Pain in the bones in my hands

[Gman2]

Since being diagnosed with cll Feb 2019 (it's in my bone marrow) I have more sensitivity in the bones in my hands. It is much more painful when I accidentally hit my fingers/hands on something. Has anyone experienced this? Thanks

[cllady01 Former Volunteer]

I have not read or heard of hand bone pains being a symptom caused by CLL, but there are other causes to be explored.

I have osteoarthritis that is most evident in my hands and which, especially when there is inflammation present, is quite painful to have a bump or even a brush against something substantial.

There is also the possibility of neuropathy to pursue. Not sure where your pain in the hands is exactly, but the following post might help you begin to sort that out:

medicalnewstoday.com/articl...

Bottom line is CLL and its treatment are causes of some of our discomfort and great pain, but we all are individuals with the possibility of other situations happening.

In your situation, I'd make an appointment to get this checked out by my General Practitioner/Primary Care doctor.

I hope you do get it sorted, as pain can be a major stressor in our lives, which is not good for our overall health.

Let us know what you find out--I am not averse to be proven wrong in thinking it isn't CLL---we all are learners here and welcome verified/referenced knowledge.

[Gman2 in reply to cllady01]

Thank you cllady. I don't think it's arthritis. I have no swelling just very sensitive to hitting them. I am totally positive that the pain I am presently experiencing has not been experienced prior to the cll. That's why I am concerned. It seems like since the cll is in the bone marrow it must have some negative effect on the bones.

[cllady01 Former Volunteer in reply to Gman2]

Here is an article for you to read re: bone marrow and CLL---as you will see, it is not unusual to have CLL present even at diagnosis.

If you have any arthritis and esp. if you are not being treated, you most likely have something in that regard going on. If you are being treated, there may be a connection to the treatment.

You would be best served to ask your CLL hemo/onco about the possibilities and go from there, if there is no acknowledgement by him/her of some connection.

Hope you get it seen to for your own ability to relax and have any appropriate action taken.

[Gman2 in reply to cllady01]

Thank you!

[cllady01 Former Volunteer in reply to Gman2]

Sorry, here is the article link

cllsociety.org/2017/01/basi...

[Ironj]

My joints in my fingers hurt and show some swelling so I’m in the same boat with that and don’t know what it is

[Gman2 in reply to Ironj]

Thanks Ironj. My experience is a little different as it's not really my joints but my bones. I have some minor arthritis and it shows in my hands but it seems like I have had it for many years and have not seen significant changes in my hands. Very strange.

[Smakwater]

Gman2

I have experienced bone pain, and I was told that it is from CLL cells crowding in the marrow. Below is some supportive information.

cllsupport.org.uk/cll-sll/l...

cancerresearchuk.org/about-...

Bone pain and night sweats

Some people whose CLL has changed (transformed) into a high grade disease have bone pain and night sweats. Bone pain happens because there are too many leukaemia cells in the bone marrow, causing pressure on nerves and causing pain. The exact cause of the night sweats is unknown.

I have also experienced intense connective tissue pain and joint pain from arthralgia influenced from the CLL. Not all arthralgia in CLL patients is due to the disease, however, it is note worthy that most of my bone pain and arthralgia disappeared when I was treated with Gazyva.

This may not be the the case for others, and should be discussed with your specialist.

JM

[Gman2 in reply to Smakwater]

Smackwater, I accidentally replied to myself. Please read. Thanks

[Gman2]

Thank you Smakwater! The article was helpful. My hematologist and the PA following me looked at me like I was crazy when I mentioned it. We are aware of our body and the disease makes me more aware and sensitive to issues. The hand pain is there only when I hit them accidentally so it is not a really big problem but I wish the medical people following me would listen and possibly look into it as a cll issue. Thanks

[Smakwater in reply to Gman2]

I know some would like us to think that doctors are the last word, however, My first hematologist told me that unmutated IGHV was not a consideration in treatment. He also told me that FCR is all I would be offered and there would be no new considerations for treatmeant for at least ten years. That was in 2016. It is because of those comments that I have researched on my own behalf, and have overwhelmingly found otherwise.

Like any profession, there are those who are outstanding, and those who stand off. When it comes to malignant illness, I tend to require a bit more for why than just the because I said so response. Doctors are after all, only human.

I say this respectfully and with humility, again however, some think humility is synonymous with timid. No so. Humility bears confidence in truth.

I am extremely grateful to have found those who are grounded in precision medicine and compassionate enough to share it.

Looking forward to more good news from you.

JM

[Smakwater]

Forgot to mention that sometime cancer doctors are also limited because of a variety of reason including hospital protocol, limited resources, and some have to cover all the cancer types in a geographic local.

Either way, there is no shame in self advocating and claiming out of the box.

I have observed two of the top lyme research scientists at NIH disagree and claim that they each held the most substantiated evidences.

JM

[Gman2 in reply to Smakwater]

Smackwater, in reading your response as well as some others on this board I have become aware of how little I know about cll and more specifically the type of cll I have as well as the genetic issues that some talk about. In some ways I am not even certain of what questions to ask or how to assess the results. The significant change was in the WBC which went from 11.9 to 28.2 in 3 mo. and the value for lymphs was 74%. The PA said not to worry but to have the blood tests repeated in 6 weeks as I am scheduled for an appt 6 weeks after that. I don't have any of the classic symptoms like night sweats or weight loss and I am very grateful for that. Since I have been in good health for the most part as I have never been on any meds for a chronic illness this whole thing has me freaked out. People on the board seem to calm and objective and have a good handle on their illness. I hope I can get there. Thank you for listening and your help.

[Smakwater]

It seems that the more we learn about CLL and blood biology, the more we realize that there is much more to learn. One advantage to being a member on this forum is the exposure to others experiences and perspective knowledge. Even though much of it may not apply to us personally, it helps us shape the perspective to question.

Your results should be offered to you as well as your doctor explaining to you what they mean and answering your questions. As far as not worrying, it is the explanation as to why you should not worry that will make the difference.

As you grow in your understanding of your disease and the available treatment options, you will make your own judgements based on the knowledge that you acquire. It is that knowledge and those judgements that will replace the worry.

My doctor stated "knowledge without judgement is just anxiety". I have found this to be true. A judgement based on sound knowledge is usually followed by appropriate action.

11.9 to 28.2 WBC in 3 months is quite a jump, however, your doctor has scheduled you for tests again in 6 weeks. They will probably do so again another 6 weeks to see if the doubling is consistent.

With CLL we are all a bit freaked out, just at different levels of expression.

Looking forward to you getting answers and finding some resolve with all of this, it can get heavy.

JM