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I'm just not the same...Had mri...need a new hip!

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Hi all - I am 3 1/2 years out.I am basically feeling "ok" except for pelvic stiffness and pain which i mentioned before.My other main complaint is not having strength.i just dont have the physical stamina i used to have.I am learning golf and after three holes..had to pack it in.There are times when im standing with people and have to find a seat because i can't stand too long..I know i have to work on my inner core...more exercise too...I have no strength in my legs either.If i bend down to pick something up,i must hold on to something and "pull " myself up.Any body there going through this???? thanks ..alyse

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I can certainly relate to the pelvic stiffness. As for strength, it took me awhile to get back to the level I was at before cancer snuck up on me. I weight train 3 days per week and it really helps. You might try an exercise program using exercise tubing, which provide different amounts of resistence. It's easy, it's inexpensive and it works. One or two sessions with a trainer would probably provide you with an exercise program tailored to your needs and fitness level. Don't get discouraged. It takes work, but you can do it!

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Thanks for your advice...i know exercise can't be avoided...:-)

lil lady
Posts: 36
Joined: May 2009

Hi..It will be 3 yrs.post treatment for me, and I am having the same problems I have difficulty walking a block. Most of my pain is in my right hip and weakness in my legs.It is very frustating

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Same here...I can walk about 250 steps (I measured the distance with a pedometer) then I cramp all up, really bad, and have to sit for a while. (I'm 3 1/2 years out.) I've had x-rays, bone density, MRI of the back (I have a small bulge between two discs, but it's not enough to cause these symptoms), and I can't remember what other tests. I don't exercise (and should). Never ever had a problem walking until about a year out of treatment.

I also have a tiny bit of arthritis in the back and bursitis in both hips. The arthritis and bursitis were with me prior to treatment - but I never had any issue with walking. I think Martha's right - exercise is key. Keep moving, keep stretching. I've tried in the past - it didn't help with the walking but it did help tremendously with flexibility. Trying deep tissue massage this week. I'm thinking it might be dense tissue or something. I'm hoping that the deep tissue massage will loosen those tissues (and I plan on following through with any exercises she gives me).

Another thing is that I sit a lot. I have a desk job and am on the computer a lot when I get home. I don't think this helps very much, in fact I think it harms the situation. Don't really know how to get around it though. I get up at work often enough and try not to stay at the computer too long at home, but I really think I gotta get up off my butt a lot more.

mxperry220
Posts: 360
Joined: Mar 2011

I have posted this once before but I was on cholesterol medication and discussed the stiffness and tiredness issue with my primary care physician. He suggested me to come off my cholesterol medication. Within a week of discontinuing the cholesterol medication 80% of the symptoms disappeared. If I sit for too long I still have some stiffness. I know he will want to put me on a different cholesterol medication once I see him this summer. If you are taking cholesterol medication I do not suggest discontinuing without your doctor's approval.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

If you don't mind sharing, mxperry, what cholesterol med(s) are you on? I take Lipitor and Niaspan (prescription Niacin) and wonder if I would not feel so stiff if I wasn't taking these. My doctor insists that I take them so I do, but perhaps I need to discuss different meds with her. Thanks for any info you can provide.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

My doctor took me off Lipitor and then Crestor because of pain and stiffness. It worked, pain and stiffness abated. This was before the cancer was found. Now after tx and NO cholesterol meds both are back. Arrrggggg. Lorikat

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

Thanks for the info. It's hard for me to tell if my pain and stiffness is from the treatment or the meds--or both. I wish I could go off the meds, at least for a little while to see if that helps. I hope you're doing well--thanks again.

mxperry220
Posts: 360
Joined: Mar 2011

I was taking Lipitor. My doctor took me off Lipitor. I am not taking anything now. I have been off Lipitor since July 2011. I have not had the tiredness or stiffness since discontinuing the Lipitor. I feel certain my primary care physician will want me to start taking some form of cholesterol medican when I have my physical in July.
Mike

