Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I had one of them done right at the start in to my pelvis and as you say it’s eye watering.....
have they got you in some decent pain relief? I’ve both shortec and longtec......
I’ve got constant pain niggling me in my back but during the steroid days it pretty much disappears .....I’ve a couple of cracked vertebrae in my Back so been told no heavy lifting and the myeloma has affected my spine and sternum the worst so got to be careful with lifting etc ...
been told to keep as active as possible to keep the fitness up but am also concerned I do too much and injure somewhere that’s been weakened.....so how much to do or not do is where I’m struggling
yes ive had pain in other areas of bone / shoulders etc but it comes and goes but I believe it’s just the way of it ....
Also noticed that after coming off the 4 days of dex that my shoulder joints are really sore and stiff for a few days .....
so far I’ve not been bothered with sickness, just last weekend I struggled to eat for a couple of days after taking my second dose of cyclophosphamide tablets on Thursday.....felt terrible on the Friday and didn’t hardly move out of the house all day....
I’m having blood taken tomorrow and then in on Thursday to speak with haematology to see how the levels are ....fingers crossed they’re going in the right direction....
thanks for taking the time write the above...
youve aswered lot of my questions and it’s good to know you were On a similar treatment to what we’re on at the moment....
yes they’re certainly loads of thoughts swimming around in my
head at the moment but joining this forum and having contact with a couple of people has definitely helped....
am sure I’ll be back asking more questions as time goes on...
many thanks again Reay
I Remembered when I read a post about bone marrow aspirations that I had my first one done ay age of 16.
The Drs took from my sternum. I was taken to appointment by my GP who lived up the road from me & also did the test. I only went the day before & was diagnosed with perpurea a blood disorder. I had no idea what the test involved so no family member came with me & I walked into town afterwards. I can only think it was a less invasive test.
I have had 3 since & found the last one the worst. seen the same `aspireter` each time, but I do ask for him as he is so kind & caring & will stop for a while if the test gets too painful.
Often felt like not having these done, no choice!
Waiting for results from bone biopsy, haematologist this Monday.
Hope you get the results you need.
I am also waiting for results from the infected bone lesion which I should get Friday I hope. Consultant is expecting it to be full of plasma cells to reinforce the multiple myeloma diagnosis.
I've had two biopsy now and praying I don't need any more for some time. I'm on my first weeks chemo. Having bloods done Thurs so hoping something may be happening. It's a long road so not going to think about them too much.
Only another 6 or 7 months to go.
Thanks for reply.
When your bone marrow was tested did you have malignant cells in marrow?
When I had mine done last July there was no sign of this.
When I had all results then he said he was so pleased I only had a `single` plasmacytoma.
I saw my haematologist about a month ago after a PET scan & he was very surprised about lesions.
I am a bit worried that these have shown up within 6 months.
All we can do is cope with a day at a time.
I am so glad I found this site, when I am awake at night it is almost comforting that so many are sleepless.
Do not feel so alone. There is no-one to talk to in the night as I live alone.
Yes when they looked at my marrow doctor said there 5 percent malignant cells.
Consultant stated that this was quite a low reading so wanted do a further biopsy straight into the bone lesion as this would prove exclusive that it is multiple myeloma.
Then they said they wanted to do a further full body MRI scan and they found lesions in my hips back and ribs. That was frightening to hear you really feel pickled.
Will get the results tmw on lesion biopsy.. He has started me on the chemo as he is 95 percent it is myeloma but could also be testicular cancer. Apparently it's a very soft tissue cancer and hard to see on CT or MRI.
He states that the lesion will or should be full of plasma cells. I just hope he doesn't say just wants to do another test. That's all he seems to say and it's often means pain!!
I know what you mean though it plays awful on your mind bad night times are the worst
So you are still in limbo land so to speak then have they confirmed to you that it actually is MM yet
Sorry not to ask how did your results for lesions go? As you can see I am awake in the night again.
Bad night with pain. Feel very lonely & alone & tearful.
I had 5 days of steroids that finished on Wednesday, they make everything ok for those days then down you come.
