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Brooks (Just4brooks) checking in

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just4Brooks
Posts: 987
Joined: Jun 2009

Hi everyone, I thought that maybe afer a year away I'd check in to see how everyone is doing. As for me I'm doing okay, I'm now just a stay at home dad do to all of the post cancer problems with Oxaliplatin-induced neuropathy and my extream leg pain. It's hard at time to accept the life changing facts that I can no longer work but I try to do my hobies and keep up with the kids and there after school activities. I'm wondering if anyone else have neropathy from the Oxaliplatin and/or does anyone know if we can file a lawsuit from the dammage. It not only affected me from my hips down, it's nessed up my hands so now I cant work with small things and I drop things all the time. Its caused damage to my bowels and has caused me to have severl surgeries and now a colostomy bag. My legs hurt all the time.... Anyways, things are okay. Cancer is still gone 3 plus years after chemo and I'm very happy about that.

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm happy you are doing ok,but I'm sorry about your neuropathy.I had the same problem,but it turned out that I had a tumor in my spine.Have you tried Pt?I am doing it now,and it helps with my walking.I'm glad your cancer is still gone,hang in there.Mine came back again,so I hope you don't have to have anymore surgerys.I hope you don't have any more problems.Good luck. 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

that you have no evidence of cancer three years out from your treatments.  I bet your kids love having you home as a stay-at-home Dad, even though it sounds challenging for you because of your health issues.

The neuropathy side effects you have experienced sound extreme.  Could you explain a bit more how the neuropathy affected your intestinal tract that resulted in surgeries and a colostomy bag?  Did you have frequent bowel obstructions as a result of a decrease in nerve function in the gastrointestinal tract?  I know that this can sometimes occur in patients with diabetes. If your surgeries are a result of frequent blockage, I imagine you are much more comfortable now - not happy that you have a colostomy bag, but likely much more comfortable.

Hmmm … medical malpractice suit for side effects resulting from cancer treatments? I know that when my husband had treatment, he had to sign waivers that he would not hold the hospital or the doctor liable for his treatments.  The risks of each treatment were clearly defined, including the risk of death. Seems unlikely that one could win a lawsuit from the damage that results from treatment.  There have been some class-action lawsuits where the pharmaceutical companies that manufactured drugs that harmed folks were sued but you have to prove that risks have not been adequately disclosed. As hard as things are for you and as strong as the desire is to fight back after your life has changed as a result of this disease and treatment … I bet you have better things to do with you life/money than get into a lawsuit … like spend time with your family and enjoying a life free of cancer.

Peace. ~ Cynthia

just4Brooks's picture
just4Brooks
Posts: 987
Joined: Jun 2009

Hi Cynthia, I'll have to go back and look but all my docter told me is that I will have a reaction to the cold and that after chemo it goes away. At no time I was told that it could or might cripple me or I would have done a diffrent treatment. The Oxaliplatin caused adhesions in the intestines with frequent bowel obstructions. I've been hospitalized many times for blockages and have had 4? or 5? surgies to cut out the damaged tissue and now a clostomy bag.   

I dont know how the drug company can put out a drug that can cripple people

jen2012
Posts: 1189
Joined: Aug 2012

I guess because if it could save your life, it's worth the side effects.    Yeah it sucks.    My husband just started up again and his doctor sat there for a good 5 minutes and read over all of the things that could happen...explained how likely there were to happen...asked if we had any questions.  Then had him sign the waiver.   My husband is taking gabetentin/neurotin (I'm sure I spelled both wrong) to help with the neuropathy.  It seems to help a bit.    Most of the staff doesn't understand what the chemo truly does.  I overheard one nurse telling some man on Friday that he shouldn't have any side effects of his chemo, he'd be fine.  Hmmmmm...seems like they all come with some side effects.    You might want to try acupuncture too - my husband had some relief after 1 session.   Enjoy the kiddos!

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Informed consent forms for treatment … states differ regarding these consent laws.  Some states have laws that require ‘reasonable’ information be given and other states require ‘full and complete disclosure’. You might find in your complete medical records that even if you did not sign a form of consent, there is documentation that potential risks involved in your treatments were discussed.  I don’t think they would have said ‘if you take this treatment it may cripple you’ … they probably just summed it up as having a potential for harm, but most patients tolerate it.  Their goal was to try to use the tools at their disposal to help you not die from your cancer and treatments are justified as the benefits (you living) outweighing the risks (neuropathy, etc.)

Drug side effects … it seems every drug and every treatment has potential for serious side effects. Have you seen those commercials where they very rapidly go through a number of potential problems that can result in taking something as seemingly harmless as aspirin?  Once you have cancer … every chemo, radiation, surgery … any of these things can result in mild to serious side effects from temporary to permanent.  I understand your anger but I doubt there is anything you can do with that anger except deal with it, find some way to have peace, and make the best of being cancer-free. 

