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need support soon.

janaes
Posts: 800
Joined: May 2016

I really could use some support right now.  Im really fealling down and discouraged.  I've been having joint and muscle pain and its really discouraging.  I have been reading some past posts about this and am hearing how it doesnt go away.  Some people who have had the pain for years and nothing has helped.  I was really hoping i could go back to work.  I am a single mom and really need the money.  I know there are people on this forum who worked during chemo teatment.  Did any of you experience the joint and muscle pain and still work.  My pain is getting to where i have a hard time going down and up stairs. I tend to grab onto something when doing the stairs.  I was carrying groceries inside the other day and made it up my two steps but it was hard.  I called the nurse at my oncoligists office three days ago and told her about my pain and told her how i wanted to beable to work and she told me to take tylonal.  I tried that for two days and it didnt do anything.  For sure not enough that I would feel like i could do the stuff i need to at work.  Im not working now because i am off in the summer but am supposed to start in August.  I wanted to make a descission about work sometime after my second chemo treatment (which is this tuesday).  My problem is I can manage to take a few moths off for treatment if nesasary but if this muscle and joint pain is cronic i dont know how I would work.  I just dont feel that tylonal is the solution.  I feel there is something more that needs to be done.  I didnt feel my nurse took me seriouly enough.  Ive heard I would love to hear what others have to say.  Im going to Idaho for the weekend and am hoping to hear before I go if possible.  Thanks so much every one. I would forsure like some support before i go to my chemo appointment on tues.   I see the doctor right before and would like to know what i might be able to say to him.  thank you.  I dont know what I would do with out you guys.

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

I'm so sorry, Jana.  My heart goes out to you.  I felt like my doctors and nurses didn't take me seriously either while I was going through the chemo.  I think they realize now, when they can see the damage, I wasn't just whining about some minor aches and pains.  There was no way I could have worked even part-time while going through chemo and even now, almost seven months since my last chemo, could work full time.  I now work about 12 to 15 hours a week and that's it.  However, Lou Ann worked straight through....it all effects us differently.  (((Jana)))

Love, 

Eldri

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm so sorry Jana and I so understand. Luckily I am retired because I don't think I could have worked through chemo either or even now when chemo might be over. I also have continued pain but not quite like yours. Mine is stomach and digestive issues. While I get suggestions from the dr and PA I don't think they understand how dibilitating it can be. Probably no one understands unless they have really gone through cancer. This is the best place to vent and I pray your pain will subside or some solution will be found. All my best....

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Jana, I worked the entire time.  Now, my job is mainly a desk job but I did do traveling - as it is part of my job, but I realize your job involves lifting, moving, standing, etc...  Certainly your work knows what you are going through and may be able to work with you on doing a different part of your job.  The best thing to do is to talk to your work.

As for the pain in your joints, yes, I had that and was told to take Tylenol - not aspirin.  I had the pain in my joints after treatment ended and I asked my sister to see if she could find something out there.  She read where EGGSHELL MEMBRANE was supposed to help.  I tried it - and it worked within days.  You can buy it in capsule form at Vitamin Shoppe, online, probably GNC...it was like a miracle for me.  Now that was me, and we all are different, but I was willing to try something to help me move better.  I really was not interested in any prescription pain med.  IMO doctors are creating the drug problem in this country and we have to say NO to them too.  (Just my opinion)  I also thought it was important to keep moving as much as possible.  Muscles tend to forget what you need them to do for you and that isn't good either.  Everyone is different and just because you are experiencing it today doesn't mean it will last after treatment ends.  

