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Radiation side effects & arthritis

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Hello! It's been a while since i last posted! I was diagnosed stage IIIB rectal cancer in August of 07 when i was 38 years old. I received six weeks of 5FU pump along with seven weeks of radiation. Had resection surgery in January 08 (clear margins, with four out of fourteen lymph nodes involved), and began FOLFOX6 in April.

Before surgery i started having pain in my back and butt muscles. This has progressively increased until now i can barely walk. My oncologist didn't seem concerned about this, and the nurse actually suggested i try to find a chiropractor. I didn't think that was a good idea because the pain was acute, and apparently here to stay. I made an appointment with my primary oncologist, and she ordered x-rays. Now i find out i have a bad calcium defeciency, and mild arthritis in the area where radiation was given. I'm getting a bone scan in two weeks to see if i have osteopenia.

The radiation treatments have caused me more problems than any of the chemos or surgery together. I also have radiation cystitis. What i would like to know is if this has happened to anyone else, and how did you treat it? Especially the arthritis. I am on calcium supplements, and i do mild yoga in bed, but the pain is almost unbearable. Is there anyway to relieve the pain without so many painkillers? My doc prescribed ibuprofen which helps, but she doesn't want me to take it very much. :( I don't think i'll see her again until after the bone scan. Any help would be wonderful!

Thank you!
Krista

epohdnayoj
Posts: 6
Joined: Sep 2008

Hi Krista, I am new to this site and came across your post whilst browsing through the discussion board tonight. Your post is of particular interest to me because I have had a similar experience. I am older than you, 57 years, but I was diagnosed with stage 111B rectal cancer in August 2005, received pre-operative short course/high dose radiation (five treatments over five days) and chemotherapy following surgery (30 once-weekly treatments). I experienced severe pain from the second day of radiation, in the buttock muscles, and had difficulty walking. My surgery took place within one week of the radiation being completed so that pain was quickly masked by the post-surgery pain. As I recovered from the surgery I complained of arthritic-type pain for over 18 months, especially in the hip and pelvic area. My oncologist prescribed an anti-arthritic medication (the name escapes me now) that I didn't find very helpful - aspirin used sparingly was better for me. By July 2007 the pain had worsened and I had very severe lower back/buttock pain on standing and I could barely walk. I was forced to have about two months bed rest. I had numerous tests and scans - CT, x-ray, PET, bone scan, MRI. The CT report was clear for any metastatic disease but unfortunately the technicians did not look for any other bone abnormality. The PET scan showed uptake in the sacrum and there was a preliminary diagnosis of sacroiliitis. I was referred to a rheumatologist who ordered an MRI scan - this confirmed his suspicion that the problem was not sacroiliitis but rather sacral insufficiency fractures caused by the radiation. These are spontaneous fractures (in my case the only incident that may have caused them was lifting my 15-month old grandson). I have been diagnosed with osteoporosis, a disease that may have occurred at my age anyway, but my rheumatologist feels sure the condition has been exacerbated, if not caused, by the radiation and chemotherapy treatments. I have not commenced the osteoporosis treatment yet other than once-monthly prescribed Vitamin D tablets, weight-bearing exercise daily and judicious dietary intake of calcium daily (since the side-effects of my bowel surgery mean that I cannot properly absorb calcium in tablet form). The pain has eased considerably over the last year but is variable and worsens if I am not careful with movement - bending, twisting and lifting. I still have a constant sore spot in my buttock muscles - for this I have found physiotherapy and massage very helpful. Now the fractures have healed I try to take long brisk walks, daily if possible.

I hope this is of some help.

Regards, epoh.

Lilbit1
Posts: 3
Joined: Jan 2008

I had colon-rectal cancer, resection done in 2001, in 04 I started having buttock and leg pain, I can not walk , the pain starts and I have to stop. My vascular Dr. was sure is was poor circulation from smoking. I later was told that I have nerve damage from the radiation treatment and there is nothing that can be done, also I have all sorts of other problems in the pelvic area. I felt much better after my surgery than I do today. I am weak and tired all the time from fighting the pain, depressed, and I want my life back.
Would love to hear from you.

Lilbit

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

It sounds like you may have the same problem as me. I would have them check you for osteoporosis and bone insufficiency. I never heard anyone say anything about nerve damage, even though it sure feels that way sometimes!

Let me know what they find!
Many hugs,
Krista

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Hi Epoh! Looks like we have the same exact problem! I, too, found out that my problems were insufficiency fractures from the radiation. I have a fractured sacrum, severe osteoporosis (-3.9), and all around soft bones, particularly in my lower back and left hip. I was angry at first that my radiation oncologist didn't put me on fossamax while getting the radiation, but now i'm hearing that this is not a common side effect.