Adhesions … I don’t have any personal experience with adhesions. Hopefully someone else will have some additional information.  I do know that gastrointestinal symptoms seem to be one of the most common of all the chronic side effects of cancer treatment and have a great impact on quality of life. It likely would be hard to prove that it was the oxi that resulted in your adhesions because chronic inflammation, drying of mucous membranes, ulceration, opoid drugs, bacterial overgrowth … so many things can be attributed to adhesions and obstruction.  

Neuropathy … is so damn challenging as many here report.  My husband, who was a sculptor and worked with his hands a great deal creating kinetic sculptures … got to the point where he could barely hold a tool and forget about picking up a screw or bolt. Our son became an extra set of hands for him. He had a great deal of discomfort as well.  I deeply sympathize with this condition. Have you tried Cymbalta? Effexor? Elavil? Some people find relief from one of these antidepressants.  My elderly mother uses lidocaine patches and she sees improvement. I don’t know how you feel about medical marijuana but it can have a significant pain-relieving effect for some people (you can eat it, you don't have to be smoking it around your kids).  And then there are painkillers, but they can bring there own set of unwanted side effects. 

Neurontin (gabapentin) did not bring my husband relief but massage, acupuncture, and soaking his feet and hands in warm paraffin baths did help.  He also took the universal antioxidant alpha-lipoic acid. If you are interested, here is a link to an article that lists complementary and alternative treatments for neuropathy:  www.pnhelp.org/index.php/download_file/view/116/‎

Sounds like you have had a hard time, I hope things improve.

Peace. ~ Cynthia

 

Annabelle41415's picture
Annabelle41415
Posts: 4210
Joined: Feb 2009

Glad to see your update but sorry you have had such extreme neuropathy.  Mine is permanent and although it has gotten better, it has never gone away and the cold weather makes it worse.  After telling my doctor in October that mine has never gone away she finally said "yes, it is harder than we thought."  Geez - ya think so.  Think it's more of your doctor not telling you than the drug companies.  She never lowered by oxy even though I'd asked her a couple times.  I'm taking gabapentien and B6 daily.  It helps some, but will never go away but it's not debilitating like yours.  It was good to see your avatar again.  Keep us posted.

Kim

PatchAdams
Posts: 272
Joined: Nov 2011

Hey Brooks,  I remember having to sign papers 5 years ago saying I understood what problems the chemo might cause.  I don't have the leg pain (colon, not rectal) but I have your same problems from the oxi plus L'hermitte's sign. My onc said if I ever used oxi again, he'd be putting me in a wheel chair for life. 

The 5FU messed up my sinuses and I've had almost constant sinusitis, swollen sinuses, etc.  That's probably the drug that messed up your bowels.  

janderson1964
Posts: 1535
Joined: Oct 2011

We all have to live with permanant side effects from chemo surgery and radiation. That is the nature of the beast to survive. I constantly see adds for lawyers offering to sue drug companies for side effects. I think they are as bad as the personal injury lawyers. Those lawyers have thier place but not when they are exploiting an ubfortunate situation out of greed. I am not defending the drug companies. I think they are driven by greed as well. However  I feel that the FDA approvaln process is way too long for approving new cancer therapies. There are several very promising immunotherapies in trials now now but could be several years before they are approved. Many of us are out of options and dont have years to wait. I am sure if we all decided to sue the drug companies it would slow down the approval process even more since the FDA would bebmore concerned about lawsuits.

Be happy that you are NED. I have nueropathey as well as several other issues but I am NED at the moment and thankful every morning that I wake up.

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

That's a huge deal.  Getting to be here for your kids and wife...you are truly one of the lucky ones.  There are so many here who have gone on, who would have put up with any amount of suffering to stick around and be with their families.

That said, I also understand how exhausting and frustrating it is dealing with the long-term side effects.  I have pretty severe joint damage from one of the chemos that I did, as well as quite a bit of neuropathy.  I can't get through the day without several doses of pain meds.

I got pretty depressed and grumpy about this over the summer.  I love to hike, and it really hit home that I may never be able to go on a long hike again.  I also gave up my job, which involved work i loved.  I don't imagine I'll be able to get back to that either.

It reached a point where  my husband became really frustrated with me, and honestly, I was kind of frustrated with myself.  I'm trying hard now to focus on the things that I still can do, and accept that the price I am paying is the price for staying alive (I'm suddenly hearing the Bee Gees in my head).

Anyway, you sound very frustrated, and with good reason.  Have you talked to your doctor about your continuing symptoms?  I think that there might be some things out there that could help...something like what I take for pain (Vicodin) might help with your legs, and I can function on it without too much difficulty.  There are other drugs too that are given to help with neuropathy.  And I believe that there is a fair bit of research on how acupuncture and massage therapy can be helpful with neuropathy as well.