As for help with the neuropathy from chemo you also might like to read through this link:
http://www.cancer.net/navigating-cancer-care/side-effects/peripheral-neuropathy

Again, I think the best thing to do on the work front is to talk to them.  I have employees and if they don't tell me what is going on in their lives I can't do  anything to help.  

janaes
Posts: 800
Joined: May 2016

Hey notimeforcancer, I talked to my doctor about doing natural medicines for my mucsle and joint pain.  He didnt care if i did it.  he suggest ibrupofin but since he was okay about the natural stuff, i ordred some of the eggshell membraine stuff.  Im not sure when it will get here but wanted to ask you a few questions.  How many miligrams did you take and were there any side effects to the stuff?  Do you still take it now that you are done with chemo?  by the way thanks for your help with this.  I hope this works for me too then there will be two of us.

with great love, Janae

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Good for you!  Eggshell membrane is all natural vs ibrupofin - which can cause damage to your body.  The box tells you how much to take - I thought it was one a day - as it comes in capsules.  Follow the instructions on the box or bottle and that will be fine.  I took it for a few years and felt good so I tried not taking it and I feel fine.  If I ever had the pain again I would take it again.  

Janae, just remember, you are putting your body through some pretty rough stuff right now, so there will probably be somethings that just can't be 'fixed' right away.  There is no guarantee that there isn't some discomfort with this all, but you'll make it through.  

janaes
Posts: 800
Joined: May 2016

Thanks for the info. 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I had terrible back and leg pain from Taxol usually starting on day three after chemo.  I did take one Oxicodone at night for several days and that helped a lot.  I had another round of pain recently that was miserable, but it turns out to be from my SI joints and I was given an injection in the joint and that helped.  I was so sure the pain was from the chemo, but it turned out to be intirely something else.    I did teach for two years with this. I scheduled chemo for Wednesdays, as I always felt good for the next two day.. Felt bad over the weekend and then crawled back to school on Monday.  Luckily I was blessed to have wonderful coworkers who did help me, including running upstairs for me.  The kids really kept me going and I was able to go into my classroom and forget cancer.

Don't be afraid to ask for stronger pain meds if you need to.  I did have a problem with that for a while.

Hugs and prayers Lou Ann

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Oh, Jana, I am so sorry. I was hoping you'd breeze through Chemo, with being a single mother. I have no advice to give, as I haven't experienced any of this. But, I do want you to know I care. I will begin praying that you will find an answer to rid the pain, that your body will repair itself quickly and conquer this monster. And, that you will remain optimistic that this will pass. We're here for you in any way possible. Love and hugs!

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

I am having a lot of pain now too...way more than I thought there would be...the day of chemo and the day after I felt GREAT...now, not so much...not sure what to do either...not sure why they tell people to take Tylenol...that has done nothing for me either...taking a warm shower helps for awhile...can't help thinking being able to totally relax would kick it to the curb...good luck to you....

brissance's picture
brissance
Posts: 192
Joined: May 2016

It affects all of us differently..  I have been disgustingly well.  Extremely lucky.  Some glitches but on the whole...  can't complain.  I do and will keep you in my prayers...  a single mom is difficult on a healthy person.  Just keep your eye on the prize...  a long slow dance with Ned and your children watching you dance. They will learn so much from your grace and strength in these dark hours.  God bless...

Patty

Red Corvette
Posts: 114
Joined: Jan 2016

Sorry to hear you're having pain. My wife had the exact same hip and leg pain starting usually from days 3 or 4 after chemo treatments. Because chemo is additive the pain got worse after each subsequent treatment. The good news is her doctor prescribed Percocet which worked like a dream and allowed my wife to sleep and work. One tab at night and 1 during the day and she got through it ok. Joint pain is a very common side effect from the taxol but does usually go away after treatment stops. We pushed lots and lots of fluids (water, juice, tea) during treatment which helps push the chemo out faster too. My wife's doctor also prescibed Xanax and Atavan during chemo which my wife used sparingly which helped her mood greatly. Don't be afraid to ask for help from your doctor, your body is taking a beating with chemo but you are a warrior and will get through this and be ok. My wife is fine now and you will be too! You are in our prayers.

Red

 

MAbound
Posts: 1150
Joined: Jun 2016

I don't see here that anyone has suggested Claritin (Loratadine) for muscle and joint pain from Chemo. It didn't do a thing for me as the pain I've been dealing with is the "stocking and glove" pattern of peripheral neuropathy, but before that distinction was made, I was told to try Claritin for muscle and joint pain by the oncology nurse. Has this been tried and worked for anyone else for this kind of pain?