My pain has also subisided since starting the calcium, and fossamax, but i'm concerned because this is not really a reversible ailment. They have suggested i take these shots that help grow bone, but it causes bone cancer in animal experiments, and it's only been on the market for four years. I'm seeing an osteoporosis expert next week who claims the shots are safe if used for short periods of time (up to two years), but i don't want to take the risk, so i will try to do what you're doing, and build my own bone through exercise and diet.

I know things can be much worse; we feared my problems were metastasis before the MRI results, so my love of rollercoasters must be replaced with a new love...maybe i'll go back to school? lol!

Thank you so much for letting me know i'm not the only person who has been affected in this way. Now i feel like i can go back to my doctors and say, 'see, it's not THAT rare...put women going through radiation on fossamax!'

Many hugs,
Krista

pamness
Posts: 511
Joined: Nov 2007

Was it a major cancer center?

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

I get all of my care through UCSD. We have the Moores Cancer Center which is supposedly the best in the nation. It sure is a beautiful facility.

Madre's picture
Madre
Posts: 124
Joined: Apr 2008

Kristasplace
I too was dx with stage 3b in April "08. I had surgery and chemo but no radiation. I had 3 out of 42 lymph nodes positive. Can I be nosey and ask why you had to have radiation? I see alot of people have radiation but that has never been part of my treatment. My tumor was in the transverse colon 1 1/2 inches long. They took 14 inches and resected everthing - no bags. I just wonder why same kind of cancer with different treatment. Thank you.
Madre

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Hi Madre! That's not a nosey question! lol! It's actually a very good question!

They don't normally give radiation to colon cancer sufferers because the colon moves around too much, and they have to tattoo you to make sure they're zapping the right area every time. That's hard to do with something that is constantly moving. That's the only real difference between colon cancer, and rectal cancer. I guess the rectum doesn't move around so much. Mine was right at the junction of the colon and where the rectum begins, so they thought it would be okay to do the radiation. Plus, my tumor was so huge, they had to shrink it in order to save my rectum. The radiation coupled with the six weeks of 5FU pretty much anhilated the tumor, as well as shrank it enough to save me some rectum, and avoid a permanant ostomy.

Unfortunately, the radiation is very damaging. That's what's caused me more problems than anything else.

Enjoy the up and coming week!
Many hugs,
Krista

kmygil's picture
kmygil
Posts: 841
Joined: Feb 2007

Hi Krista,

I think I told you before that I have "undiagnosable" pain in my lower legs for which the only thing is painkillers. However, I do also have hip and buttock pain, but not as severe as yours sounds. I did not have radiation, but tests showed severe osteopenia bordering on osteoporosis. I am taking calcium & Vit. D like crazy, because the biophosphonates like Boniva etc cause full-body excrutiating pain. It will probably to from super severe to severe to bad to intermittently bad to nagging and back again. I try not to take the painkillers--take too many med as it is, but I am not shy about taking them when necessary. The best anyone can come up with is that it is probably an artifact from chemo. Try to exercise and do small weights. Drink water! I hope the bad pain is temporary.

Hugs,
Kirsten

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Kirsten, have you seen an orthopedist? My other doctors all thought i had mild arthritis and osteopenia until i requested to see an orthopedist. He had a special computer program that measured bone density and the other things that could properly read my x-rays.

That doctor was the only one who could tell how serious my condition really was. Much more severe than osteopenia. It's possible that you're getting insufficiency fractures from your thinning bones. That is very painful. They kept telling me that osteoporosis is not painful, but i was having severe pain. Sure enough...fractures.

Good luck, and let us know if they find what it is!

Many hugs,
Krista

epohdnayoj
Posts: 6
Joined: Sep 2008

Hi to Lilbit & Krista. Lilbit, I understand how depressing it must be for you to have constant pain and difficulty walking. I agree with Krista that you should perhaps be checked for osteoporosis and insufficiency fractures, if tests haven't been done already. From what I have learned, insufficiency fractures can appear anywhere from a few months to many years after irradiation. The pain you describe sounds similar to the pain I suffered with last year and it was only after about two months of bed rest that it eased.

