Hi everyone. sorry to be a bit negative but I'm feeling really down at the moment. Went to see Orthopaedic chap today about my thumb because 2 oncologists and 1 radiographer were quite convinced that the pain is nothing to do with my bone mets. and more likely to be a returning of the trigger thumb I had diagnosed, and successfully treated in feb (before I knew I had bone mets). Feeling is different this time and specialist decided that my hand needed an X-ray which shows up something on the bone, so now waiting for MRI scan appointment. All sorts of questions:
1) was the original trigger thumb diagnosis actually wrong and it was cancer all along?
2) could the cortisone injection I had to treat the triggering have someone "encouraged" the cancer to go into that area?
3) Why is everyone so sure it can't be another bone met - what is it then?
4) And I know the answer to this one: should I just try to relax and not worry and wait for MRI result?
PS most of the time I'm really thankful for my life and the good things I have. I think thanksgiving day is one of America's better ideas 🙂
Thank you Bon and Moijan! We are going to my daughter's FIL. He is about 2 1/2 hrs away.I work tomorrow but I'm making a turkey and all the sides on Saturday.I love having the left overs for a few days. I'm trying to be good though. I'm down 95 lbs. and would love to make the 100 lb mark. We are about ready to leave and I just went to put on my dress coat. OMG, I can't wear it.It's so big the sleeves are hanging past my finger tips.Not to mention I would need to tie the waist with a rope to cinch it in. It's hysterical. Guess I will be wearing a fleece jacket. Hubby bought me a new ski jacket type coat for Christmas and said I can have it if I need it, but I'm trying to wait. I never gave my dress coat a thought. I will have to look for one on sale. FF
Yes FF, so do I. Love to you.
Bon, have pm'd you xx
best wishes to everyone...btw, I've started carrying the blue strepsils around in my handbag now as everyone I meet seems to be coughing and spluttering..went to see my go today and the poor receptionist couldn't speak..said there were loads of staff off with it.
i tend to carry' first defence' around in my bag always too as it does clot any bugs which reach the nose and stop them multiplying.... has worked for me for about 16 years....only get colds when I forget to squirt it into the sides of my nostrils,.... well worth a try.
love and best wishes
Silrata, When I had ny scan in Aug my Inc said that it mentioned an enlarged lymph node above my collar bone. She said she looked at my scan herself and didn't really notice it. I was freaked but didn't want to ask questions. When I had my scan results 2 weeks ago she didn't mention it and I decided not to ask. She also didn't elaborate on my scan as much as she usually does. I kind of didn't ask since it is holiday time and granddaughter to arrive in Jan.My next appt and scan is in Feb. I will ask more then! FF
i understand how scary this is for you. The only thing I would say, is that Consultant Oncs are, by the time we see them, pretty experienced physicians, and altho oncs can get things wrong....I think that if he were certain it was due to bc he would hopefully act to treat them....also, if they are painful, that would sound like they could be due to infection...let's hope so. Have you checked your temp?
nowadays, these very expensive pet scans can pick up cancer much more expertly than before and with any luck it's an infection. Yes googling can be very scary...and make things sound definite.....I did that in the summer, thinking I'd got skin mets round the scar, but they turned out to be from the rads I'd had yonks ago.
very best wishes for some good news.
I really don’t know anything about this Srilata but just as a suggestion, did you have any bloods done? Only with infection often your white cell count will be raised. Not saying if it isn’t it isn’t infection but it is an indicator. Sorry I can’t be of more help. Have you tried asking your breast care nurse? That said, ones I encounter never offer me much support! Or your GP? Hope you get things sorted soon. Kxx
Hi Juma, believe it or not, oncs are often very pleased when patients seek a second opinion...the job carries a load of decision making responsibility and they welcome patients just exploring wether there are other options.
just to say tho, Cape IS a very effective drug and if you look on the 'Capecitabine your top tips please' thread, you will find that some people, like Barton. Have had their bc controlled on it for a long time. I had it for about 21months before having to change but there are some who find it works much longer. You are also fairly needle free as it's a tablet.
best wishes and good luck
''see how well you managed her!.. yes it's very unheard of for that to happen......maybe she has had her own troubles (been wrapped up in them)and your feedback gave her just the kick in the *R** she needed
I think you might find she is very different now.....hopefully. I realise you probably feel a bit awkward in seeing her after your 'frank feedback' but it could be a good idea to give her one more chance before changing.....I know doctors can be missing the rapport gene....but you could change and then find your new onc is worse in some other way......just a thought.
i know the Christie is excellent and loads of oncs, but In your place, as you say, I'd give her another chance...it is really very hard changing and a lot of internal stress - I have a feeling she may now turn out to be very responsive.....they worry about getting complained about .
best of luck
Hi Juma, I am interested to read your post because I was told I had a spread to the lung following a ct scan. I was in a lot of pain in my hips, shoulder, could barely move my arm. So I got an opinion from a different hospital who looked at the same scan and said no lung spread but extensive bone mets. I got a gp to refer me to that hospital where I have had a lot of radiotherapy to save my spinal cord. I don't want to mention the names of the hospitals just to answer your question-for me it was the best move I have ever made.
