Does anyone else have these joint pains?

Hi Pinkie....Sorry to hear that things are going poorly just now.  Shoulder bones or shoulder joints?

Two thoughts come to mind:  the first is the bone pain that Critter refers to which is due to the white cell booster given after chemo (Neulasta, Neupogen,etc.)  But you do not mention whether you are getting that with your maintenance chemo (Rituximab alone?).  Are you? If yes, then that kind of bone pain is a possibility.  Many people here and on other lymphoma forums report good luck dealing with it using Claritin (10 mg).  Best started before the Neulasta shot and continued for a week or so.  But do check with your Oncologist before taking.

Another possiblity is what I have lovingly come to refer to as "Random Acts of Inflammation".  Me:  Furious bursitis in both shoulder joints commencing ~6 weeks after finishing chemo.  Sound familiar?  Referred to Ortho for X-ray and CT.  Yup...bilateral bursitis.  On to physical therapy and anti-inflammatories (which I had to stop because of low platelet count).  Other inflammatory events over the last 8 months include mucositis and thyroiditis. A related possibility is some kind of arthritis, since you mention several joints in addition to your shoulders.

Since our chemo disrupts our immune systems and our immune systems are intimately associated with our inflammatory responses, this kind of thing make a bit of sense. Not fun, but not crazy either.  

The bottom line is that you need to discuss this with your Oncologist.  S/he may refer you to either Ortho or Rheumatology for further evaluation.  S/he will also work with you to determine how or if you should modify your chemo.  There is no reason for you to suffer with this any longer than necessary. I encourage you to not self-medicate.   Good luck taking care of it.

Pinknikegirl1974 said:

Thank you

Thank you for your reply! I was only told by my doctor that the maintenance chemo would be a shot of Rotuximab..I’m not sure if there was anything else in it but I would imagine they would have told me..? I find unless I specifically ask though I don’t usually get very much information and I am so new to all of this that I never know what to ask! You sound very informed and I appreciate you taking the time to answer me!

Sorry about your pain, Pink.  What is perplexing is it kicking in after the end of your first-line drugs.

Rituxan, when it causes issues at all, is mostly associated with breathing issues and upper respriatory problems.  The most immediate culprit for bone pain would Neulasta if you still get it, which is unlikely.  Regardless, I would not discontinue maintenance until the doctor had investigated all of this and ruled out all alteratives for causality.

Ending chemo does not end its effects on the body.  Many of these side-effects can linger years or months or even decades, before showing themselves.  I still have neuropathy 8 years after ending chemo for instance.  Adriamycin (a drug in abvd, chop, epoch, and many other combinations) sometimes causes heart failure ten years after ending it, with no warning signs beforehand.  So hope that this shoulder pain gradually passes, since it probably will. Isolating what exactly is causing it may be tough or impossible.

max

Since it seems that you are not getting Neulasta or similar, this sounds like it might be inflammatory.  Your doctor is your best advisor here and I encourage you to discuss this with him/her as soon as you can.  I waited overly long and, as a result, suffered many unneccessary sleepless nights and ended up with both arms nearly immobile ("frozen shoulder). As Max says, the discussion about the continued Rituxan should be with your physician.

Pinknikegirl1974 said:

Questions

Thank you for the replies, it’s nice hearing different stories,  it really helps! Max you said it’s been 8 years since chemo? First of all congratulations, that’s fantastic! I’m sorry about the lingering neuropathy

im curious otherwise how your health has been in the eight years if you don’t mind my asking? Did you have maintenance chemo? Is your cancer like mine where I was told it can’t be cured but the chemo is just to keep it away for longer? When you say that upper respiratory problems are common with Rituxan is that the same drug as Rotuximab? I’m extra curious because I have had TONS of breathing issues from sore tight throsy, to rough voice, to constant coughing and even waking in the night gasping for breathe. My family doctor said it’s all symptoms from Gerds disease so I am on two medicines for that now but it leaves me wondering if it might be from the chemo instead...

I think one of the most confusing parts of cancer is when anything goes wrong with your body and health you’re stuck wondering ok is this cancer related or is something else causing this...ugh! 

I am pretty well today, Pinknike.  I had breathing problems for a few yeas after chemo ended and was sent to a pulmonologist. He determined that I had fibrosis, from GERD !  He said breathing in stomach acids is commonly very harmful to the lungs.  So ensure that you control your GERD.

I had an indolent HL, a different disease from yours. But no, I never required a "maintenance" period, since no such drugs exist for what I had.  "Maintenance" is almost always for indolent NHLs, strains like follicular and some others.

Yes, "Rituxan" is the same drug you are taking; it goes by several diffent chemical and trade names.

I later developed Stage II prostate cancer, wholly unrelated in any way to Lymphoma, but that too is seemingly "cured" today.

Pinknikegirl1974 said:

Thank you

Ive heard so many drug names and doctors terms for things over the years that I am still struggling to keep up. I appreciate you answering all of my questions i really do.Thank you for sharing your “story” to! I’m sorry to hear you developed another cancer, that’s awful, but thankful you are cured of it as well

it sounds like it’s been a long road but you are doing well.(pretty well is WAY better Then the alternative:)

 

 

Pinknike, the best chemo drug information site anywhere is chemocare.com    I can no longer get links to work as links here at CSN, so just type in and save chemocare.com on your browser.   

It has the best information on every FDA-approved chemotherapy agent in existence.  It is a joint project between The Cleveland Clinic and The Scott Hamilton CARES Initiiative.

Besides drug information, has sections regarding side-effects and associated conditions that affect cancer patients.

max

Pinknikegirl1974 said:

Thank you Howard!

First of all let me start by saying I’m truly sorry, but you are not alone! That’s a lot for one person to go through for sure

I just keep hoping and praying that scientists reach that cure that everyone’s been hoping for before any of us have to go through that anymore...

So you were given the same two drugs as me, but I never got Neulasta..? It sounds like I should be thankful for that but I’m just curious why I didn’t get that part because I’ve read lots of people getting that on here. I’m still pretty new to all of this myself having gone through my first treatment starting in June and ending in November. A lot of it is a blur. I’ve had the cancer for I think about five or six years now, but I was on “watch and wait” and during those years I just did my best to forget I had it where as maybe I should have been researching more on my disease I guess

 

I really appreciate you taking the time to list everything on here, thank you for doing that!

 

I wish you all the best to Howard!

 

Pinknikegirl, neulasta is a bone marrow stimulant which helps the body make white blood cells. If you never got it that is a good thing. It means your white blood cell counts never dropped too low. 

Rocquie

i am 2 years out from epoch-r chemo and doing great in remission but have significant weakness in my legs and gosh awful heartburn. Anyone else experience that?  My first post on here