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I appreciate your response to my question. I am taking Lipitor too--40 mg. per day. I really feel I am having some effects from it, but like you, my primary care doctor is insisting that I take a statin. I am due to see her soon and am going to have a discussion with her about this. I really would like to discontinue taking it. Thanks again!

mxperry220
Posts: 360
Joined: Mar 2011

You might want to ask your doctor if you can quit taking your meds for one month and see if there is any relief. If so then your doctor might could put you on a different statin. I was taking one Lipitor 40 mg. daily.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I am also taking one 40 mg. Lipitor daily. I am due to see my internist soon and will be having a discussion with her about this. Thanks!

Angela_K
Posts: 374
Joined: Jan 2011

I was finding myself exhausted some days as well. A regular Pilates practice and subscribing to a Paleo diet has helped me greatly . . .like night and day, in fact. The late Joesph Pilates summed it all up when he said:

"A body freed from nervous tension and over-fatigue is the ideal shelter provided by nature for housing a well-balanced mind that is always fully capable of successfully meeting all of the complex problems of modern living."

Pilates focuses on strengthening your core or 'powerhouse' - abs, lower back and butt through control, breath, flow, precision, stability, and centering. It's gentle, limited to your natural range of motion, and just feels good. (Especially with the stiffness I have now in my hips.) I am now the Pilates instructor at one of our local hospitals' health club and I would be delighted to answer any questions you may have regarding this method of body conditioning. You will find this 20 minute video all you need to get started.
http://www.youtube.com/watch?v=YW2eRv4kCag&NR=1&feature=endscreen
but if this sounds like something you would be interested in pursuing, I encourage you to find a reputable instructor in your area to get the most out of it.

Dropping grains, sugar and all processed food made a huge impact on my energy level. It is a committed lifestyle change, but for me, it has been worth it. I had to totally approach food differently from what had been hammered into my brain for years. The science is there to support the Paleo diet. I just had a check-up and the doctors said my bloodwork was "beautiful."

I've started a blog, awakeontheconcho.blogspot.com, that you just may find helpful, too.

And on an end note ~ I still don't have all of the energy (on a consistent basis) that I used to have. But I'm much, much closer now that I practice Pilates daily and have changed my eating.

Hope some of this helps.

Angela

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I am so glad to hear you are still doing well. It is clear I have to change my diet. I have way too much acid and asthma reflus and it will be the end of me if I don't find ways to change. I made a lasagne the other night and could not believe I was doing it. I can't eat lasagne. I didn't even do well eating it before I had treatment! I don't know what I was thinking. I have an 82 year old friend who jumps around like a child - even did the limbo at her 80th birthday party. She is on the raw diet and only has one warm meal a week. No dairy, no eggs - strictly vegan and raw. She is the power of example. Thanks for your post.n You are a terrific resource.
Fondly
Sandy

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

i will be 3 years post tx and do not have enough energy. i do try to stretch first thing in am and it helps with stiffness. but still am stiff and pain . my problem is that i still cannot sit for long periods of time due to tissue pain so i stand most all day. you are not alone. sephie

melissatrenary
Posts: 1
Joined: Mar 2012

Please just check it out!! Organic, specific, fresh food & Juicing. Also, check out the NIACIN therapy. Hope you feel better!

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Thanks for your post. The name rang a bell because my 82 year old "youngster" friend says his name all the time. She is very strict about her intake and it shows.
Fondly,
Sandy

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Thanks for your post. The name rang a bell because my 82 year old "youngster" friend says his name all the time. She is very strict about her intake and it shows.
Fondly,
Sandy

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Thanks for your post. The name rang a bell because my 82 year old "youngster" friend says his name all the time. She is very strict about her intake and it shows.
Fondly,
Sandy

