I had a nurse go over it with me on Friday. I have arthritis in the ankles and wrists. I am sure more places then that. There was radioactive die given and it went to those places and there was a whole lot of activity in the sternum. So I really do not know any more then I did before other then that those particular bones are being affected by either my Cancer or the Arthritis I have. I see the specialist for Cancer on the 14th of this month and I see the Arthritis specialist on the 27th. Seems too long to wait for all this. My spleen is still seriously swollen, my armpits are swollen, my abdomen is swollen. I have a very sore back and buttocks and groin. I am, down to 42.5mg of prednisone. I hope I get straight answers soon.
hi i was a clinical nurse in cancer care before retirement my field was pain and symptom control and although things move on after you retire some of the basics stay the same ,please do not answer if you prefer privacy but where is your cancer and have you been diagnosed with bone mets or is this a new possibility ,are you based in england .i am sure it seems ages before you are seen cant you be fast tracked ????good luck with it all ,if i can help i will but remember i am now retired and so some things will have changed !!! carolk
Hi Snaggler
I can understand it must be so confusing for you not knowing which symptoms relate to which illness.
Certainly, PMR can manifest itself by pain in the lower back, hips, groin and buttocks, plus often down the front of the thighs. I'm wondering if there been any improvement in your pain in these areas whilst you have been on the high dose steroids? If not, then it does raise the question of another auto immune disease such as rheumatoid arthritis being the possible cause.
I'm sorry that I don't know anything about CLL but do wonder if the inflammation you mention as showing in the sternum area oin the scan is related to your CLL?
As your appointment is quite far ahead, perhaps an appointment meanwhile with your doctor would help - at least, s/he would hopefully be able to decipher the blood test results.
Very best wishes, Snaggler.
MrsO(Shirley)
When I was on 50 mg the symptoms were mostly gone except in the ankles, wrists and sternum. Now that I am down to 40 mg. The pain in the back, spine and buttocks/hips and shoulders is now back. I am also getting neck pain every single day. The headache has subsided but the vision is still off. I cannot stay on a high dose of prednisone as it is affecting the CLL in a very negative way. The numbers have pretty much tripled. I can barely function. I am so sore, tiered and cannot sit, stand, lay down without some kind of discomfort. My spleen is so huge that my stomach looks 8 months pregnant. My thyroid has a huge lump on it on the right side. I have swollen glands in my armpits, neck, groin, legs, arms, chin and probably in my stomach. I have a list of symptoms that I take with me everywhere. I see the oncologist/hematologist in 6 days. She better have some answers because I feel I might lose it at this point. I do not understand the dis-concern whatsoever. I wish I lived in the UK. Seems your healthcare is way better then Canadian healthcare.
hi with all your problems i am amazed you are not fast tracked but i do not know the canadian system .i do hope you get some answers soon it is an awfull time waiting to go because you fear the worst but hope for the best which is very tiring to both body and mind ,dont be afraid to express your fears you would not be normal if you didnot feel you were losing it at times .good luck for what it is worth my fingers and toes are crossed carolk
Snaggler, I do feel for you - although 6 days isn't long now it probably seems like an eternity for you. At least the oncologist/rheumatologist should be able to decipher the scans and have some answers for you and the necessary treatment to make you better.
These auto immune diseases are so very complex. Just over a year ago following a severe sore throat and mouth, my neck glands refused to return to normal nd my mouth and throat remained parched, so I was investigated for lymphoma. However after MRI and CT scans, a diagnosis of either Sjogren's Syndrome or Mickulitz's Syndrome was given (the jury is still out as to which one. I seem to have a penchant for succumbing to conditions which have unpronouncable names! They are linked conditions with similar symptoms. Apparently it is fairly common to contract another auto immune disease when you already suffer from one.
It's good that you keep a list of your symptoms to take with you to your appointments as it's so easy to forget important things, and it does help the consultant to see the full picture (or it should!) Meanwhile, I do hope the 40mg dose may soon get the inflammation under control - if not you may find that the rheumatologist will decide to give you a booster injection to help. Do let us know how you get on and I've got everything crossed for you. Meanwhile, if you feel like venting, we're here.
MrsO
I have never been patient. I know I lack that quality. However when it comes to life and death it is even harder to be patient. The numbers are still going up with the CLL. It has me wondering when and if they will start chemotherapy. I now have lipemia which can give false negatives in ALT, CRP. So who knows. Anyway I will be happy to get some straight answers soon and I hope my doctors will be completely open and honest with me about every single detail. I am not one for not knowing all the details. Thank you all for allowing me to rant! Much love and respect. Snaggler.
Snaggler
Like you, I am also someone who wants all the answers and I think our doctors appreciate that more these days.
With all your worries, I would be ranting too so rant away if you feel like it - a trouble shared is a trouble halved......
Wishing you well.
MrsO
feel free to rant its important to express negative feelings as well as positive feelings it gets my goat when people want you to feel full of fighting spirit all the time thats just not possible ,you have to let normal feelings out and if that means kicking the cat (only an expression animal lovers )then so be it ,we are all thinking of you carolk