Do I take extra tablets, codeine, then take other meds to ward off side effects. It is a vicious circle!?
I can cope with most things life throws at me, but the pain & lack of sleep are getting me down. May ask for some tablets to help me sleep,. it has been near a year since I have slept all night. At least with the bone biopsy it is done under a full anaesthetic not like the bone marrow one.
How are you feeling on the chemo?
I see haematologist Monday so will know what is happening.
Hello Scilly, I know I am not Mark, but reply because I can't bear to think your late night post may go unanswered. If you are still awake you may get this and know someone cares that you are miserable in the small morning hours.
Lack of sleep and pain makes the minutes hours and the hours days.
I don't know if hypnotics will work for you or if they will give them to you, but it may be worth a try.
I know you are there suffering,and I care...for whatever that is worth.
Will be up another hour or so myself, I estimate.
Dear scilly, for what its worth to you, when I was taking steroids I would be awake in the middle of the night on a regular basis and they made me tearful on many occasions, as for pain relief you are right it does become a vicious circle if you are not careful. I would talk to your doctor about other more effective pain control you can take at bedtime so at least you can sleep. Sleeping pills are only ever a short term fix and create problems of there own so it's important to try other methods first. I sympathise with you greatly as not sleeping properly affects your ability to function during the day and the issue should not be ignored.
We are are going through this together, take my number if you wanna chat call me sometimes it's better than an email. I understand if you don't but the option is there. I am in the same boat. My lesions are so painful I could cry. Started week 2 on Friday. Day 3 was worst felt sick but wasn't. All my joints ache and must admit I felt truly awful. Then nurse rang to check up on me and said day 3 is hard. Got small red rash when they injected me in my belly.
My blood levels for para protein started at 10 now down to 8 so something seems to be working. Even after a week. Don't think that will happen every week probably the city getting a shock with all the drugs.
My biopsy came back from lesion and it was full of thousands of plasma cells so it's now definitely confirmed as multiple myeloma and not maybe testicular cancer.
Don't️ know which I rather had, I suppose with testicular when it's gone it's gone unlike this we got that always there hovering to come back
Any way my number is [edited by admin] there if you or any one want to ring. Sometimes chatting helps. I'm still numb myself with it all.
Didn't realise how time consuming the treatment can be too
Had a drip for bone infusion as well Fri that went very quickly 15 mins. Hopefully that's doing something.
What lovely people on this site. I managed about 3 hrs sleep.
Looked at site & replies made me cry, so kind & caring.
Oh dear I am in a state!! Sado.
I would love to chat & I will call you.
A voice is so comforting.
It is a lovely day here, sunny & wind dying down. I will shower hide the dark circles & go for walk.
Always lifts my spirits.
I think yesterday was a really down day. After so many tests etc over the last few weeks, now waiting for results & another friend with cancer it all got to me. I text my neighbour & said I was totally bored, I am normally active & can drive.
She text straight back & asked if I fancied a `rain walk`.
Then invited me round for a game of Trivial Pursuits.
Needless to say, with all the `brain fog` I was totally useless.
Thanks again Mark
I will ask for help.
Thank you for your kind thoughts.
A pity the night owlers lived nearer we could all meet up in the small hours! That would be fun because everyone seems so positive & wants to be well & happy.
I am certain we would all sleep well after a session!
i just wanted to say as someone who has come out the other end of treatment it isn't easy but you can prevail. The body does adjust to the situation as you progress, it's important not to expect to much of yourselves during treatment, steroids have a big impact on the mind and the body and were the thing I found most difficult to cope with but once the treatment ends you will be your normal self again, so hang in there, be kind to yourself and it will all be worth it in the end. And never be afraid to ask for help from your cancer nurse specialist, they can get you counselling if you need it .
Thank you for that, it does cheer people up to know some one has been there & done most of it.
I asked my Dr for help as I was going through a really lonely & scared patch, & I was not coping.
He contacted Macmillan nurses in my area & was told I did not qualify!
Asking haematologist tomorrow what help there is.
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