On the work front, I am thinking about taking some online college classes to get my teacher's certification.  I don't know if I'll ever be able to use it, but I need something to look forward to in the future.  I wonder if something like that might be of interest to you?  Online can be done entirely at home, and there may be a line of work you could get into that would be doable with your present condition.

I hope you don't mind all this advice.  I'm being a busybody, I know!  It's just that I hear in what you wrote a lot of what I have been feeling this last year, and just wanted to reach out to you and give you some encouragement.

Big hugs~AA

coloCan
Posts: 1842
Joined: Oct 2009

my neuropathy is in the bottoms of my feet and never affected me he way it did you (have used a cane when away from home since surgery); i've had some radiation damage to my spine and my mind has not returned to what it was prior to treatment but bottom line is we're still around to complain about things....By the way, a study published past week indicates that for stage II and Stage III rectal cancer people doing preop chemoradiation,Xeloda with radiation was given the edge over 5-FU and radiation and both Xeloda and 5Fu with oxi,finding oxi to provide more toxicity than efficacy (i always thought oxi was the powerhouse being that it messed me up so much-both preop with Xeloda and radiation and postop in FOLFOX)).....

From the East Coast to the West:keep on truckin......steve

just4Brooks's picture
just4Brooks
Posts: 987
Joined: Jun 2009

I think that a few might have misunderstood what I was saying. Yes I'm very happy to be alive and cancer free. To live each day with my family is a blessing and I hope the cancer beats never visits me again. Now as far as my neuropathy goes. I'm really not looking to file suit with my doctor or really anyone else for that matter. Its more frustrating to me then anything else that my neuropathy is as bad as it is and that it has basically crippled me. But in no way am I un-thankful that it probably saved my life at the same time. I just wish I was told at the start (and maybe I was) that it could cause the kind of damage it did. I was hoping that someday of returning to work but I see now that it may be just a pipe dream. Walking, standing, or sitting in a upright chair for more then an hour just kills my hips. Even driving is painful after about 45 mins.  I can't lay in a bed for four then a few hours before it just starts killing my legs. Then I neen to go to my LayZboy chair. This is a every day/night ordeal. I'm on a 50 mgl's Fentanyl patch and take oxycontin pain mids PRN. None of the nerve meds really did anything to help with the pain. I've seen every doctor that might be able to help me that I can and had hit the end of the road as for as my neuropathy goes. But if this is all I have to worrie about then it's all good.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

experiencing now with the debilitating neuropathy ... Would you have taken the chance and not used the oxi knowing that perhaps you would not be cancer-free now? Impossible question probably but something to think about. I bet back then when you were newly diagnosed you were very eager to get the cancer out of your body and throw every weapon at it.

I do think you have had an exceptionally hard time it sounds ... the pain, the loss of your employment ... this damn disease just changes everything about one's life it seems.

Wishing you the best.

Peace. ~ Cynthia

 

 

Jaylo969
Posts: 826
Joined: Jan 2010

Hey Brooks....Good to hear from you although so sorry that you are having so many post chemo problems. I too have neuropathy in hands and feet, am unable to work, and have sleep problems due to the pain in feet and legs so yes, I feel you and it IS downright depressing.

As for myself, I was NOT advised pre chemo of these side effects but was given some literature as they were giving me the 1st infusion. All my onc had discussed was nausea & diarrhea, of which I had neither. I took Folfox for 5 treatments,  and I was having to use a walker when my Doc cut the oxi and put me on Xeloda pills. Too bad...the damage was done. No way that I knew that might happen because I actually had a choice. Being stage II I could have opted out or maybe my Doc could have just given me Xeloda only? And here I am 4yrs. later and if I knew then what I know now I would have opted out of oxaliplatin and asked for just Xeloda....but I didn't know so onward & upwards!

Anyway, just wanted to let you know that you are not alone and on the bright side we are Survivors!! Damaged survivors, but we ARE survivors.

Take care Brooks and I hope things ease up a little for you. Constant pain is a real source for depression.

-Pat

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

Hey Brooks,

good to hear from you I don't know if you remember but we joined the forms about the same time, we had approximately the same diagnosis and started treatment treatments (slightly different time tables) at about the same time.  We have even had similar results -  I now have an ileo after 2 years of hell after my reversal and suffer from permanent neuropathy, though not as severe as yours.  Sorry to hear yours is so severe.