Oh and Rosie,
try setting out all your questions on paper or your iPad, you can then hand it over. I'd also take a advocate with me...a hubby, friend etc to note down replies,xx
You know what Rosie, well done! I changed my surgeon because his bedside manner was appalling.
i found it a relief, but also a bit stressful because I wondered if the next guy would then worry that I would complain about him! However, the surgery bit passes quickly and now I'm under a lovely onc and I guess they know too about the change, but it's about 16 years ago.... so I may have lived it down!
As you have tackled your doctor, you might find she is completely different next time...you could go along and just see...are there loads of hospitals near you? I mean maybe do a bit of research first before acting.
in the south we have quite a few options, but I still asked a senior nurse friend who worked in the field and she recommended my new surgeon as she had heard from quite a few ladies, just how very nice he was....and he was too. Sadly he died a few years after that.
best of luck with it xx
And you ff, hope you're improving.my mum does armchair aerobics at her home, maybe your people could try that, not too taxing on the back.
Thanks Bousy good to hear that, mine was in 10 vertebrae so I shall try to stop feeling so anxious for 2 weeks at least. Thanks for replying. Hugs
I had rads to L2 of spine last Christmas and was told 8 weeks for pain to go and it was 8 weeks exactly. Hasn’t recurred since. Good luck , Hope pain goes.
Hi there, has anyone had radiotherapy to thoracic spine, I finished this treatment 6 weeks ago and am in more pain now than I was just after. Am on painkillers but getting very anxious that itshould be better by now.
Hello, ff, I am glad to hear you haven't got compression fractures, but it still leaves the mystery of what is causing your pain. I do hope your pain is sorted out soon and proves to be nothing sinister.
Carolyn, I'm still going to work. I missed 2 days when it was real bad and last Friday when the ulcers were bad. Not sure if they were from meds or a virus. I'm just careful what I'm doing at work. I have limited the active activities. No balloon volleyball, parachute or waving ribbons and ties. Lol as simple as these sound in involves a lot of twisting and me bending to pick up a ball every few seconds. I'm going to start putting them back in the program, but for less time. I need to build myself back up, but not til I get my MRI. FF
Thanks Silrata and Barton, I have improved over the last few days. I have kept moving but being careful what I do. No stretching or twisting! X-Ray showed no fracture. CT said no changes but was compared to the x-ray. Should have been compared to previous CT! Having an MRI on the 28th. Possible bone scan after that. I feel it could even be a small change that might have out pressure back there. Before I got real bad off and on I had burning feeling there sometimes.
I know not everything shows up on scans.When I first started with mets I had a ton of post nasal drip, coughing from it, and this weird sneeze. If I was active I would clog up so much I would get sick. The sneeze I had would start as a tickle in my throat and I would sneeze out my mouth not my nose. I'm not exaggerating! I could sneeze a 100 times a day. Onc told me he didn't know what was going on but that the lung mets couldn't cause this. I read on-line that lung mets can cause post nasal drip. I went through this for 7 years until they decided I needed radiation bc a tumor had almost closed off my bronchus. After about a week if radiation to my bronchus the lis t nasal drip and sneeze were gone! It's been 5 years! My onc said the radiation couldn't have fixed it. Radiologist said she doesn't know what it could have done but maybe it did. Lol! I know it did!! I don't know how either but how else did it get fixed! So, I believe we are each unique and these drs. don't know everything.Test don't show everything either. FF
Hello Srilata, I, too, have had several compression fractures!
FF, the pain was awful! Muscle spasms every time I moved and I couldn't lie down to sleep (I couldn't get up again if I laid down!). I slept sitting up for about 5months. After a hospital visit for not being able to get up off the GP's table (where I went for back pain), I was told it was just muscle pain and was not given an Xray. A visit to my Onc a couple of weeks later, and she offered an Xray, which showed compression fractures. Just sitting in a car was torture - especially going over any kind of road bump! So house-bound for several weeks. I was told to keep moving as much as possible, and I'm sure that has helped in the long run, although very painful in the short term.
