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cmb35

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Reply with quote  #1 
First of all, cyber hugs and hopes for a good day to all of you.

OK, because I got a dismissive, "you don't get bone mets in your shin" look from my onc over a year ago, but now the line of pain in my shin bone, closer to my ankle than my knee, is getting more frequent, I have to ask:

How many who have had taxol, and experienced pretty severe bone pain (particularly from knees down) and neuropathy, continue to have pain in their leg/shin 1 full year out from chemo?

Usually, I'm ok with my onc. She's not warm and fuzzy, much more business-like, which has been OK with me. But I find myself hesitant to bring up my leg pain at my next f/u, because she did the medical equivalent of rolling her eyes at me (when the bone scan came back negative) in June 2006, when I first mentioned it.

Thanks for your help.

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Colleen
Warren's Mom Has Got It Going On!
lizws

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Reply with quote  #2 
Hi Colleen,

I have leg pain.  Sometimes it's in the hip area and others its in the knees.  I've had days where it's in the shin and ankles.  Taxol and Neulasta gave me horrid bone pain.  There are times at night that I can't get to sleep without pain pills for the pain I have in my legs.  I have found that the warmer weather this summer and walking and exercising helped.  I feel it coming back with the cooler weather though.

I understand the not wanting to say anything to your oncologist.  Remember though, she works for you.  She is your employee.  You dictate what is done where your health is concerned.   My oncologist told me this awhile back.  Now I realize not all doctors will think that way but if you have a legitimate concern then you need to get it addressed.

Hugs
Liz

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FLLoriK

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Reply with quote  #3 

I have leg pain alot and I often wondered which med. caused it. I would not let your doctor's  attitude influence you If the scans are negative, it might be time to see someone for pain management. Neurontin is very helpful. But there are others on the market too. Please check into going to a pain managemnt clinic or doctor.

Indigoblue

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Reply with quote  #4 
Just wrote a too long post about the leg, hip, shoulder, arm, breast, breastbone and spine...oh, neck, feet and hands.  Skull.  Headaches.
Started during the Taxol x 12, got worse during the following 32 Rads, and really "hit me" 4 or 5 months following the last radiation last year on Halloween, 06. 

Fatigue was relatively unknown to me, and midway through radiation, both knees collapsed, I fell, and they swelled up like basketballs.  They still hurt.
The hip and thigh pain were totally unexpected, as well as the shoulders and both arms.  Anemia, low blood counts, celiac disease, arthritis, and our favorite chemo treatment all can contribute to the "cumulative" effects which may last anywhere from one day to two months, a year, three years; a lifetime...they just don't know. 

Seems like all the doctors blame either pre-existing conditions or the other treatments a patient had during the long haul of breast cancer therapy.
I was told to take Ibuprofen and exercise, see physical therapy and try swimming.  Thank goodness my family doctor is understanding and compassionate when it comes to pain and fatigue.

She prescribed Tylenol 3, which I don't like to take; intestinal problems feels like I ate glass.  Valium and an aspirin help when it's really painful, and I've found that light walking, lots of water, sleep when I can get it (pain), and rest have given some relief. 

Had a PET Scan full body, and Cat Scan of the Brain; will see the oncologist Thursday to discuss the results.  Also had a test for the allergy to wheat, rye, barley, oats; Celiac Sprue Disease, which affects the villi in the small intestine and don't allow nutrients, like iron, etc., to be absorbed, resulting in anemia and malnutrition, joint pain, muscle aches, and skin rashes. 
I have every symptom, and family members who were dx with Celiac.
We have so many gene pool ailments, our family should be "closed due to RIP Currents, Jellyfish, Sharks and polluted cell-shells.  Receptor Negative all the way.

I suspect there are many unknown factors waiting to be discovered.  Mets is a scary prospect, and I cannot help but wonder which came first (the chicken or the egg) the cancer micro meltdown, or the tumor?  Is it in the tissues? It does mutate; and no matter how much I read, I am not convinced anyone really understands the side effects of treatment or how breast cancers really operate...after all, they do communicate...receptors and receivers all through our cell manufacturing system. 

