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Has Anyone here had a Total Knee Replacement since Diagnosis of CML


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#1 Susan61

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Posted 20 October 2013 - 06:07 PM

Hi:  As many of you know I have had a lot of problems lately, but now I have not been able to even get around.  It looks like I am going to have to need TNR on my left knee.  I am in so much pain, that I cannot walk.  Cannot put any pressure on my left leg.  Planning on getting some x-rays this week somehow in between taking Gary for his Chemo.

    I was just wondering if anybody here has had to get TNR,or considering  doing it very soon.  I am really scared with everything else I have been through over the past few years.  Guess I am looking for some postive feed back.

Susan



#2 Pin

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Posted 20 October 2013 - 08:10 PM

Oh Susan, I'm sorry to hear that you are in so much pain especially given what you are going through with Gary.

I imagine it might be useful for someone who has had any sort of surgery after diagnosis to share their story with you.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 jjg

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Posted 21 October 2013 - 08:31 PM

Hi Susan,

Not me, but there was a guy at the gym, in his 70s who had one. His main problem was that he couldn't understand why he'd waited so long to get it done - it was painful at first but not so much compared to the pain he'd been in before the operation and over time it was a big success. He did do a lot of rehab and was at the gym most days.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#4 hannibellemo

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Posted 22 October 2013 - 06:28 AM

Hi, Susan,

Boy, if it's not one thing it's another! My DH had a TKR replacement 3.5 years ago. He hasn't looked back! The recovery period was relatively short for him and I was a ruthless physical therapist, but he left the hospital with 100% extension and 80% flexation. Don't neglect the extension - it's just as important as being able to bend your knee.

They had just developed this program at his hospital  called "Joint Camp". Spouse's or another person who could help with recovery at home were encouraged to attend. Everyone who had had a hip or knee replacement that week did all of their therapy together and it was very supportive. Most of the people who had the joint replacements were a lot older than Steve - I was amazed.

Be very thorough checking out the hospital and surgeon, especially when it comes to outcomes and infections - but I would go for it! My dad had RA and he lived the last 25 years of his life in pain everyday, I don't wish that on anyone. Come to think of it - he fell and broke his hip, ironically he had no RA in his hips, broke the ball right off. Even he did great during recovery!

I think you'll be glad you did it!

Good luck!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 simone4

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Posted 22 October 2013 - 10:04 AM

Hi Susan,

  I have been in France most of the summer and when I came home I read most of the posts

and saw that Gary has bladder cancer, as well as your not being able to walk.

Both of my parents had knee replacement in their 70's and my aunt who has RA

had it when she was 85 years old.  All three did very well. But the therapy afterwards

is so important.  You will do fine. Are you using a "walker" (I think this is the word)

to get around.  That will help until you can have surgery.  You have such a lovely

attitude about life...that will go a long way toward your healing.

And Pat, your Dad fell and "broke the ball right off"?  I'm going to go take

an Advil just from thinking about that.

Take care.

Simone



#6 susanlathers

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Posted 22 October 2013 - 12:20 PM

Dear Susan

Be encouraged

No need to live with that kind of pain.  I had 2 knee replacements 5 yrs apart and had breast cancer and CML with both.  I would do it again in a second.  But, as those before me have said the physical therapy is sooo important and the more vigorous and frequent the better your new knees will be. Painful, yes, but the pay off is worth it.  And as Pat said, extension is more important than flexing.  If you don't get good extension you will walk with a bent knee and with a limp. Icing will become your best friend so get some gel packs in the freezer.  The only thing I have trouble with is kneeling and squatting otherwise they are totally normal. I was back at work in 2 months but full recovery took a little over 6 mo.

  My blessings to out to you

Susan



#7 hannibellemo

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Posted 22 October 2013 - 05:54 PM

I know, Simone, it makes my toes curl just thinking about it. He fell over a fireplace hearth at home. It was very late and he didn't turn on the light on his way to the kitchen. My mom was so upset she called their good friends for help (instead of an ambulance); he was a veterinarian! 