Angela_K
Posts: 374
Joined: Jan 2011

I stuck to a modified version of this Gerson diet/juicing beginning right after diagnosis and throughout treatment. I am convinced it kept my body full of good nutrients that only enhanced/supported the chemo and radiation. I did not subscribe to my doctors' 'you can eat anything' advice. I felt good during treatment and recovered very, very quickly. Yes, I attribute at least some of that to excellent nutrition. Drop the sugar, drop the processed foods and rethink the food pyramid. Lean meat and huge variety of vegetables are my staples. Pure grains and natural sweeteners like honey or pure maple syrup are eaten in extreme moderation. And I still juice daily (kale, carrot, fresh ginger, parsley, beet greens, green apple, asparagus.) I encourage anyone to try it for a month and see how you feel and check your blood work at the end of 4 or 5 weeks.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Alyse. I am 2 years out and have the same problems as you. I recently asked my primary care doc for some advise. He said to do the core training, by lifting my arms up and to the right while stepping off with the left foot, then reversing to the other side and stepping off with the right foot. Do 50 reps, 3 times a day. Since changing over to the VA cancer clinic in my area, I have a new group of docs. My radiation doc suggested that after taking a hot shower to warm up the leg muscles, to rotate my torso like doing the hula or using a hula hoop, 5 minutes a day. I tried it and it helps. The thing with me is that because I lost that stamina, I either keep falling, or wobbling into things. I can walk about 20 steps at a faster pace, then I start walking sideways. The problem is in the balance. The chemo and rad, somewhat "damaged' the hip and leg muscles and nerves. My feet can't send the message to my brain that I am unstable. Walking helps. Water exercises help. Resistance stretches help, but because of the stiffness in my hips, I can't bend over to put the bands around my lower legs without toppling over. In time, with continued training, I hope to get back to where I was. I, too have to pull myself up after bending down to pick things up.
Also, I used to be on Zocor, but once I started the tx's, my doc said that I needed to keep up my nutrition, so to eat whatever I could get in my system, and to never mind the "fats". They took me off the Zocor then, (I guess due to what that stuff can do to bones and can stiffen joints), and I have't gone back on it.
My husband was just prescribed meds for prevention of gout. His onc told him that chemo can increase the risk of gout. Has anyone else been prescribed this???

I hope the best for you Alyse. Take care. God bless.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

My physical therapist gave me a couple of simple exercises to build strength in the upper legs and butt. She said I have 'no butt'. I guess our butts are supposed to have muscles. Who knew? Not me, haha!

Like Captain, she said core strength is needed. Next time I see her (Thursday) she'll have a more complete exercise routine for me.

Stand with your back against a wall. Put your feet out in front of you a bit and slightly apart. Slide your back down the wall, just a little, like a partial crouch. Hold for 10 seconds then slide back up the wall. Repeat 10 times. (I'm not at 10 yet, but am going to keep going till I get there and beyond.)

Another one - lie down on your back on the floor with your knees bent, feet flat on the floor and slightly apart. Press the small of your back into the floor. Clutch your butt muscles together and raise your butt up. Hold for 10-20 seconds. Repeat 10 times. (These I can do easy - and they feel good for my back.)

She also did some deep muscle massage in the groin area. It was only the first visit, but I think it helped.

ps, The other thing I like to do is dancing. Find a really great song and just dance. Don't have to do much - it's good exercise and makes you feel really good. Don't do too much though. Stop when you feel the need to. I happen to love the good old 70's music (doo, doo, doo, lookin' out my back door).

duckyann
Posts: 162
Joined: Jun 2009

I am also feeling what the rest of you do and I am almost 3 years out. I sometimes even have more pain in my left side of my back, hip and through my groin area than I did before. This often scares me and I think why does it hurt more than it use too. But after my last appointment with my colorectal doctor in December he explained that the scar tissue actually continues to change and can thicken for a while. He called it "Fibrosis". I am trying to believe that is what is going on. I also have a desk job and I know I need to exercise more than I do. I still get quite tired after work and coming home to cook and clean that I really don't feel like doing anything else. I know it isn't a good excuse.