Hugs, and best wishes. Barton.x
Kate, yes, magnesium. I also sometimes eat a banana at bedtime...this has magnesium in and can help sleep.
Thank you so much for your reply Kirby. Yes the dreaded head tilt. Amazing how such a simple thing can ruin your day. xx
Rant away Benten. I increasingly find myself avoidng meeting new people as my chemo for primary BC nearly 5 years ago now left me with massive bald patches and I can almost hear people itching to ask. When they don't ask I feel like it's there in the background all the time and when they do ask and I tell them I get the dreaded sympathetic head tilt. Aaaaaaaaaaaaargh. I so wish I didn't look like a cancer patient as a lot of the time I feel OK (if knackered) and I get a jolt when I realise people are looking at me with THAT look. Thank goodness after 2 years of secondaries my close friends and family have all got used to me and we have all got past it.
As Sartre said "hell is other people"
Good Evening Ladies. It is now six months since my diagnosis. I have really stuggled at times and have been to some very dark places. I know eveybody has been the same. In the past few weeks I have started to feel better. I can be plunged back into dispair by the slightest of things but can also have hours when I don't even think about cancer. I am working, enjoying my usual activities and trying to keep everything as normal as possible. Looking forward to the kids coming home for Christmas and the various nights out. Physically if I hadn't been told I had cancer I wouldn't know. Had a doctors appointment on Friday last week about a totally uncancer problem, It was my first GP appointment since diagnosis. Wish I had never gone. All she kept talking about was CANCER and how sorry she was. If she mentioned it once she said it a dozen times. Felt like yelling' I'm not ----ing dead yet'. This has totally thrown me back into a bad place. I ended up reassuring her that I was okay. How do you deal with peoples reactions? Just grabbed my perscription and ran. Rant over. Sorry.
I have always been led to believe that calcium and magnesium go together and that magnesium is very important for bone health, especially as we get older. I always suffered with severe headaches/migraines and it was only after seeing a herbalist, who could tell instantly my magnesium was low and it was severely low, and I started taking supplements that they improved. My mum had been taking me to our GP since I was 10 years old, I’d been sent for glasses (there was nothing wrong with my eyesight but gave me glasses to magnify things anyway, which made no difference at all), and many blood tests and said nothing was wrong with me. Not suggesting this for one moment for anyone else but I’m on Letrozole and don’t take Adcal, I take my own supplements which my Oncologist is aware of, and doesn’t have a problem with, as my bloods are always good, these include magnesium. Taken at night magnesium can also help you to sleep. Believe it or not I used to worry about taking supplements, then I kept reading how the same ones were beneficial when have cancer, I bit the bullet and then took them to show my Oncologist, she let me go through them all then asked me why I thought she had a problem with me taking them! One thing I was told was not to buy cheap ones as, a bit like brands of Letrozole, it’s the fillers they use which can be the problem.
Hi Carolyn, you should be on the A-cal, calcium and vitamin D tablet as you're on letrozole as it thins the bones. This is aswell as the monthly denosumab. They forgot to give me the A-cals and after a year on letrozole I had developed severe osteoporosis. Grrrr!
Just do as you feel f f and hopethe rest works for you ,but nothing like pain for getting you down
sending my love
Girls, I'm tired . Absolutely no energy. I'm going to take a break from here for a few days. I have to figure out how to help myself. Feeling so weak for me. FF
Ramade, No pins and needles or pains out to limbs. All in my spine.It is mostly when I lay down. It just starts shooting up my spine. It jolts, squeezes and doesn't stop until I get upright. The pain is crushing. If I move it then spasms more which makes it difficult to move. The pain happens even if I'm perfectly still. If you touch my back anywhere it will send shooting pain into the area of T-11. The child was m massaging my thigh and it sent pains shooting into the area. It is all weird.
Ff, regarding your back pain, are you getting pins and needles in arms or legs or hips, or do you get pain that moves around in these areas? I ask because as you know I have cancer all down the spine and the pain was 'referring' to other areas like this. So, in other words any of this would mean cancer in the spinal nerves.
I am still recovering from my spinal radiotherapy, 5 weeks on and still pain 'referring'.
hope you are still able to enjoy your weekend though. Pregabalin is very good for nerve pain!
Love and hugs
Capricorn 13, Thanks for the tip! I will look for that.
Wendy, Yes the stable was good for the lungs, but my big issue is why all this severe back pain.
Srilata, Starting with MRI if that doesn't show anything then bone scan. I haven't asked the benefit of having both. FF