pain after treatment

[anmcdonald]

Im new here but lets give this a try. I found out i had non small cell lung cancer stage 3 in May of this year. I went through the chemo and radiation treatments. i was very sick ended up spending 42 nights in the hospital from May till October. In October I had my last PET scan done and was found to have no active cancer cells and the spot on my lung was almost gone and the 6x6 tumor in the center of my chest was now something like 1x4. I am thankful that the scan showed no active cancer cells but I have worried everyday that the cancer is still there. like it is playing another one of its awful tricks on me. also, I have had so much pain throughout this process when does that end? now my joints all hurt, my chest hurts and its still some what hard to swallow and my lung still has sharp pains that run through it form time to time. my hips hurt the most the past few days, it is even hard to walk from the pain. I am just concerned with the pain. could it be the cancer has spread or is this just another side effect from the treatments?

[Deni-stillkicking]

I had joint pain & the area where I had 2 tumors - my gluteus muscle & my thigh were sore for about 4 months after I finished my Chemo and radiation. It's been 2 years since I've had radiation & 4 years since I had Chemo, & when the weather changes, Those areas still flare up & ache! My Dr prescribed me pain medication which does help. Hope your pain improves!

[Jenniferroseolson]

A PET scan should give your doc a good indication of cancer activity (better, probably, since it looks metabolically at activity instead of CT scan). Chemo "ages" us. (I am only 45) And is a necessary trauma to the healthy cells. I have stage 4 NSCLC (inoperable) so receive chemo every 3-4 weeks for the past 16plus months and will remain on maintainance chemo until it stops holding the cancer stable. My Joints are achy, painful and creaky, a side effect of the poison that is my chemo and other meds (steroids like dexamethasone). It sounds like your body is still reeling from all the initial trauma of how sick you were at diagnosis but that the cancer has responded well to treatment. Ask your doctor as nurses and ask again and again . If your treatment center offers a Palliative Care consult, I highly recommend reaching out for a referral to their services that can help you live with chronic disease ( assuming your later stage diagnosis means you are going to be living with this for a while until-i pray-a cure can be discovered). They can help with pain control, a referral to a psychologist to help with the massive emotional piece, and more. My palliative care nurses and docs have made this so much more bearable for me and all who are wise enough to understand that palliative care is not hospice care but is much much bigger than helping patients who may eventually need hospice care.

The fear is so very difficult. I have a friend who defines it as False Information Appearing Real. It is often this unknown that we are so fearful of -- the dark wild imaginings in the middle of the night. Try as much as you can to stay focused on today and keep asking questions that give you accurate info (does your doc think your joint pain is a common side effect? Or does s/he want another scan to be sure?)

Best wishes

[anmcdonald in reply to Jenniferroseolson]

My oncologist done a chest xray and called me the next day to day to say she seen something she didn't like but wasn't forsure what it was. Thus she has scheduled me for a CT with contrast. And my joints are still killing me.

[Jenniferroseolson in reply to anmcdonald]

The joint pain is such an ugly side effect. I'm sorry you are so uncomfortable with that. The chemo seems to simply "age" us. Mine seemed to be worsened by the steroid (dexamethasone/decadron) that I had to take in large doses after surgery to remove brain mets, but I know sometimes steroids are prescribed to help with inflammation/joint pain and can be helpful to some people. I hope you find some relief (other than the obvious "elevate your feet" or stay off your feet or avoid impact activity like running or even walking.)

[anmcdonald in reply to Jenniferroseolson]

I had the large doses of steroids also. It just seems like I'm falling apart at 44..

[Jenniferroseolson in reply to anmcdonald]

I hear you. I'm 45 and often think this must be what I would feel like at 65 if I didn't have cancer. No cancer detectable now? That is absolutely amazing. Congratulations. Focus on that and talk to your doctors about your symptoms (or nurses seem to have great feedback too)

[FtB_Peggy]

Anmcdonald, Welcome! thank you for sharing your story with us and joining this wonderful community. I agree completely with your peers above, please let your medical team know and if you don't have palliative support, please ask for that. Your pain can be better controlled and your team needs to know how this is affecting you - you deserve help. Ask until you get help! Hugs and please keep us updated, we will be waiting to hear. If you need any additional information or help, please call our support line 844.835.4325 or email me at [e-mail].

[lindarahtes]

First let me start by saying welcome to our group and that I am happy that your PET scan was negative. I had a softball size tumor in my lower right lung in March removed but nor chemo or radiation. I still have pain and they really can't tell me when it will go away. I wish there was a magic number they could tell us. My medical doctor gave me Meloxicam (an anti-inflammatory) and that seems to help a little. I also take a probiotic which also seems to help. I hope this is a little helpful for you. Stay well

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@anmcdonald Hi i'm Jo that pain your going thur I have to tell you i'm not a dr. I Am in the same stage as you. When the Dr. at the radiation treatments told me that it would mess up my esaphagus and they would have to put me in the hospital and tube feed me and it would mess up my good lung. I chose not to do it. They removed the upper lobe of my left lung. I took six months of chemo. Iam now in remission and have been for three years. okay lets discuss the pain my side where they had the tubing has hurt me ever since. It can get really bad. Yes I have pain all over. I can only hope it will go away sometime the soone the better. I go to a pain dr and she gives me meds for the pain it helps but not completly. Do you go to a pain dr you never said. but you went thur a lot more than me. I really hope you find some relief from the pain,iwant you to know if you need to talk i'm here and so will everyone else on here they are a great bunch. Jo Taylor

[Hidden]

@anmcdonald Hi this is jo again . We are all living a diffrent live now. Its very hard but I think that you are a strong willed woman. Try to keep your self busy and please try to stop worring about the cancer coming back you know life is too short try to do something you like,or some thing you've never done enjoy what you can. You have a guardian Angel watching over you and she will always be there for you. Jo Taylor

[Emi_bae]

I'm sorry your going through this and hope it's not serious I lost my friend a few weeks ago for the same kind of cancer it was cured but came back and snuck up on her and killed her she was 22 like me please be carefull

[Denzie Moderator Volunteer]

Congrats on an excellent report. You've had lots of good advice so far I hope that helps relieve some of your anxiety.

Let me throw one more possibility out there for your consideration. Where you once you had active cancer you now have scar tissue. Scarring can cause pain. It is not as flexible as the tissue around it.

Whatever the cause of the pain, you may find exercise helps to relieve or reduce it. Start off slow

[Ruthie1950 in reply to Denzie]

Denzie, that is very good advice! Exercising is an excellent tool to not only help with the pain but it also helps to reduce the stress you face each day. God bless you.

[GainesH]

My husband had same thing in April this yr. He's on Opdivo now. How are you doing?