Rose, I love to dance too and some times when I am at home I just turn that music on and dance around my house like a nut.....hahaha but you are right it does make you feel good!

Captain11
Posts: 88
Joined: Apr 2011

Thanks for the advice, Rose... I love to dance, also, but my clutziness kicks in a lot faster than the dance steps. My doc also said something about the radiation proctitis, which is why the butt hurts more now than it did before all this happened. Actually, I had no pain or symptoms of any kind. And I eat more fruit and veggies than most people... I am a walking anti-oxidant... yet, i still got the Big "C". Thanks again, and God Bless.

Phoebesnow
Posts: 447
Joined: Apr 2011

I have been diagnosed with ataxia, maybe cancer mediated. I am currently walking with a cane. I am still in the process of being diagnosed with the specific type. 8 weeks ago, I was surfing and walking my dogs. I now have a permanent disabled placard. Follow your symtoms until u have an answer. To all of you going thru tx or willbe god bless you and I hope it is easy on you.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I hate to sound like a commercial. I am suffering with these types of symptoms too. I do Tai Chi and Chi Gong which really helps but also take Lyrica three times a day. I know when I am late or missed a dose. It was prescribed to me before I was diagnosed for pain in my legs mostly that now I believe was caused by the tumor and now by the scar tissue. This is the first week I got on my exercise bike. I stayed on for 8 minutes. My right leg pulls to the right and I have to throw my leg forward when I get fatigued which is often. I walk our dog a mile a day most days. I Fell flat on my face last week. It is interesting to be on this site again. What is described here is exactly what has been troubling me . . . the fear that I am getting worse and the cancer is back. It seems the scar tissue is changing. I have had some sharp jagged pains in my anus from time to time and can really feel where the tumor was almost like when I first was diagnosed and doctors were pushing on it during examination. It really helps to hear you bring this up. Thanks.

Phoebesnow
Posts: 447
Joined: Apr 2011

Gosh it was good to hear from u too. So sorry u had such a bad fall. I am taking motrin 800 for pain. This is quite a journey we r on. I am so glad this thread got started. I felt so alone before with my aches and pains.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi Sandy - please try not to worry about the leg kicking out. I had the same thing happen - for several months. It's gone away now. Don't worry - it's only the residue of the treatment - why, I don't know (but it went away). Keep doing what you're doing. It'll go away.

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Thank you all for your 'war stories"It helps to know i am not alone.I think we have to just keep moving...stretching and exercise must be a part of our normal routine.I just turned 59 and am worried how i will be in 5 years..or 10 years.i live in southern florida and see elderly people with walkers and wheel chairs..i often wonder..will that be me???I hope not...Thanks all...hugs..alyse

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I believe that's the best thing any of us can do. I have aches and pains that I never had previously, but crazy or not, I am doing my very first marathon at age 58 on April 21st.! I know I will hurt when it's over, but that's what Advil is for! Keep up with the stretching and toning--it helps tremendously!

tmpage1273's picture
tmpage1273
Posts: 93
Joined: Feb 2012

If I don't talk to you again, congratulations on the marathon!!! I think that's awesome!

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I very much appreciate your good wishes!

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

It is wonderful to hear you are working out in preparation for a marathon. You certainly are an example that anything is possible. I am glad Ibuprofen helps you.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

Thank you so much for the kind words! As a smart person once said, "You'll never know how far you can go until you go too far!" I guess I'm about to find out.

tmpage1273's picture
tmpage1273
Posts: 93
Joined: Feb 2012

And let us know how you do.
PS. I accidentally hit report as offensive instead of reply I think. SO SORRY!

AZANNIE
Posts: 383
Joined: Mar 2011

Best wishes on your upcoming marathon!!! You go girl!!

Ann

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I'm going to give it my best shot!