I wish I was intellectually capable of grasping all the sophisticated research; as a happy idiot, I can only compute the simplistic factors which make sense to me.  It is called OUCH!!! I need the couch!

Hope you all feel better, and find relief somewhere.  It's so difficult to do simple things when you are gripped with needle/nail/achey/breaky PAIN.

You are in my thoughts, prayers, and hopes for a good and better today, tomorrow and all the days to follow.

(((hugs)))

Indi
cmb35

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Reply with quote  #5 
Thanks for the answers ladies. I know, I do know better about the onc, and I will tell her at my next appt (Dec), but I hate that look - do you know that look? When they invent the "your cancer will never return, recur or metastasize" test then we can all stop having canceritis. Until then, don't tell me to be in charge of monitoring my body for symptoms and then roll your eyes at me when I have symptoms! I once read an article in the Sunday Globe about urinary tract infections, and then promptly developed the symptoms - I am that crazy (or Irish - take your pick! LOL)

Anyway, now my left arm bones are hurting, including the wrist, which happens on and off, and despite the fact that I KNOW it's the lymphedema, I'm going down the path of arm mets now. Just one of those weeks I guess.

Hugs to you all

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Colleen
Warren's Mom Has Got It Going On!


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Reply with quote  #6 
CMB-Cancer, the gift that keeps on giving, huh?

Amy
cmb35

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Reply with quote  #7 

Amy - Exactly! Good luck tomorrow, I'll be thinking about you!


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Colleen
Warren's Mom Has Got It Going On!
Boo46

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Reply with quote  #8 
Colleen - I am also 1 year out of chemo this month and still have lots of leg pain. Mine started during taxotere. Actually had pain in every inch of my body with taxotere. Things have improved over time but 1 year later I still have constant pain from the knees down. It is the worst in my feet and ankles. I keep hoping it will improve also but the improvement stopped about 2 months ago and this is what I'm left with. I live on ibuprophen and that just takes the edge off. Never asked for neropathy drugs because I have no numbness or tingling so I'm not really sure it is neuropathy. I see my onc. next in Jan. If it is stll going on then I plan to ask to try neuropathy meds. I walk like an old lady!
I sure do understand the canceritis also
Hugs,
Sue
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Reply with quote  #9 
Boo, this is what my onc told me when I asked him about leg/joint pain from the abraxane:

"If it goes away it won't be permanent."

Yep.

He really said that!

Soooooo, taking this statement to that illogical conclusion- I guess if your leg pain hasn't gone away it IS permanent.

Don't you feel better now?????


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Indigoblue

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Reply with quote  #10 


My scans are supposedly clean...great, so glad.  I have yet to see the report.                                                                                     
Celiac Disease came back negative for any evidence of the disease.  I am     physically in pain, and now they are back to the "dromes". IBIS, Fibromyalgia, and all the other make believe illnesses that are not properly diagnosed         because there IS NO TEST!                                                                  
PET Mad today, because I took in a sick little half drowned almost done for   kitten.  I did NOT bring him into the house, for fear he might infect my other animals with "who knows what disease".  He lived on our back porch            (enclosed) for over a month before the Veterinarians said he would pose no threat of illness to the other animals.  THEY LIED!!!                                 
                                                                                                      Husband to Sir Dorian Gray to the veterinarians.  I spoke to them at least 7 or 8 times listing the panel of tests which are important.  My brothers animals were exposed to PARVO when one of his dogs was "at the Vet's having an    operation for removal of his testicles.  He died when he returned, and when tested he had parvo, and all the dogs were exposed.  Of course, FIP is a      form of Feline Parvo, and FIV is a form of Feline HIV; and here's a new       one...Herpes; causes coughing, sneezing, a respiratory illness.  They claim there is NO TEST, for the and a few other illnesses.  They also did not test for Whip-worm, coccidiosis, and some other parasitic diseases.  It's over a month, and Sir Gray is still sneezing and coughing.  He is thin. He has been back to the vet three times, received his vaccinations and boosters.        
                                                                                              Now they tell me bout the "No TESTS for certain illnesses, and that I may have to have my animals euthanized.  I have gone to this clinic for over 25 years.      The veterinarians I originally loved and adored retired.  The new doctors have attitudes and I am so furious and upset I don't know what to do or say.      
The animals have the option of taking expensive medications for this Herpes Virus which I have never heard of; what is this?                                     
                                                                                                     
