Dear Sarah,
Pleased to hear you are doing well and seem bright today.
Keep up with the excercises and the good recovering. 
To the lady above, i donāt know about this but i am sure you will get a responce very soon from someone on here.
With my best,
Liz xx
Hello everyone.
I havenāt posted for a while. It was interesting reading about the Chinese fungi complimentary medicine. I have been taking a capsule form of mushroom compound I buy from my local health food store as I read sometime ago it can be quite good for you. When I had a blood test recently they said my immune system was slightly above normal, apparently this compounds is supposed to boost it.
Is it just me or does everyone find seeing their oncologist a bit depressing. He didnāt say anything particularly bad but I saw him Tuesday and it really has made me feel a bit low all week. I had treatment, Zometa on Wednesday. I felt so happy and positive before but now I feel quite low.
Another thing that has been on my mind is that he said my PET/CT scan showed a 2.23 low grade spot in my back. What does that mean? Does anyone know what the grades mean for these scans?
For a moment there I thought I was ok, clear, but now know Iām obviously not. Perhaps Iāve just been avoiding the truth.
Myfanwy x
Hi everyone,
Cromer good news that the primary has gone.
Val it sounds like you continue to make a good recovery from your op, try and take it easy.
My onc has decided to stop the bisphosphonate as he said Iāve been on them for nearly 3 years and they can cause kidney damage and the bone mets are a lot better. I am a bit ambivalent about this decision, on the one hand its good that he is thinking longer term but I also feel a bit vulnerable.
I am 46 today, so celebrating by going to a 2 star mitchelin restaurant.
AlexD
Hi Alex,
I asked my oncologist a similar question, how long will I be on zometa, he said he likes to keep people on it for 12 months and then swap to oral. He said my whole skeleton was at risk otherwise which didnāt fill me with confidence, the thought those bloody little cancer cells were just waiting for their chance. Did you have oral or drip? I can imagine after three years the thought of any major change is not necessarily welcome, Iāve only been on it a year and any change seems quite frightening.
Iām having another PET/CT scan in February. One minute Iām super positive, it will be fine, the next, not. Itās just wanting it to end (the illness)/go away but knowing it wonāt. Even my oncologist said, in one of his lighter moments, weāll be treating you for year and years and years! Oh what joy, less hope they find a cure!
I know I sound a bit ungrateful as there are a lot of you on this site who cope brilliantly with a lot worse, Iām just feeling pretty pissed off with it all. I feel well and donāt like someone telling me Iām not I suppose. There, toys out the pram!!
Love Myfanwy
Myfanwy
I donāt know if this will help or not but I have been on Biphosphonates of one kind or another for over 12 years now.
I started with Pamidronate then when Zolidronate came on the scene they put me on that. Pamidronate took a couple of hours to infuse so the change to Zolidronate freed up the chairs/beds and made my stay in the ward shorter. I first came across Zolidronate when I was on holiday in Cornwall. I managed to arrange to have my treatment down there to save cutting the holiday short.
When Bondronate came into being I went on to that for a while and found the tablets easier especially as I didnāt need to visit the hospital so often. This can be a good thing as well as a bad thing because if you attend the ward each month you can ask the nurses or doctors about anything that is worrying you or you want to ask about.
But when I was in discomfort before I had my hip/thigh operation I found the tablets to be less convenient as I couldnāt take my painkillers as soon as I got up, as you have to wait a while before you can take other meds when on Bondronate tablets.
But because the drugs linger in your bones for a long time it is not a disaster to miss taking Biphosphonates for a spell, or so I was informed anyway.I think you can change form one to another quite easily if you ask. It depends what suits YOU best.
Hope this is helpful. Love Val
Alex I am really surprised your onc has said he is going to stop your bisphos. Are you still on pamidronate? Perhaps you should ask him if any of your tests are showing that it is affecting your kidneys. I thought at first maybe you just had the one hotspot - but I think you have it throughout your spine. When I was dx with bone mets in 2002 they were extensive, and included affecting all my spine. I have been on bisphos without a break since then. First with pamidronate, then for a short while the oral one, back to pamidronate, then the last couple of years zometa.
Has anyone else on the thread had their bisphos stopped (I feel a poll coming on). Itās great he is thinking of any potential problems to your kidneys but its like telling someone you arenāt going to put them on chemo anymore cos it might affect their brain!!! (chemo brain) joking there, but maybe like tamoxifen because it might cause ovarian cancer. It just doesnāt make any sense to me - am I alone in thinking this.
Sorry alex I have gone on a bit. HAPPY BIRTHDAY and I hopeyou are enjoying your meal.