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Wohoo martha!!! You are my idol..Good luck at the marathon...hugs ..alyse

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I am going to do my best to complete this marathon, not just for me, but everyone here and elsewhere who has fought hard to beat this disease! Thanks for the good wishes!

Angela_K
Posts: 374
Joined: Jan 2011

GOOD for you, Martha! I am so excited for you. Where is this marathon? I wish I could be there to cheer you on! I am going to be in my first Sporting Clay Shoot on that very day . . . so it's a great day for 'firsts!'

I was out shooting at our local claybird association earlier this week, when my butt started hurting/throbbing so badly I had to quit. So, I guess I'll forever have weird ass moments. :) I just hope that they're far and few between.

Love to all,

Angela

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I am very excited about the marathon. It is on Saturday, April 21st. in Carmel, Indiana, just outside of Indianapolis. That's pretty exciting that you are clay shooting! My husband and I used to go to the Schutzenfest in Altamont, Illinois, which is a big shooting event, although I think most people go to drink beer (as we did--lol!). If you ever decide to compete at Schutzenfest, let me know, I'll try to be there! Good luck and here's to no "weird ass moments" for either of us on the 21st!

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Good luck at the marathon!!!

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I appreciate the good wishes! I'll let everyone here know how it goes.

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

i feel the same. i just try so hard to be grateful for what ever i can do each day but i get so fed up with all the stuff i have to do to get going. here i am again, complaining and really i am sooooooo grateful for how far i have come after the tx. despite the bad stuff. i will be 59 in july. sephie

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Sometimes I have to move as slowly as my mother who is 85 to get around.I am 62 and look forward to feeling better next year than maybe this one and last. Not everyone can say that. We were diagnosed and treated successfully. That's a really good thing. But it sucks to hurt when I move so I get totally what you are saying. Happy Easter and/or Passover.

Fondly,

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

I made an appointment with hip specialist April 27th.The groin pain is not getting better..I will let you all know...Hugs alyse

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I hope you find out what is causing your pain on the 27th. and that it's something that can be relieved with something that's not invasive. Please let us know how it goes.

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Hi all...Well i got MRI results and it was'nt very good.I have a hip fracture .The doctor has recommended i get a full hip replacement on my right side.My hip is collapsing.This was caused from the 31 rounds of radiation 3 1/2 yrs ago. Radiation is the gift that keeps on giving.......The following is from JAMA

Results Women who underwent radiation therapy were more likely to have a pelvic fracture than women who did not undergo radiation therapy (cumulative 5-year fracture rate, 14.0% vs 7.5% in women with anal cancer, 8.2% vs 5.9% in women with cervical cancer, and 11.2% vs 8.7% in women with rectal cancer); the difference was statistically significant and most fractures (90%) were hip fractures. We controlled for potential confounders including age, race, cancer stage, and geographic location. The impact of irradiation varied by cancer site: treatment for anal cancer was associated with a higher risk of pelvic fractures.

I am going back to the dr on wednesday for consult.I couldn't absorb what he was saying today on the phone.Wish me luck...hugs alyse

torrance
Posts: 118
Joined: Jan 2012

Alyse,

So sorry to hear the news and thanks for educating all of us with those statistics. Guess something to file away in the back of our minds.

I will keep you in my thoughts for your return visit as you seek clarity from your doctor.

Please keep us posted,
Joanne

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I am so, so sorry to hear this! No wonder you have been in pain! Thank you for posting the statistics--it's startling, to say the least. I suspect you, like me, have a small frame, which probably makes us even more at risk for such fractures. Since I'm a runner, I always worry about a hip fracture. Hopefully, the weight bearing exercise is helping to strengthen my bones, not weaken them. Post treatment I have fallen twice, once off a chair and once off a ladder, both times landing on a hip, but came through both incidents without a problem. I wish you had the same luck I've had. I will certainly be thinking of you and I hope you'll let us know what the plan is after you see the doctor on Wednesday. I will keep you in my prayers.

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