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 Antilogical

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Posted 22 October 2013 - 10:28 PM

Hi, Susan.  I was diagnosed with CML in 2/2012, as I was preparing for a TKR of my right knee due to severe arthritis.  My TKR was delayed for 1 year while I was treated with Gleevec.  I reached PCR-U, then my onc reduced my dose of Gleevec from 400 mg to 200 mg, as I was neutropenic, and my WBC, hgb & platelets were low - not good when you're having surgery.  After 3 months on the lower dosage, the labs came up a little and he gave the green light to get the TKR.  I had the surgery on June 10 of this year.

It hasn't been easy.  I had to have a transfusion after the surgery, as my hgb dropped a lot.  My incision opened up at home, and I had to put the physical therapy on hold for 10 days to avoid more trouble, then the surgeon contacted my onc in order to change the blood thinners.

I've been doing the exercises, but I'm still not at the point where I can easily climb stairs, I have trouble when I first stand up, and my hip hurts like hell, but I am no longer using a cane.  They say it's more difficult for me because of the extra time I waited to have the surgery.  By the time I had it, I had a permanent bend in my knee and a severe limp.

My dose of Gleevec is back up to 300 mg.  I'm no longer PCR-U, but my onc is still pleased with my "deep response".  He wants me to stay at 300mg while I continue to heal, and he suggested that I get my left knee fixed next spring.  Ugh. I'm not ready to think about another surgery, but he wants me to get it over with and then return to 400 mg.

BTW - my surgeon is pleased with how the knee looks and my progress so far.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#9 Susan61

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Posted 23 October 2013 - 06:34 PM

HI: I just want to Thank Everyone for their responses.  I just went for a x-ray today, and will probably need a MRI to get a more detailed idea of what is going on.  I know how important the Physical Therapy is.  Gary had a TNR 2 years ago, and he is doing great.  He did therapy at home, and then 3 days a week for 3 months at the Rehab Center.  He tells everyone that its not the surgery, but the therapy to build that knee back up.

    I am not even positive yet that they will say I need the TNR.  I might just need Arthroscopic Surgery right now.

   Gary started his Chemo, and is doing great with it, but he is also a very positive person no matter what he has to go through.  I wish I could be more like that.

   I will know more by the end of the week as far as what is actually wrong.  Again Thanks for all the feedback.

Susan



#10 Susan61

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Posted 25 October 2013 - 04:29 PM

HI:  Seems like you had a rough go of it with your surgery, and the CML.  Sounds like your getting back on track.  I know the rehab is the most important part to get that knee to feel like your own again. What caused your incision to open up on you?

I just got a call regarding my x-ray, and it showed severe arthritis with fluid on the knee.  I guess once I get in to see the ORthopedic Doctor that he will want a MRI done.

Could not even walk today to go do my food shopping.  I guess I should put some ice on it, and maybe alternate with ice and heat someone told me.  I really do not know what to do.  Feeling really down with everything.



#11 Antilogical

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Posted 25 October 2013 - 08:55 PM

The surgeon is speculating that my bleed was a hematoma that found the easy way out - through the incision that hadn't healed yet due to borderline platelets.  The bleeding wouldn't stop while I was on the blood thinner requested by my onc (Xarelto), but he would not agree to switch me until I had been on it for 10 days.  At that point, they switched me to aspirin and the bleeding was almost stopped the next day.

I've made a lot of progress in the past week, and sometimes the leg feels pretty darned good.  The knee always feels good - it's the muscles and ligaments that  scream at me.  Some days, my other knee bothers me more than my surgical knee!

My latest lab tests came back, and things are headed back to where I was before the surgery and the reduced dose of Gleevec:

  • WBC, RBC, HGB & ANC are below normal.
  • PCR is 0.002, down from 0.004.

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#12 Susan61

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Posted 25 October 2013 - 11:25 PM

I got my test results back, and it was Severe Arthritis of the left knee with fluid on the knee.  I have to get in to see the Orthopedic Doctor, and go from there.  Maybe I can get the fluid drained, and maybe just get the Arthroscopic Surgery for now to hold me for awhile.   I have so much going on, and winter is right around the corner.  I guess I have to find out how bad it is.

The biggest response I get from everyone is that they wonder why they waited with the relief they got after surgery.

Thanks Again

Susan



#13 Tedsey

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Posted 26 October 2013 - 09:41 PM

Take care Susan.  Wish I could help you in some way.  You are in my thoughts.  I am not much of a prayer, but I pray now that with all the good you have put out into the universe, it comes back 10 fold to you. 

Tedsey






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