Symptoms of Recurrance, What are they?

Hi Indigoblue,

I do recall that when I had finished all my treatment and was expecting to start feeling better I actually felt awfull.  The least bit of exertion and I ached as though I had just run a marathon.  I would get aches in my ribs, kidney area, my right hip, legs, arms, shoulders, some days my bones ached. My feet hurt and my little finger - yes little finger!! - ached so bad it kept me awake at night.  Each day I ached or hurt somewhere different. And I was so lethargic, I could sleep for twelve hours no problem.  I apply the two week rule, if it still hurts after two weeks I get it checked out.   Our bodies have taken a big hit with all the treatment and need time for them to recover.  I'm now three years out and still ache all over if I do too much.  

Hugs to you , gentle ones so as not to hurt you.

I'm wondering if any of you ladies with pain (especially nerve pain) have tried acupuncture?  I myself don't have any experience with acupuncture for pain (I do acupuncture for nausea & bloating), but I'm under the impression that it is supposed to help.

Hi Indigoblue,

I have been so upset about the way I've been feeling and have so many symptoms similar to yours. Tomorrow I have an appointment with another oncologist in my hospital who is in a palliative care unit and I have a list of over 30 questions -14 of them describing symptoms I am experiencing.

It seems that the doctors world over think that these pains are due to anxiety. I wish they were. I have prepared myself to stand for my rights to be checked and diagnosed before being written off as a hypochondriac.

I want to know what's casung all these pains and make sure it's not a 3rd recurrence of the cancer.I also had taxol and carboplatin. I too take advils and feel like I wait for the next "fix". It's quite humiliating.

 I too am very concerned but the worst is the nagging pain.

As I mentioned above, I feel I have no choice but to go doctor hunting until someone will listen. I am debating whether to push for a pet scan because I'm aware  of the radiation and the sometimes false results. That test has been however the most conclusive.This by the way is after I've had a bone scan and biopsies that are negative, thank goodness.

I can only thank you and the others who have shared this big problem-  at least  I know I'm not alone. I do hope this helps you too!

Rena

Hello Shirlann:  I always search for your posts because you know so much about this disease and I'm really still learning.  I'm relieved to know I'm not the only person with major pain in the legs and other weird spots.  It's just calming to know that every ache and pain doesn't mean I have cancer in another place as well as the liver. I'm reading Dr Susan Love's brest book it's the fourth addition and I'm wondering if I shouldn't have looked for one thats more updated I'll look next week when I see my onco.  Last night I dreamed that I had to have more chemo and it came out of a little box with a tube attached and it went directly into my arm.  I guess I'm really worried about the Enzyme deficifiancy study because the results if I'm negative could mean that the F5U didn't work or it's to toxic for me.  But the Docetaxel kicked the crap out of me and I'm still hoping to wake up one morning with more energy. What I wouln't do for a clean home, but I find I can only do the basics and I lay in bed and look at things I want to bag up and donate or just throw away. Is it normal to retain alot of fluid from Dox and do you have any idea how long it will take to leave my body without fluid pills they absolutely don't agree with me, they make me feel like I'm underwater and everything is fuzzy and in slow motion. I've even tried fluid pills with extra potassium thinking it would make a difference but it doesn't.  Last night I really looked at my left shin and it looked swollen and feels like there is a dent in it, compared with my right leg and no dent in the right leg.  So I'll ask my onco and hope she takes it seriously but I too am wondering if I'm worrying myself "sicker" (is that a word). Maybe I'm just expecting to much from myself but I do appreciate your posts and everything I learn from them. Thank you.

Hi! I am not triple neg, but I am a self-proclaimed expert on pain management! After my Mast and Node Dissection (11 were removed), I had excrutiating pain. Ribs, chest, armpit, arm...it actually felt as though I had sheets of sandpaper under my skin...It was horrific. A team of Drs from the burn unit of the hospital I had the surgeries done at was brought in (Loyola Univ. has a great burn unit). They prescribed a Vicadin and Gabapentin combo 3x a day. I got about 60% relief, but after a while, I just couldn't handle it anymore. I was then given the Phentanyl patch...had a really bad reaction and ended up in the ER with involuntary muscle spasms and dillusion. My dh freaked...he thought I was dying! I was desperate. The Drs, starting looking at me as though I had a third eye! I'm sure some thought it was psychological. After about 8 months, I told my Onc I just could not go on any longer. I was managing to do my daily "life" but the pain was always there. Finally, he suggested a pain managment specialist. I immediately went to him. He gave me 3 pain blocking injections in the areas that hurt the most. Within 2 weeks, I had about an 80% relief. And after a month or two, that percent increased. Supposedly, the meds used in the injections are frequently also used in back pain patients. Unfortunately, I still have some lingering pain, on and off, but it's tolerable. If I wear a bra or anything that's tight around my chest area, after 3-4 hours, I get some pain. I cannot remember the exact meds that were used in the injections, but I could certainly call the Dr and ask what he used...if any of you would like to know the specifics just let me know.

