pain issues

kris43

Hi everyone -

I am 9 1/2 months out of treatment and still dealing with pain issues in my lower body. A couple of weeks ago I saw that Saundra had mentioned that she also had pain issues at one point. I am scheduled to see a Rheumatologist in November (took me 6 months to get in) to see if he can come up with a 'reason' for the pain.

So what I am wondering is if you would tell me your own experiences with pain - before and after chemo. Did you have it? Still have it? What you tried? What were you told? The pain I feel is not neuropathy - I've had that in my hands and pretty much conquered it with neurontin and amitriptyline.

I first experienced pain in my hip area almost a year ago - but the oncologist then and now insists it has nothing to do with chemo. This pain is sometimes like a really deep ache in the bones, at other times I have a hard time standing up after sitting, I feel stiff a lot and trying to go up stairs is almost impossible. There are rare days when I wake up and feel pretty good - but after getting busy and working around the house, or trying to go shopping for a couple of hours - I hurt. It is so frustrating.

I will break down and take ibuprofen on the days it is unbearable - but after being on so many drugs during treatment I pretty much hate taking anything. I'm sure you know what I mean.

Thanks in advance for sharing! I am going to take your answers with me to my next oncology appointment and to the rheumatologist. I need some kind of back up so I know it's not all in my head.

My best to you all.
Kris


I don't

saundra

Pain
I have pain in my hands and hips after sitting for a little while. I have trouble making my legs work and walking naturally. The pain in my thumbs and fingers are worse in the morning and sometimes they lock into place and I have to bend them with the other hand. I usually soak them in really warm water and that helps limber them up early in the morning. Walking usually limbers up the hips. I think this is arthritis and not the chemo. I am 70 so it is not unexpected. My oncologist just blows it off usually and said I could take ibuprophen or naproxin sodium and sometimes I do. Saundra

floridajo

Pain
I began complaining about pain during my 1st rounds of carbo/taxol. We knew it wasn't the type of pain from the chemo so my Onc did a bone scan to make sure it wasn't metastizied cancer. Once that was ruled out he didn't know what the problem was and he referred me to pain management. They did mri's and reviewed my ovca record. They determined that because of the amount of ascites and the size of the masses inside of me,that many nerve endings had been crushed /damaged by the cancer. I can't remember all the treatments they tried on me. I know they burned the nerve endings to stop the pain...but nothing worked Finally they decided there were no treatments tht would help me and I was told I'd have to take pain pills. Since then I have also been to 2 more pain management Dr.s when I moved up here to Pensacola..and they reviewed my records and stated nothing could be done for me,refused to treat me(they told me they don't do pain management with meds) and told me to go to my Primary Dr and have him take care of my pain needs..which I did.
I also hate to take pain pills and wish I didn't have to...but without them I have no quality of life!!! This has been almost 4 years now and I am on the same amount of pain pills as ever...so I think that shows that I take them for the pain only...because if taken for the buzz you would need more and more pills. They don't interfer with my life..I drive and take care of myself just fine.
This was rather long,but I hope it helps somewhat. Good luck(((hugz))~~~Joanne

groundeffect

Pain
Hi Kris,

I'm sorry you're having pain so much. My only recurring pain is in my right hip, but I'm pretty sure that's because of arthritis, which seems to get my family in the right hip (my younger sister started complaining about hers way before I did, so I don't feel so bad or old). My onocologist told me that arthritis can cause a rise in a CA-125 level (as any inflammation can), but didn't say how much might be expected. I'll ask him at my next appointment.

Don't let yourself get into too much pain before taking something for it. I know the hospitals want people to speak up when pain starts because it's easier to bring it down early on.

kris43

floridajo said:

Pain
I began complaining about pain during my 1st rounds of carbo/taxol. We knew it wasn't the type of pain from the chemo so my Onc did a bone scan to make sure it wasn't metastizied cancer. Once that was ruled out he didn't know what the problem was and he referred me to pain management. They did mri's and reviewed my ovca record. They determined that because of the amount of ascites and the size of the masses inside of me,that many nerve endings had been crushed /damaged by the cancer. I can't remember all the treatments they tried on me. I know they burned the nerve endings to stop the pain...but nothing worked Finally they decided there were no treatments tht would help me and I was told I'd have to take pain pills. Since then I have also been to 2 more pain management Dr.s when I moved up here to Pensacola..and they reviewed my records and stated nothing could be done for me,refused to treat me(they told me they don't do pain management with meds) and told me to go to my Primary Dr and have him take care of my pain needs..which I did.
I also hate to take pain pills and wish I didn't have to...but without them I have no quality of life!!! This has been almost 4 years now and I am on the same amount of pain pills as ever...so I think that shows that I take them for the pain only...because if taken for the buzz you would need more and more pills. They don't interfer with my life..I drive and take care of myself just fine.
This was rather long,but I hope it helps somewhat. Good luck(((hugz))~~~Joanne

thanks
Joanne - I am going to write down what you've experienced to talk to the rheumatologist when I go next month. I had very large tumors (soccer ball size on both ovaries - don't know how that fits in your abdominal cavity, but hey, they did!) and that might actually make sense. I looked back at my October 2007 caring bridge notes and I was already talking about pain then. I've not had a bone scan, but I never had ascites and my last CA 125 was 9.7. I guess I'll wait and see what this doctor has to say.

Thanks for sharing! Take good care.

Kris

kris43

groundeffect said:

Pain
Hi Kris,

I'm sorry you're having pain so much. My only recurring pain is in my right hip, but I'm pretty sure that's because of arthritis, which seems to get my family in the right hip (my younger sister started complaining about hers way before I did, so I don't feel so bad or old). My onocologist told me that arthritis can cause a rise in a CA-125 level (as any inflammation can), but didn't say how much might be expected. I'll ask him at my next appointment.

Don't let yourself get into too much pain before taking something for it. I know the hospitals want people to speak up when pain starts because it's easier to bring it down early on.

pain
It's been with me for so long now it's just become a way of life. I want to know WHY it is going on and then find out how to take care of it. As I said to Joanne my CA 125 is still low - but the nerve thing could be a reason - something at least to look in to.

Thanks to you and Saundra also for your responses.

Kris

LPack

Kris,
I am so glad I looked
Kris,
I am so glad I looked under pain. I too have pain in my lower back area. I will be having a bone scan to rule out metastasis. My pain started the first cycle of carbo/paxol in my legs but subsided after 3rd. But now the pain in my lower back has been happening since my 7th (last) chemo treatment. Was to have 9 treatments but body became toxic. Will start Hexalen this Monday.

I pray not to have pain for the rest of my life, but I want to live longer to be with my family and grandchildren yet to be born as I am sure we all do! Thanks for each of you sharing. It is good to see what others are going through too!

In His care,
Libby

ladyjogger31

Pain
Hi Kris,
Before I knew I had OVCA stage 3c, I went to a Rheumatologist with the same problems like you have. I was diagnosed with Fibromyalgia.There not much you can do for it. I'm still in treatment and my hips and legs are so painful, sometimes my lower back.I blame that on Chemo or at least that is what my onc. says.Search out Fibromyalgia and see if you have any of those symtoms.Good Luck!!
Hugs,
Terry