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Claritin is used to relieve bone pain from Nuelasta.  It works well for many.  Most of my bone and joint pain came from Taxol though.  

Hugs and prayers, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

I was already on allergy medication but switched to Claritin based on a recommendation I got from this site.  I asked my oncologist's PA about it and she said, the oh yeah, I forgot to tell you to do that.....duh!  I had some bone and joint pain after the first chemo but handled it with Tylenol and Percoset....but after the Neulasta shot after the second chemo it felt like my hips and pelvis were vibrating in pain.  There's a whole thread on here about this - someone described it as "sparkling" in pain.  Percoset didn't even touch that pain.  I refused anymore Neulasta after that.

Love, 

Eldri

brissance's picture
brissance
Posts: 192
Joined: May 2016

Not the right place to comment but fingers can't help it- Eldrie, I LOVE LOVE LOVE you hair!  Envious but happy for you!!!!!!!

ConnieSW
Posts: 1570
Joined: Jun 2012

it is growing sooo fast.  I vote you keep it short- very flattering.

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

Thanks, Patti!!!  I've never had short hair before but it sure it's easy to take care of.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

Hey Lou Ann, This is off subject but I wanted to ask you if they still have you on Nuelasta? I was thinking about you last night and was wondering if that could have caused your heart issue instead of the chemo? I'm sure your doctors thought about all of this but I just felt a need to ask anyway.

I hope you are doing better today.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Before I started on the Avastin.  It is one of the rare side effects of Avastin.  Both the cardioligist and my oncologist are sure it was the Avastin because of the way the heart damage occurred.  Thanks for your thoughts.

Lou Ann

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Claritin did help me with joint pain. My pain was worst after the first chemo. With the subsequent chemos it wasn't as bad.

janaes
Posts: 800
Joined: May 2016

Im thinking this joint pain is not from the nulasta shot.  I did get bone pain from that but it was gone after a few days or so maybe a little longer.  I wasnt feeling any bone pain fow a few days and then this other joint and mustle pain came.  thats why i dont think it was from the nulasta shot.  I did read that mustle and bone pain can come from the chemo drugs.  That is what is feel.  Any ways thanks for all of you.  Its so nice to know i can count on you.  I think i decided im going to go to buy the egg shell membraine today and see how it goes at the doctors tomarrow.  Im really still feeling that i would like to try this stuff before i try anything else because if the egg shell membrine capsal works i would feel better with that.  I hope my doctor is okay with that.  I dont know what i will do if he is not.  Any ways i think i realized one of the things that im afraid of with my work is that the last time i talked to my boss about this crazy beast of cancer,  i had told her what my gynocalogical oncoligist told me when he told me i wouldnt meed chemo.  So my boss still thinks that I will be done with radiation before i go back to work and thing will be back to nornal. I still feel so mad sometimes that my doctors were so wrong and that it took so long to figure out i needed chemo.  After reading my pathology report it was so clear that i needed chemo.  I still dont get why my gynocological oncologist who did my sergery didnt read that pathology report thoughely before he told me i didnt need chemo.  Any ways since we dont work in the summer, im going to have to call her to tell her all this change.  I hope it all works out.  I am going to put my job situation on the back burner for a litttle longer and see how this chemo treatment tommarrow effects me  and have a little more knowledge about what im going to do with my mustle and joint pain.  I think ill be able to deside that better after i talk to the doctor tomarrow. 

ncg007
Posts: 136
Joined: Nov 2015

jan...could this possibly be Neuropathy?  Please discuss with your dr, I think we've all experienced nurses that just don't consider the real cause of pain.  I ended up with severe Neuropathy but not until after I finished my 6 rounds of chemo and it's been going strong for 5 months now. For me the nerve damage feels like joint pain that radiates from my feet up through hips and same for hands up through arms.  I am currently taking Gabapentin plus an antiflamatory to treat the arthritic joint pain.  For some the gabapentin has worked, I'm still struggling though.  Physical and mostly massage therapy helps me the most.  I hope you find some relief soon.