Dawn
xx
I attended the Optician and the area is fine behind my eye. He did confirm I have a āfloaterā and he told me it will remain there. If I get a lot more or have flashes in my eye I have to go back to him as soon as possible as it could be a sign of a detached retina. But I am glad there is nothing nasty behind my eye.
I had my Zolidronate and have been booked in for next week for two units of blood.
She weighed me and said I had lost a lot of weight since last month. I have lost around 3 kilos. She wants me to eat more even although I am not hungry. If I loose any more weight by next month they will have to have a look at why I am. But I feel better for it and although I donāt eat huge portions anymore we do eat good food every day. I am still a healthy 10st 10lbsā¦or as she told me 68.4. Anyone had weightloss and what did they say about it? My HB is 8.5 but I have gone off red wineā¦preferring a G and T or a glass of fizzy white now. Perhaps my previous intake of red wine was so much that it makes a difference to weight and HB.
Seriously i am not concerned about it but would be interested to see if anyone else has had this ( from my bone mets friends). Love to all, Val
HAPPY BIRTHDAY ALEX. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Hello all,
Re bisphosphonates: I have had Zometa since my bone mets were diagnoses in January 2010, BUT I donāt have it continuously. My oncologist prefers to give a course of three weekly infusions, but then have a break before resuming again later. His argument is that this is a very strong drug, and the effects last well enough to cover the break, and having breaks in the treatment reduces the likelihood of necrosis of the jaw.
Interesting how different oncologists have different approaches.
J x
Hi all - my onc stopped my Bondronat for a few weeks last year, as I was pretty unwell and unable to eat anything - as it happens, this was down to a bad reaction to some diabetes meds, rather than my BC meds, and as it also happens I DO have some kidney damage, but opinion seems to be this is from the diabetes. My onc reassured me that bisphosphonates can be found in our bones for a very long time if we stop taking them, but I was happy to start again, as I was concerned about keeping my extensive bone mets stable. And yes, J, it is interesting to see the many different approaches our oncs have, even when, like you and me, we go to the same hospital! xx
Hi
Dinner last night was expensive but fabulous. I really enjoyed it.
Dawn, yes it is the pamidronate that has been stopped. In 2008, I was told by a registrar that my bone mets were extensive. When I looked at my MRI scan earlier this year, I could see a dark patch in my neck, another half way down my back and a third patch in my hip. The dark patches are a lot smaller now and I guess that is down to the drug treatment. I didnāt think the bones mets looked too bad but I am not a medical person.
Myfanwy, this disease is like riding an emotional roller coaster. I have continued to feel well and at times I have think that maybe I have been misdiagnosed. The rational side of me knows that this is not the case. I bumped into a colleague in Town yesturday and she said āgoodness you look well, in fact you now look better than before you were diagnosed with a serious illnessā. She said this as she was sucking on a fag!! Sometimes it just seems a bit unfair.
I will see how it goes minus the pamidronate. On the upside treatment will be a lot quicker as herceptin is only half an hour.
Just eaten a birthday cup cake with a cup of tea.
Have a good weekend everyone.
AlexD
Hi everyone
Happy Birthday for Yesterday Alex, you are a similar age to me as I am 46 at Christmas. Glad you enjoyed your meal. I met one of my Dadās friends in town yesterday and he hasnāt seen me since my I thought my primary was behind me. He commented. āyou look fantastic, it is so good to see you looking so well, now youāve ārecoveredā!ā I couldnāt resist telling him about my bone, liver lung and brain progression! Poor man he looked close to tears! but I do look well, it is so hard to understand that this bloody cancer is rampaging all around inside, but outwardly we are the same.
Myfanwy - sorry donāt understand the 2.23! but surely the words ālow gradeā accompanying it sound positive?
Truffle shuffle sorry havenāt heard of that blood test. try not to google what you donāt know about - it can led to false information and panic (says somebody who keeps scaring herself doing so!)
With regard to stopping bisphosphonates, I was of the opinion that I would stay on these indefinitely, I have 3 weekly zometa, it was 4 weekly before I went onto Xeloda. One interesting thing was when I had my femur replaced the surgeon commented on how tough my bone was to cut and said āthose bisphosphonates have really strengthened your bones!ā
Have a good weekend all xx
Hi,
I can hardly keep up with the posts on this thread!! So, forgive me if I missed something.
Truffle shuffle: I think what you are referring to is shortened to āAlk Phosā on mine. I just had a look at it. The normal range on mine says 26-120. I do remember the nurses told me that different labs have slightly different normal range anyway, so donāt panic if yours is just outside the normal range. Whatās important is to keep an eye on the trend.
Myfanwy, I think the 2.23 is the value of SUV. No idea what it stands for, but itās a measurement they use to see how active the cancer is. The higher the value, the more active it is, and the worse it is. My highest has been over 6. So, I can see why 2.23 is considered to be ālow gradeā. Not sure whether thatās correct.