I am beginning to think the entire medical world, including animal, human, and even beyond; is corrupt and vile.  How many of us are told we don't need an MRI or a test we know, in our hearts, will find the early signs of cancer or   some kind of disease.                                                                        
 
My oldest brother had diabetes for over 20 years before an EYE Optometrist, Optometrist, not Ophthalmologist discover he had macular degeneration and sent him to an Endocrinologist which simply did the blood test and said he had diabetes for years.  He had eye  surgery, heart problems, and endless medical expenses because his idiotic FAMILY Physician could not, didn't,    wouldn't do a simple blood test.                                                         
 
I have a pain in my hip, leg, and hurt.  The physicians, particularly the oncologist and surgeon, refuse to take any responsibility in either explaining the faulty testing procedures or the overwhelming side effects from treatments, often expensive and ineffective, anyway.  I am boiling...
 
As far as I am concerned, they are all a bunch of poops with big egos and most should be call PIA's; Pain in the ASS.
 
Sorry Gina, and everyone, but I am so mad right now, and so tired of being given the run around, except for the bills, the bills are always on time and usually exactly to the penny. 
 
Hoping I'll get over this.  Am I the only one who questions these doctors?
Don't we all get a little tired of going around and around for years before they FINALLY take us seriously.
 
I was reading "Studies in Pessimism", famous philosopher Schopenhauer's (Arthur) views on women.  What a schmuck!  I thought he was the best back in "the day". 
This breast cancer, medical jargon and lies, lies, and more lies from the pharmaceutical companies, insurance companies, and doctor companies needs an overhaul.  Now the Veterinarians are getting on the greedy bandwagon.
 
There is no excuse for inhumane and dispassionate medical personnel.
They sign an oath.  If they cannot live up to their Hippocratic oath, then they need to be given a job cleaning up poison plastic and garbage hospital waste products.
 
Please forgive my rage...but I am sick and tired of the outrage!
 
Love you all, I know most of you "get it".
 
Indi


* I chose to use the colors I belief many medical EMPLOYEE'S think in, regarding "color thought-process", and this does not mean all, but I sometimes wonder if they only think in terms of PINK,BROWN, and $$$$$$$ GREEEEEN!

 

jenni__ca

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Reply with quote  #11 

cmb ... hugs ... i feel like i'm trying to walk the fine line between being "aware" and being a hypochondriac ... but at stage 3a feel like i'd best be aware ....


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nosurrender

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Reply with quote  #12 
Indi, there is a test for FIP for cats- I know because my friend is a cat breeder!
I hope you pets are OK!!!! That is so stressful. There is something not right about Mr. Fluffy lately too- and I am really scared.

I can't spell this type of doctor but it is a psysiatrist and it is a REAL MD who also is an expert in Physical Therapy.... I know I need to go to one and I think you could benefit from one too. THey help our body from a medical point of view incorporating the PT focus.

I hope you feel better. Did your hormones drop from chemo? My onc told me that our joints ache from lack of hormones too....

Please kiss your furbabies for me. And don't give up on YOU... Find the help you need!!!

Hey there Jenni, I know how you feel and sooo get it! IT is a fine line but I am of the firm belief that hypochondriacs live longer because they make sure they are always checked.




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