Nancy

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I hope the job situation works out. Also, I have never had Nuelasta and still had bone joint pain. My PA said it was definitely caused by chemo.

janaes
Posts: 800
Joined: May 2016

Thanks Soup.  Me too.

janaes
Posts: 800
Joined: May 2016

I just got done with my second chemo.  I feel fine just like i did last time on this day. I guess what I wanted to say is i called my boss today and told her what was going on with me.  I told her i was doing chemo and hoped to stil be able to work.  I told her a few more details and she told me that we will plan on me still working.  I told her i woul have to miss a few days to do my chemo.  She will probably call her boss which im a little nervous about.  But im glad i did something about it and i dont have to worry about what my boss is going to say.  Right now is still have a job starting Augast 10.  Yea.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Janaes, I'm no lawyer but I believe that the ADA (Americans with Disabilities Act) might protect you from losing your job over your diagnosis and/or treatment. Here is some information from the website Cancer and Careers:

The Americans with Disabilities Act (ADA):

- protects eligible cancer survivors from discrimination in the workplace, 

- requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job. Accommodations may include modifying work schedules, reassigning an employee to a less physically taxing position or providing a more comfortable chair,

- ensures that employers must treat all employees equally.

 

janaes
Posts: 800
Joined: May 2016

Kvdyson  thanks so much for your information.  I looked up that web site and looked around a bit.  It could be very valuable as i go forward in thisn journey. its so nice to know where i can look.  thanks for the time you put into looking for that. lots of love janae

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

That's great news, Janae!

janaes
Posts: 800
Joined: May 2016

Thanks beccabtown.  How are things going for you?

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I've been feeling good for 5-6 days. But just in the last two days my hair has started coming out--not in big handfuls, but if I run my fingers through it several strands come out every time. So here we go! I have some caps and turbans that I ordered from ACS, so I hope I'm prepared. My 2nd chemo will be a week from today. 

janaes
Posts: 800
Joined: May 2016

Thanks for sharing your info.  My hair now has a few bald spots.  Its really thin on top.  i havent cut it off yet mostly because im afraid if i cut it off the little 1/4 inch peices of hair will make a bigger mess than my current hair.  I just comb it at night and in the morning and put it in the garbage.   I cryed and felt sad when i was loosing my hair.  I tried to have fun with it too though.  One day when i was sad about my hair my 10 year old daughter grabbed a white grocery bag and tied it around her head so she looked bald.  I took a picture of it and it just helped me feel better.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Hi Jana,

I just wanted to let you know that I, too, have had cancer twice. Once in 2007 (vaginal cancer) and again in 2011 (UPSC) I'm a teacher and worked through both treatments. I had chemo on Friday and took off Friday and Monday during chemo week. The last two treatments were harder on me, so I took off 4 work days and with the weekend had a total of 6 days to recover. I'm very glad I worked during treatment because it gave me something to focus on and took my mind off my problems. My sister who is a retired teacher became my sub during both both cancer treatments, so I knew my class would be in very good hands. This helped my emotional state and enabled me to have some peace of mind while I was at home. I was a little concerned that I'd catch some sort of illness from my students...I was exposed to flu, stomach virus and strep throat, but my school nurse told me to send the students to her if they even complained of a headache, and I didn't even catch a cold during this time. I had bone and joint aches from the Taxol, and took ibuprofin for that. It was gone by the time I returned to work.

I just wanted to let you know that it is possible to work during treatment. My doctor recommended that I work, telling me I'd just be sitting at home freaking myself out over what I read online if I didn't. She knows me well!! LOL! This was definitely the right decision for me.

Good luck while you go through treatment.......it really does go by quickly and it'll be over before you know it.

Hugs to you! 

 

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