bone pains

Hi again Trisha, sorry to hear that you are hang these pains.

Bone, muscle, nerve pains are unfortunately part of the blood cancer journey as in reality the battle is going on in the blood and bone marrow.

Flying will exasperate this, just last night we flew him from Gatwick after visiting our daughter and family in Surrey and honestly I though my ear was going to explode….. I have never experienced this but putting our bodies into ‘unusual’ situations can result in unusual problems.

As fir pain relief this is your consultant area as apart from normal over the counter meds you are in the medical professionals hands.

Are you by chance having G-CSF Injections to ‘wake up’ your bone marrow as one of the side effects like bad bone pain.

Good on you getting away on holiday - it was a no go area for me as one my consultant band me from leaving the UK but even if he said I could go - no insurance company would cover me.

Hi Mike, sorry for the long delay in replying. I have read your full health history account and you have been through so much you poor thing and yet you still sound optimistic. I can only admire you for your strength. I have had to cease taking the Imatinib as I have experienced some quite nasty side effects. Since July I have had quite bad symptoms with my eyes, and have now been diagnosed with periorbital oedema which has been triggered by the Imatinib and apparently is a common side effect to this medicine. The pain I am experiencing in my bones has also increased and this can also be a side effect of the medication. I am currently letting my body have a rest from the leukaemia meds and the haematologist has arranged for me to have my eyes checked over at the hospital as they are still giving me problems even though I haven't taken any meds for about a month now. He is also arranging an MR scan to check if there is anything else going on with my bones. It is a shame really because my leukaemia was reacting really well to the Imatinib and I had achieved the desired goal in 6 months rather than 9 months. We will have to see what happens when I begin taking the new meds. Hope you're well under the circumstances. Take care. 

Sorry to hear about the challenges you have been having, the treatment path is full of twists and turns. All you can do is put your trust in your clinical team and look for them to navigate a way forward for you ((hugs))

Hi Trisha48 
I can't answer your question related to bone pain, I am suffering that too but as for the cramps, I have just written elsewhere that pickle juice (sweet gherkins) works nearly instantly for me and lasts about 3 to 4 days

Hi Ultradiv, I will give that a try. I like gherkins so that won't be a problem. Am I supposed to drink the vinegar, if so how much when I get the cramps and are we talking about any particular brand of gherkins that works better than others.  Bye for now.

Hi Highlander, thought I would check in as it's been a long time since we had a chat. I hope that you are OK and still being really positive. I'm feeling quite positive myself at the moment but still having problems with the meds. The hospital tried me on a different one early in the summer and boy did it make me poorly. My Haematologist decided to put me back on the Imatinib but on a low dose of just 100mg.  At my last check up my readings had gone through the roof, so I'm now trying 200mg. If that fails they will try me on a different one altogether.  There is so much trial and error with this cancer, but after being so poorly during the summer, I feel much better now. Due to go back to the hospital in a couple of weeks,  I think, so let's hope we some some positive results this time. Take care Hilander and hope to hear from you soon.

Hi again Trisha48 I am doing good, although I had Covid a few weeks back but have had worse colds.

Living with and being treated for an incurable blood cancer is full of twists and turns, trials and errors.

We have to put our trust in the clinical teams a look for them to use their expertise to do what needs done.

It’s good to hear that your are feeling better compared to how you were in the summer…. let’s look for your journey to be positive and your Heath to stay good ((hugs))

I take a "swig" out of the jar of gherkins probably about 50ml or a little more.
I can't comment on different brands as I haven't tried them all but the large jars from Lidl certainly work and I think are the cheapest. It's a good job you are fond of Gherkins because there is far less "juice" than pickles in a jar surprisingly! So I tend to buy the unsliced variety as in my mind, there is more room for juice because of less packing of cucumbers.

Hi again Ultradiv, thanks for your response. I have currently got 1 and a half jars of gherkins in my fridge as I am on a diet, at long last, and they make a tasty addition to my salad and protein. Not tried drinking the vinegar solution before, but there's a first time for everything lol. I have a jar of sliced and a jar of unsliced, but agree with your comment about there being more liquid in the unsliced version. I get mine from Aldi so cheap and cheerful. With the prices rocketing every day you have to shop where you can get the best bargains. Take care and speak again soon.

Hi again Ultradiv, well that didn't go down very well lol. I took a small sip, about 1/2 an eggcupful of the vinegar, and started to feel quite sick not long after. The taste was fine and quite acceptable, I think it as the acidity which upset me. I will continue to eat the gherkins but just make sure that they are quite wet with the vinegar when I put them on my plate. Hopefully that will help me in some small way. I hope that you are still getting relief from your gherkin cure and wish you well for the future. xx