I truly feel for you...this is a very difficult thing to deal with. Especially when all you really want is to get on with your life and put it all behind you.

Best wishes to you girls! I hope this info helps!

this is so weird to find that others have had similar symptoms that i've been experiencing for weeks...i just thought i was a freak...about 3 - 4 times a day i get a sharp and breath-taking spasm in my right ribcage...affected side where i had all the radiation.  rads were complete at the end of August. 

I was diagnosed at the end of January, 2006 - IDC, 5 cm tumor, Stage 2, 0 nodes. Had 4 AC and 4 Taxotere, then a lumpectomy followed by 36 rads. Finished all that January 2007. It's been 2 years!! and I am so tired, have no motivation to do anything - have to work but once I get home just want to sit on the couch, drink wine and veg. I used to exercise, read a lot, etc. Now I just don't care! (maybe I need a shrink!)

It helps to read that I'm not the only one feeling this way. I try to tell myself to snap out of it, but it's not working.

When I finished all my treatments, my onc told me that I'd have to see my primary care physician for my routine care - I knew that but I felt like he was dismissing me!! I do go for follow-ups - have a mammo and appt. with him in April and in October and then once a year. I would have dearly loved to hear him say come in anytime you are worried, like Shirl Ann's doc did.

I don't know if I'll mention anything to him about how I've been feeling, but think I will get my thyroid checked. It was fine last year, but who knows! I'd love to have a solution for the fatigue, thin hair and weight gain!

Jackie 

Just thought I would add my two cents regarding my Mom. I've posted on some other threads, most recently that she had completed taxol/carbo course after a recurrence. She had mastectomies 11 and 12 years ago with hormone positive cancer, some chemo then, and had been cancer free for 10 years. Then last Summer fluid built up around her lungs and heart and there were breast cancer cells in it. She had to have it drained and then the chemo kicked in and she did real well all throughout chemo. Now that she is a couple months out from chemo she actually feels somewhat worse. Lately she has been constipated(we think her diverticulitis flared up), running slight fever, pain in lower back. Her bone scan last Summer was ok, and her ct scan a month ago of chest and adomen was ok other than tiny bit of fluid still. Tumor markers were coming down. It's just so frustrating to see her feeling worse AFTER finishing chemo. And of course the natural inclination is to think any little pain is the cancer somewhere! She found a little bump on her sternum, but she can't remember if it has been there since her open heart surgery a couple years ago. The Onc felt it and didn't think it was anything, but to watch it. He thought it moved some, but I thought it was bone, who knows? Maybe its just the way her breastbone healed from a couple years ago. How long can we expect the chemo to do the trick before she has to take another treatment? I guess its different with everyone. I don't think you could call her NED just yet. Onc hasn't used that term, do they like to? I feel guilty whining on here as I have just read some other threads of people in much worse condition. Thanks for listening, prayers to all, Rod.

I was having joint pain shoulders, neck, ankles, knee, hips, trigger thumb, finally went to a Rheumatologist and was diagnosed with Rheumatoid Arthritis. My oncologist told me that I've probably had it for a while. I worked every day fulltime except treatment days and he told me that was probably because the chemo actually made me feel better (?!)  Rheumatologists TREAT RA with chemo. Onc said all his Rheumy patients feel better on chemo for b/c.  He also said that BECAUSE of the chemo, my RA was exacerbated. It really kicked in big time after all treatments stopped. Couldn't get up from the floor, couldn't walk without aching, thumb kept locking and needed cortisone shots below my thumb. Now on Plaquenil and it has made a world of a difference. Still have joint pain, but it's not getting in the way of my life anymore. Motrin helps during the day or at night when I get particularly achy. I have found that doing YOGA at night relaxes my body and I sleep  much better now, not to mention feel more limber with all this joint pain I get. HOPE THIS HELPS SOMEONE