My oncologist was a researcher at Sloan-Kettering prior to entering private practice.  He gave me the full Monty as far as the effects of chemo goes.  Scared the crap out of me. Still, like you, better to be alive than not and I've been able to enjoy time with my grandkids which I would not been able to without treatment and obviously better to be informed than not.

good to hear you're still alive and kicking.

peace 

Rick

maglets's picture
maglets
Posts: 2401
Joined: Jun 2006

ahhh Brooks I am so sorry you are suffering all these side effects.  Just adding my 2 cents to long list of suffering survivors.  When I was doing oxy I remember my darling onc saying...." well maggie I have put one patient in a wheel chair and I hope to never have that happen again"  Poor lady.....she worked so hard to prevent neuropathy while trying to get the max cure from the drug.....glad I was not walking in her shoes.  I too find standing and walking hard from the pain that develops in the feet. I do not seem to be able to digest anything more fatty than a carrot....but what the heck??/ still going.....

all the very best to you Brooks.....sounds like you really did take a kicking.....sending love

mags

Trubrit's picture
Trubrit
Posts: 1345
Joined: Jan 2013

Here is my happy man for the ups  and a unhappy man for your downs .

I am glad that you are able to be 'around' for your family. It does sound like a real struggle with contuinued side effects though. 

I am six month out from ending my treaments, and have several ongoing issues which are inconvenient, but when push comes to shove, I'll live with them as long as I can 'live'. 

Still, every now and again it does get discouraging; especially when I can't do things that used to bring great joy. With my bowel, neuropathy and joint issues, I can no longer go on extended bird watching trips. No going out into the wilds of (barren) Nevada when I need to have a BM every hour. No trees or bushes to hide behind here. HA!

Just know that we're all here on the journey with you. 

Helen321's picture
Helen321
Posts: 733
Joined: May 2012

Your a stay at home, hands on alive dad and I bet your kids love it. I have problems using words, painful feet, painful hands and painful hips.  I am really slow since the surgery and have no core. I have an ostomy also but that was because of the cancer.  Hang in there!

Helen321's picture
Helen321
Posts: 733
Joined: May 2012

My doctor told me the risks of permanent damage. It was chemo or cancer. Chemo won. My doctor also said that these things could taper off after 2-5 years. I'm hoping that is so.

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

 

That's the first time I've heard that...I was told whatever improvement you have by two years is probably all that you will get.  Good to hear that things might still be on the upswing for many of us!

Kathleen808's picture
Kathleen808
Posts: 2283
Joined: Jan 2009

Hi Brooks,

It is really good to hear from you.  I am glad that you are cancer free but I really feel for you with the after effects.  I am very sorry you have been so injured by the treatment.  

Stay in touch.

Aloha,

Kathleen

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

I see you on facebook all the time, but it's nice to see you here, too.

 

*hugs*

Gail

thready's picture
thready
Posts: 475
Joined: Sep 2009

Hi Brooks 

i started a bit before you.  i'm rarely here just stop in now and then.  Wanted to let you know that oxcy has left it's mark. Like you I'm  grateful. But there is a new normal.  

Jan 

feb753
Posts: 1
Joined: Feb 2014

I was looking for the answer to the same question as yourself, and stumbled on to your post...in fact, I had to join this site to connect with you. My husband is suffering from many of the same issues you are, and he is crippled, as well, in fact, that aspect of this treatment may have him being in a more severe state with regards to the disabling mobility. He is almost 2 yrs. out from the diagnosis and has not walked for appx. 16 mos. He also was never told that this was a possibility, even though there were significant signs of damage that were reported earlier in the treatment process. He has been spared the problems with his bowels that you have experienced, at least so far.

I am anxious to learn more about your situation, and perhaps together, we can arrive at some sort of solution to an obvious violation of your body. Believe me, I do understand how you must feel. We don't enjoy much celebration here either. It's not as black or white as saying life or death. My husband was an active 61 yr. old that now has been reduced to a very depressed, homebound, invalid. It is way too painful to sit for even brief periods of time, so using a chair isn't the ultimate answer. He has not been able to drive or even leave the house without assistance...and then it is just to another medical appt. for well over a year.

Are you aware of the black box warnings on each individual vial of oxaliplatin? I have wrote and spoke to the manufacturer, but I certainly didn't expect to learn much from them. Our oncologist even refused to allow us a visit when all the side effects arrived that made mobility impossible. We were stunned, and completely clueless as to what was even happening, and no professional in medicine that practices locally seemed to have an answer either. You are the first person that I have ever heard of as having the same type of problems, and while I am very sorry for you, I don't think we are "crazy" anymore and definitly not alone. Perhaps the saying that finding strength in numbers can apply to us. When a person has been robbed of even the simple daily activities, it gives a whole lot of time for thought, and thoughts we do have.

Please reply at your convenience and never give up!

 

 

UncleBuddy
Posts: 530
Joined: Aug 2013

" I'm now just a stay at home dad"

That is such an important job, don't minimize what you do!!! Be proud that you're doing a great job raising your children. Your kids are fortunate to have one parent who can stay at home.

I'm glad your cancer is gone! I hope you're able to find some relief from your pain.

Lin

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