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Does anyone else have these joint pains?

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

This is my first time posting anything on line my whole life so hopefully I do it right! I’m here because I am finding it very hard to find information on after chemo pains online. I was diagnosed with low grade B cell non Hodgkin lymphoma about six years ago and was on “watch and wait” for years. I had six months of chemo that ended November 8th. I just went last Monday for maintenance chemo. My treatments were Bendamustine and Rotuximab(I’m pretty certain I mispelked both drugs). I went back to work about a month ago so I was blaming work for my pains but I never had pain like this before and I’m wondering if anyone can relate? It started in my shoulders. Such excruciating pain. I used a prescription cream my doctor gave me awhile ago for sore tendons but it doesn’t help at all. Now I’m finding all my joints hurt..shoulders, knees, fingers..

 

Has as anyone else had this kind of pain after treatment? Does anyone know if it goes away or if there’s anything I can do to ease it a little? I tried icing my shoulders but other then freezing it for a few blissful minutes it doesn’t seem to help long term.

 

Any advice on wether or not to continue maintenance chemo? I was told its Proven to keep my cancer from coming back for longer but they can’t say how long. I know it lowers my immune system and if these pains are part of that then is it worth it if my quality of life in the meanwhile is downhill? 

please help..any advice is appreciated 

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

I want to help like so many have helped me. My chemo girls told me to take Claritin for 7 days starting day of chemo. Many here say start it the day before. Dont know why it works but my aches and pains diminished greatly after I took it daily for about 3 days and continued for the week. Many folks here are very helpful with experiences. I was diagnosed with non hodgkins lymphoma type b intermediate last month and have had one treatment so far. 

 

Evarista
Posts: 253
Joined: May 2017

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
Posts: 12
Joined: Feb 2018

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! :)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

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

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

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! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

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
Posts: 12
Joined: Feb 2018

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:)

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

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
Posts: 12
Joined: Feb 2018

Again Max thank you SO much! I went to this site and you’re not kidding..I found more information tonight then I think I have searching the web the last few months lol I truly appreciate you taking the time to post this information, you’re a life saver :)

Evarista
Posts: 253
Joined: May 2017

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
Posts: 12
Joined: Feb 2018

Thank you, yes my doctor is my best advisor. I’m not here to self diagnose or get anyone else to tell me what’s wrong with me. I’m simply wanting to know if other people have had similar pains as myself after chemo was done. I find out a lot of information when talking to other survivors and it really helps to find people who relate. A lot of the times my doctor simply doesn’t know and says the pains “could” be from chemo. That’s why I’m here looking to learn what I can from other people and from their experiences!

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

I apologize for not clarifying to talk to your doctor. It is why I mentioned most here will give you experiences. Evarista is a wealth of info tho. 

hjarchower's picture
hjarchower
Posts: 14
Joined: Feb 2018

I found out in August I have Stage 4 Waldenstrom Macroglbulenemia. My doctor had me on a regimane of Bendamustine, Rituxan and let's not forget that awesome shot of Neulasta. I have severe IBSD and Chronic Migraines, Psoriatic Arthritus, and Diabetes. Mix all that fun stuff and the last six monthsd have been difficult to say the very least.  So I can relate to you Pink.

 

Facts that Rituxan and Neulasta both have joint pains listed as a common side effect:

 

Common side effects of Rituxan include:

Common side effects of Treanda (Bendamustine) include:

 

  • nausea
  • vomiting
  • diarrhea
  • tiredness
  • weakness
  • mouth sores
  • constipation
  • upset stomach
  • swelling in your hands or feet
  • headache
  • dizziness
  • drowsiness
  • loss of appetite
  • weight loss
  • mild skin rash

 

Common side effects of Neulasta include:

  • bone pain,
  • pain in your arms or legs, or
  • injection site reactions (bruising, swelling, pain, redness, or a hard lump).

Warm Regards and a speedy recovery. Howard

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

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!

 

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

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

 

 

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

Rocquie thank you very much..sometimes I feel pretty lost with the technical terms and all the drug names! I consider myself very lucky as treatment went very well,the only real down side was I ended up with bronchitis that lasted about two months straight! I pulled more muscles coughing then I ever even knew I had lol

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

It should be pointed out that most patients suffer no serious side effects from Rituxan. It is the most benign cancer treatment available for b-cell lymphoma.

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

My oncologist explained to me how great the combo of bendomustine and Rituximan were and how new to North America..I’m thankful because treatment went way better then what I pictured..

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Yes yes yes !

Thank you for the most basic point made here yet, Shady.  Rituxan of course is not really "chemo" at all, not being a cytotoxic agent, but rather a form of antibody.

max

Luckyp
Posts: 11
Joined: Feb 2018

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

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

Hi Luckyp..I wish I could help but I got gerds and heartburn issues before chemo...I think it’s safe to say it feels worse after my treatments but that could be a total coincidence. I think it’s just that the chemo dried my body out so much that I’m feeling it in my throat and esophagus! Still trying to rehydrate and my chemo ended months ago now..

I wish I could help more :(

Luckyp
Posts: 11
Joined: Feb 2018

I also had gerds before the chemo, it has just become life altering after the chemo. i had many tumors around my wind pipe so maybe it is the drying out from the chemo. I can’t explain the leg weakness but it may be a combo of aging And the chemo. Thanks for your response. I have learned a lot from these discussions. Would love to hear from other double hit survivors

hjarchower's picture
hjarchower
Posts: 14
Joined: Feb 2018

Pink we all have different systems and therefore react differently. As far as Rocquie stating that the doctor only gives Neulasta when your white blood cell counts drop to low is not always the case. My doctor gave me Neulasta 24 hours after each treatment of Bendamustine and I have never had a white blood cell issue. I beleive there are many doctors with many theories on how to treat this ugly disease and it may be that the most common for a "low white blood cell count" is Nuelasta?

 

Thanks for your kind words Pink,

 

A speady recovery

 

Howard

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

There has already been a lot of talk on the bone pain.

So about muscle pain and stiffness.

About 6 months after I completed chemo I was noticing a stiffness and some soreness in my muscles. I knoew that I had not been walking as much as I used to but found it hard to get back into walking. I finally tried going for a massage at a little place in a nearby shopping mall. After about a week of weekly massages I felt a hugh difference. Enough that I could walk easier and more. At the time Pokemon Go was a big thing so I used that game to keep me walking. This year I switched over to a massage therapist and have added streching to my "activities". I am over 60 so it is important to me to keep moving as much as I can on a daily basis. All of this has helped. 

 

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

Thank you Lindary for that information! I think it’s great you were playing Pokémon go :) My son is 12 years old so Pokémon go is a big thing for our family..we used to have a lot of fun outings with that and it really helped to get my son active..so now it’s my turn! I think we just may start up that game again :)

 

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