Hip Pain

Mollymaude said:

Wis

I think you are about right energy wise for what you've been through. You finished treatment two months ago but after treatment you were hospitalized - from your posts you sounded like you actually felt the worst a couple weeks after treatment. It is just slow. And we want to feel better fast. I know it's frustrating, but look back at some of your old posts and realize you have made significant progress. 

As for alcohol I held off for quite awhile first because I was still on narcotics and then because it made my diarrhea worse. Probably 8-9 months after treatment I found I could drink a beer or margarita with no problems. 

As for the hip pain mine started really pretty soon after treatment like you. All the muscles that attach to your pelvis bones start shortening and scarring. For me the worst thing was sitting cross legged or putting my ankle on opposite knee. I went to PT and the stretches I was shown really helped- and I still do them. If I dig in the garden or weed my butt still gets really sore but I stretch and it's so much better. The sooner you start stretching the better. 

Stretching hurts!!  I've tried it a few times...not consistently though.  I used to be flexible, but everything has siezed up.  I guess I need to bite the bullet and just do it, because it's not getting better by doing nothing.

Yes, you are right...looking back, I have come a long way.  It just doesn't feel like it on a daily basis.  Every day is different though.  I never know how I'm going to feel from one day to the next, sometimes from morning to afternoon!  It's difficult to make plans to do anything because of this.  I was supposed to go blueberry picking with my neighbor and I blew her off three different times for three different reasons!  I feel bad about that, but I just couldn't force myself to go, because of guilt.  I'm lucky she's very understanding.

mp327 said:

Wis

As you know, any of us who had not gone through menopause by the time we had treatment were thrown into it at that time.  So, I think any and all women who have had pelvic radiation should be getting DEXA scans, regardless of age, after treatment is completed.  I am actually surprised that that recommendation isn't included in the NCCN guidelines as part of follow-up, but I guess they are just focused on the cancer.  Perhaps DEXA scans are mentioned--I haven't checked the latest revision.  The first DEXA will be a baseline to determine bone density and the need for any type of bisphosphonate medication, such as Forteo, Fosamax, Prolia, etc.  You mention having bone taken from your left hip for grafting, so I would be really wanting to know the condition of your bones after that and radiation.

As for the malabsorption, it's thought to be caused by the radiation.  It's actually pretty common in people who have had radiation to their abdomen or pelvic region.  The radiation damages the intestinal lining, which is where nutrients from food are absorbed.  It also prevents fat from being absorbed, which is why I can consume 2 baskets of chips at my favorite Mexican restaurant without typically gaining an ounce (however, that many chips makes for some messy times in the bathroom because the fat in them just goes right through me like a bullet train).  My medical oncologist referred me to a gastroenterologist for evaluation because my weight never bounced back after treatment.  He thought malabsorption was the culprit.  Other telltale signs can be unhealthy fingernails, hair loss, greasy and/or pale stools.

I have pasted in a couple of links for you that may have some information that will further answer your questions.

http://www.webmd.com/osteoporosis/features/bone-density-clue-to-your-future#1

http://www.healthline.com/health/malabsorption#overview1

As for alcohol, my dearly departed medical oncologist told me when I asked if alcohol was off limits that he didn't put me through all of that just to be miserable and gave me his blessing to have a margarita now and then.  As I said earlier, I would try it at home first and see how it goes.  If you used hard liquor, you might go on the light side with it until you see how your insides react.

Martha, thanks for those links.  They were informative and helped me understand both issues more clearly.  I have an appointment with my PCP next month too, so I can talk to her about scheduling a scan and possibly checking for malabsorption syndrome as well.  I haven't been able to hit 90 lbs. yet post tx no matter what I eat.

