a scan last Friday and see ONC on the 13 December so wonder if he'll raise it then. I didn't feel too bad at 8.7 and could continue my phased returned to work so am very lucky in that respect. I know how you feel about going back on to chemo, I would be so sad if I have to do the same after finishing chemo in September and getting back to some sort of normality at work. At the moment I can't even think about it.
Claire x

Guest user
Not applicable

Re: Bone mets - please join in

Nina, that's great advice you have given Alison and I would add that he picc line will help reduce use of needles and protect your veins from the chemo. Hopefully the chemo might not have all the same side effects as before too. I really feel your fear, and hope that posting will have helped you. Lots and lots of love to all of you having a particularly bad time xxx
chris, I didn't know about the antidepressant/ hormone therapy issue. I also would recommend a pharmacist looking into this for you. Also docs have a formulary which they can consult re drug interactions. Definitely right for you toget this sorted......pretty awful of docs etc if they have impacted on your treatment. You probably do need them too...so ...another thing to sort......joy deep joy...like you need another thing
Swannie, re your rads, I don't think it's being unrealistic to take a couple of weeks signed off. Your body will need to rest in between treatments. Sometimes you can feel nauseas and very tired. I had ten fractions last January to my pelvis and I was really tired. It's individual, but I wouldn't have coped with work as well. Some might though! Hope it does the trick for you...takes a little while for the effect to peak, but radiotherapy is amazing and works so well xxxx
Guest user
Not applicable

Re: Bone mets - please join in

Sorry to hear Alison you're struggling. The blood transfusion wil help a lot - you don't realise how washed out you are til you have it and it takes effect and you feel better for it. Thats the good news! The better news is you'll cope with a PICC line fine - you've been thru so much - it's one more hurdle to get over and in the long run it will make things easier for you. I had a Hickman during my primaries and like you I was Scared - very Scared. Looking back it wasn't as bad as the anticipation - you will be a nervous wreck - don't try and hide it or stop the tears - just go with the flow as it were. Sooner than you know it it wil be over. My chemo ward were very good at giving me Lorezapan (a benzo stronger than valium) which helped take the edge off before they approached me with a needle - ask about that - it does help.
I've lost you rpost - I think you said at the hospice and tomorrow - so you don't have to wait long and the hospice staff are truly incredible - I was so scared to go there the first time to see the Pain Man but now I'm used to it and it isn't just for those on their last days - it's for anyone like us with a chronic disease which is treatable but not curable. And if it gets bad, think of how good it is to be NED liver wise right now - thats fantastic!!
Best of luck
Nina