Weakness in legs and feet.

[wiggles123]

I've posted a few times about being diagnosed 21/2 yrs ago will cll and now after a biopsy sll. I have many of the problems I read on post but wondered if anyone had issues with losing feeling in your legs and feet? My GP thinks it's due to the rituxan I received last summer. I got 6 rounds of rituxan. I have hemolytic anemia and currently my lymph nodes are very swollen. I see the oncologist Friday but I seem to be sent home with more questions than answers. Thanks friends!!

[Newdawn Administrator]

Hi wiggles, this must be very worrying to you especially as you don’t seem to be getting many medical answers. Did the PET scan reveal a possible cause in terms of how the very enlarged nodes are impacting? You are seeing an oncologist and I’m really wondering if a second opinion with a CLL/SLL specialist would be advisable if the issues continue.

Have tests been done such as an nerve conduction test to look for neuropathy and a full metabolic panel to look for vitamin deficiencies? It seems to be unfortunately true that sometimes Rituxan can cause these problems and haemolytic anaemia could certainly affect the oxygen carrying capabilities which leads to limb heaviness, numbness and exhaustion. The added problem of enlarged lymph nodes pressing on nerves may also be a factor but understandably you need answers.

If the oncologist is unable to resolve these issues for you, please consider a second opinion because skilled discussion on further treatment may be necessary.

Best wishes,

Newdawn

[wiggles123 in reply to Newdawn]

I can't thank you enough for replying. The PET scan reads like this under the "impression " section, Several metabolized nodes as listed. And an undetermined metabolized mass at base of tongue, may or not be related to sll. My concerns are, that the nodes have grown a great deal since the scan(15 days )and what is the mass at base of tongue.

I don't want to overreact but I don't feel like the oncologist is very invested. I also don't want to judge bc I am so new to this. I did look on the list of CLL doctors and there isn't one near by, but pending on the outcome of my appointment Friday I will drive 3 hours for another opinion.

My GP ordered the neuropathy test and I do have "mark nerve damage "

I'm feeling lost in the all of this without answers. I appreciate your kindness! I'm sure I'll be reaching out again after Friday.

[Newdawn Administrator in reply to wiggles123]

Yes have your appointment Friday and absolutely make that drive if you’re not satisfied with answers wiggles. I totally understand your concerns and I’d be wanting a more informed, pro-active approach. I’d certainly want immediate investigation into the mass identified at the base of your tongue. This sounds to need a skilled blood cancer specialist.

Let us know how things go and good luck to you.

Newdawn

[Bubnojay]

Hi wiggles123

This is all very worrying for you, in your shoes we would be the same. I hope you get some answers Friday, and if not happy ask for the referral to the nearest CLL specialist.

Newdawn always gives good advice, no wonder we value her so much.

I hope your news from the haematologist is better than expected.

Thinking of you, best wishes,

Bubnjay1

[lankisterguy Volunteer]

Hi Wiggles,

You may find some previous replies useful- see the top right side of this page "Related Posts"

Also you might find some help from these articles:

mayoclinic.org/diseases-con...

ninds.nih.gov/Disorders/Pat...

Len