Sadly, my experiment with fruit smoothies didn't work out.  I started making them with fresh fruit, yogurt, almond milk and. protein powder, hoping to gain some nutrition and calories.  Fresh fruit doesn't agree with me right now...causes diarrhea.  So I've switched it up to include ice cream, one banana, protein powder and 1/2 & 1/2.  More calories, but I miss my fruit and it's summer now!!!  Maybe I should add some vodka to my next one!! Haha!!

Mollymaude,

Just rolling over in bed is a workout, because even just doing that hurts!  I do need to be more patient with myself.  I've been out of treatment now for longer than I was in it, but I always forget that the radiation is still doing it's thing and time is what I need.

Paying medical bills monthly has eaten up our budget, so I don't want to add more bills to the pile unless it's unavoidable.  Maybe YouTube will have some good gentle stretching exercises in addition to the yoga that Tracey suggested.

jajmom said:

January 2017 Diagnosis

Hi Wisteria

My hip pain started almost immediately after my treatment stopped. In the beginning I could not even lift my leg to put my foot through my underwear! I wondered as well if the pain pain was caused by my lack of exercise during treatment and recovery or from the treatment itself. I still am not certain. I also have lower back pain and overall body stiffness. I am 53 yaers old and I resemble a 99 year old when I get up from sitting or riding in a car. I have had some improvement with the hip pain in the last month but I am crediting that to me being more active as I regain some of my energy. I also credit the body aches and pains to the same! But, instead of exercise eventaully making me less apt to be stiff and sore (in better shape) it seems to cause it. Overnight rest usually alleviates the distress. I so miss my Zumba class, I just feel there is no way I could even try to go back. Between the stiffness, fatigue and bowel urgency I am just too intimidated to try 

I too need my afternoon nap. It is almost impossible to keep my eyes open after lunch, even after sleeping for 8 hours each night. It took a while after treatment ended to even feel as though I could handle an alchoholic drink. I have since then enjoyed both wine and beer. I would say that its gasto-intestinal effect was no worse than what I usually contend with. I do not, however, partake as frequently or as much as I would have in the past.

I am also a little frustrated at the slow recovery. After effects were not discussed at all by my radiologist and oncologist. I guess their thinking is just to get us throught the matter at hand. I did have a follow up CT scan and was scoped by my surgeon. I am happy to say that the tumor was gone and lymph nodes were no longer evident. I will be examined by my surgeon every 3 months for the next 2 years.

I wish you well in your recovery and prognosis. It is always nice to be able to share and sometimes commiserate with those who are in similar situations. I am deeply saddened as I was writing this... my dear friend just called to tell me that a mass she had removed from her rectum was found to be malignant. You almost expect and wish that by going through this ordeal yourself your friends and family might be spared, unfortunately I have just found this to be untrue....  I hate this damned disease.

 

jajmom,

Turns out that I was just going to write a post about this...and an update.  The pain in my hips, in my opinion is from the radiation.  No one can convince me otherwise.  I didn't have it, and now I do.  The back ache is a whole different story....to be continued in my next post.

At my last visit with my rad onc, my Dr. gave me a two page list of late stage side effects.  Hip pain was on the list.  I just didn't expect it so quickly after treatment ended.  I have appointments next month with both oncologists and I'll raise the issue then.  I don't know if it's coming from the bone or ligaments or tendons...I know the muscles are extremely tight and I'm no where near as flexible as I once was.  I have Fibromyalgia, so the regular joint and muscle aches and pains are something that I'm used to.  This is not that.

I've very sorry to hear about your friend.  This damned disease is the worst.  It's not something you would wish upon your worst enemy, and you want to hope that it spares your loved ones.  There's no predicting who it's going to touch, and no bargains you can make.  As for napping...I'm a firm believer that naps are beneficial to healing.  If you sleep 8 hours a night and still need a nap?  Guess what?  You must have needed it!  That's straight from my rad onc's mouth.

Best of luck to your healing.  I know about the stiffness, fatigue and bowel urgency,  I can totally relate.  The only place I go anymore is to the dr.  More about that in my next. post.

Hugs, ~Wis