Alex, on bisphosphonate. Iāve never stopped mine since I started in Aug, 2009. I had Zometa every 4 month, then every 3 month and now on every 6 month. There was a serious discussion whether I should switch to tablet form because I had a tooth infection and needed dental treatment, also worried about the jaw problem. But after a long pose and some hard thinking, my onc has decided for me to stay on the IV Zometa because he claims that itās more effective than the tablet form. So, I ended up having it every 6 month.
Everyone else I havenāt mentioned by name. Good to hear from you all. Have a nice weekend.
Take care xxx
oh thank you, thank you miyu
can breath a little easier now, what a differene this site makes, will still go for the blood tests, as you say to keep an eye on the trend
take care all xx
Hi all, Iāve been on continuous bisphosphonates since 2003. Had several years of pamidronate and then I switched to Ibandronate. Iāve had many years of no detectable bone mets activity and my bones are in better shape than they were in 2003. But adding to the thread as I thought bisphosphonates also protected us from hypercalcaemia? Iām no expert though so please tell me if Iām talking rubbish. It wouldnāt be the first time! My understanding is switching to tablets, which I get via my GP, then takes the cost away from the hospital so if anyone, Alex, feels itās a cost issue I can only add I donāt suffer any side effects from taking the tablets. x
PS hope you enjoyed your birthday Alex. x
Belinda
I think you are right, they do protect against hypercalcaemia- too much calcium in the body. When first diagnosed with bone mets, I read up on if they could actually kill you,if there was no other spread (sorry great topic for a relaxing Sunday morning - but at that stage I needed to know!!) Iām sure I read (nearly 2 years ago, so my memory might not have retained this correctly) that if there are extensive untreated bonemets(by this I guess they mean not on bisphosphonates) , too much calcium can released into the body, as the bones ābreak downā and can lead to coma ā¦and so on! Donāt panic!!! we are all getting bisphosphonates!
This is also why many people are given adcal or calceous, because the bisphosphonates do lower the level of calciumā¦too much is badā¦too little is bad! Oh nothing is ever simple with our treatments !!
Hi All,
Itās so comforting to read every ones comments andt o pick your brains and gain from experience. I can relate to feeling well and all the comments that I get about looking well, some times I think itās a bad drweam and i will wake up and it will all be over. No, I know it wonāt!!! Again thanks
Love to all
Trash aka Rosie xx
Hi Nicky, your Dadās friend is right, looking at your pic you do look really well. I like being told I look well but then itās hard to make (some) understand this is serious. I think my brother thinks Iām a bit of a hypochondriac. Hope you donāt have too many side effects from the WBR. Yes thatās my understanding of bisphosphonates as well. Like you I needed to know and I think bone mets only are sometimes seen as stage 3 and 3 quarters. Hi to allā¦x
Hi all,
Nicky and Belinda - that is my understanding too. Itās the subsequent effects of the bone mets rather than the actual mets themselves that cause the major damage and death apparently.
Also with bone mets you have to be very aware of metastatic spinal cord compression (MSCC). Basically, watch out for pain in legs/numbness/tingling as this can be a sign of the spine collapsing and putting pressure on the nerves etc, which can then lead to paralysis and hypercalcaemia and comaā¦Sorry to be so cheery !!! My onc gave me a leaflet last time I saw her as they seem to be āpromotingā it round here and raise awareness amongst not only patients but also GPs etc. The idea is that if you have bone mets and get any of these symptoms (plus incontinence etcā¦oh joy) and see any medical professional at GPs or say A&E, you show them the leaflet to make them aware of the implications of missing it or dismissing us as hypochondriacs.
Anyway, many apologies for depressing you all - sorry. On the plus side, Iāve been living with spinal and rib mets for over 4 yrs now and am managing to have a great time for the most part and remain more or less stable.
Good luck to everyone, Liz
Well I donāt know what I have done but my ribs are painful on one side and have been all weekend. My OH has stopped me trying to do things I want to do, simple stuff and tells me to rest! Then he tells me to get up as the cats need feeding! Arenāt men contrary! How come on Monday when I saw the Consultants I never felt better and told them so and since then I have been told I need blood transfusions and have aches and pains all over. Is it in my mind? Oh the bliss of bone mets. Only you lovely ladies will understand. Love to all, Val
Hi Val
Yeh, it is us ladies who do understand, these roller coaster rides that we are on.Completely surreal at times .
I hope that this sudden change for you is a temporary blip cos I have been following your progress since your op and been pleased that it has all gone so well. Why are they saying that you need a blood transfusion?
As for the cats, give them a stroke from me and I send you my best wishes.
Esha