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Advice needed re bone pain please

I'm posting in the hope that you can help me with regard to my mother. She's 81 and was dx in 2000. She's on Glivec 400mg daily and everything seems to be going OK except.....

About a year ago she started having problems with her right shoulder. She can't lift her arm above waist level because of the pain and absolute lack of mobility. She lost the use of her left arm above waist level many years ago when she had polio. Her GP sorted out some physio but unfortunately this didn't do any good at all.

As you can imagine, this causes her great difficulty. She's lost her sight because of diabetes and this seemed to be another challenge for her to face.

Now she's getting severe pains at the top of her legs. It takes her an age to get up and mobile and she's taking Paracetomol all the time to deal with the pain. I know she's old and older people experience mobility problems but, given other comments about bone pain, I'm wondering if this is something to worry about.

I did mention it to the Haematologist last time I took her to clinic but he completely ignored me! She's due another clinic visit in about 2 weeks time. In the past, when she's had problems such as nausea / vomiting, I've mentioned this site as a source of information for me but, sad to say, that's been sort of dismissed.

Is it the perceived view that bone pain is due to Glivec or is it due to the CML, do you think? And is there anything more that can be done? From what I've gleaned from this site I've already suggested to her that she drinks tonic water and takes a calcium supplement but I do worry about her taking so much Paracetomol.

I'd be really grateful for any advice anyone can give me. My mother so wants to retain her independence in spite of all her problems and, unfortunately, I live some way away from her. My brother does live near by so she does have someone to help her out when needed. She finds life so frustrating, not surprisingly!

Hi there
Your poor mother certainly has been dealt a raw deal with her many problems and no wonder she finds life frustrating ! Bone pain should not be ignored, it could be due to Glivec but also could be due to the CML. I would switch to Ibuprofen for pain relief as paracetemol does not mix well with Glivec in the liver and could cause your mum more problems. What are her counts like ? I would persevere with a good calcium magnesium supplement. Tonic water does not have much quinine in it these days but if she does suffer badly with cramps may be she could get a quinine supplement from her doctor. The calcium magnesium usually works well.
Some health professionals do feel threatened by informed patients it is sad to say even to this day but change is happening slowly but surely.
I am sorry your mother has such an unsympathetic doctor and I do hope she get on better with the Ibuprofen. Keep us posted.
With best wishes
Elizabeth

Hello Elizabeth

Thank you for your quick response. I shall be speaking to my mother tonight and I will pass on your excellent advice.

Her counts are all OK - her last BCR/ABL was 0.2 - does that sound right? All her other counts are stable and the consultant is quite happy with them.

I shall go armed to her next consultation determined to ensure this bone pain and immobility problem is addressed.

Thanks again

Ruth

PCR is very good Ruth - I have emailed you a few more suggestions.
Elizabeth

Dear Ruth,
For some, bone pain as a side effect of Gleevec persists and some patients even need a more heavy duty pain medication for it (one that is compatible with Gleevec).

I personally think that because the drug is acid, you need to offset this with an alkaline diet (this is a strong view of naturopaths). Otherwise, for the blood to not be too acid, the body uses the alkaline reserves and then may also need to rob some calcium from the bones for this, and I wonder if this causes bone pain in some patients.

Being elderly, her diet may be restricted or limited. There are many 'green products' that you can get in a health food store that are very alkaline and may help this problem....this may be worth a try. I live in the US, so I don't know what you have available there, but eating greens is alkaline, as is a 'greens supplement' which is easier than modifying the diet.

Gleevec also seems to cause some isolated joint problems in some patients. She sounds like she is developing a frozen shoulder. Applying a hotpack might be helpful.

I hope your Mother gets some relief of her discomfort....which her oncologist should address as well.

Nancy C.
Eugene, Oregon
retired physical therapist