Krista, I want to clarify my choice to date to defer Fosamax or any other osteoporosis treatment. Firstly, though my doctors have urged me to start treatment, they have also assured me that I do have some time to consider what treatment is best for me. I'm probably taking longer to make up my mind than they envisaged. However, they did assure me that osteoporosis treatments do not take effect immediately but are designed to impact upon the bone slowly, one or two years before any noticeable improvements, so any delay in commencing treatment is not going to make much difference overall. I haven't totally rejected treatment, it's just that I cannot bring myself to commence any treatment yet when I still have so many questions to be answered about the potential side-effects of the drugs. I am scared to start treatment and at the same time scared not to start it. My doctors want me to commence Fosamax (I have a choice of the once-weekly tablet form, or either once every six months or once-yearly infusion form) or another drug known here in Australia as Protos. Others I know who have taken Fosamax have been forced to quit it because they became so ill. I don't want to risk that as I'm feeling so well now. Then there is osteonecrosis of the jaw, which though rare, is still a possible side-effect. l don't think I'm being pessimistic when I express my fear of that side-effect - I haven't had much luck so far as far as side-effects from treatments are concerned! As for the latter drug, Protos, it is relatively new and advice to me from our drug board is that there have not been any studies to determine the possible long term side-effects. That is worrying! So... I'm stalling. Meanwhile though, as I have previously posted, I am trying to be very conscious of my dietary intake and exercise regimen to ensure I do whatever I can do to keep my bones from weakening even more. Krista, this is a very very worrying position to be in, isn't it? The constant cloud hanging over our heads re the rectal cancer and now on top of that another disease, osteoporosis, that is irreversible and for which we must make decisions re treatments, none of which are without risks. Please keep us all informed. I will be one in particular keeping a watch out for any news from you (and any others who have experienced similar problems).

I wish you the best. Kind regards, epoh.

Joy1216's picture
Joy1216
Posts: 282
Joined: Mar 2006

What about Actonel? That's another weekly osteoporosis drug. I've been taking it along with Citracal and Vitamin D. I haven't had any side effects and having been taking it for about a year and a half.
Joy

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Hi Joy, i haven't yet had any side effects to the fosamax either. It seems for me, i don't get the common side effects from drugs, just the rare ones. So whatever the fosamax will do to me is yet to be determined. I'm thinking about dropping it as soon as i can find some homeopathic treatment known to work.

If Epoh gets back to me and tells me fosamax causes bone necrosis, i'll be ending the fosamax sooner than expected!

I have not heard of what actonel does, but i have heard of it. Is it the same as fosamax? Has it helped you?

Many hugs,
Krista

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

Oh, Epoh! I totally understand your apprehension! Especailly after hearing that any one of those side effects can be rare. When i hear that word, "rare", i want to run for the hills! It was 'rare' to get colorectal cancer at age 38, and it was even 'rarer' to get soft bones from the radiation!

Is it the fosamax that causes bone necrosis, or the Protos? They also offered me a shot that you get once a year that is supposed to actually grow new bone. I don't know if it's the same thing you have there, but this shot has only been on the market for four years, and it caused bone cancer in lab rats. I know rats are different from us physiologically, and it doesn't mean humans will get bone cancer from it, but...thanks but no thanks. Any risk for more cancer is too big of a risk for me.

I don't remember if i mentioned that i'm seeing an osteoporosis expert next month who gives hundreds of these shots to people. I'm worried she's going to try and talk me into them. If she tries that, again, i'm running for the hills. Broken bones are painful as hell, but they won't kill you. There has to be a holistic way to regrow bone?

Keep in touch, epoh...maybe one of us will discover the secret!

Many hugs,
Krista

epohdnayoj
Posts: 6
Joined: Sep 2008

Sorry Krista if I seem to be alarmist. That's not my intention and I would hate to think that anything I said led to someone abandoning a prescribed treatment. As I said previously, I am stalling re commencing treatment for osteoporosis because I am scared of the side effects. I'm scared that I risk compounding my already dire medical condition - one disease leading to another, to another... But the disease itself, left untreated, scares me too. Krista, my doctors have stressed to me that there can be some very serious consequences from broken bones e.g not healing properly and becoming infected. Broken bones can appear spontaneously with this disease, as we both seem to have experienced already, not always as the result of trauma.

Just to explain a little more though as to why I am so reluctant to commence treatment yet. Post-surgery for rectal cancer, I researched that disease and my treatments obsessively and have eased up somewhat now but it has become routine for me to look into every symptom and every medication prescribed. I found some alarming information about Fosamax and the possible side effect of osteonecrosis of the jaw, and when I discussed this with my doctor he agreed I should defer treatment until I felt more comfortable about commencing it. Coincidentally, in the meantime, there has been some publicity here in our media about the association between osteonecrosis of the jaw and the drug group, bisphosphonates, of which Fosamax is one (and I believe Actonel is another, but can't recall with certainty). The publicity has been alarmist but it has served its purpose as far as I am concerned - it has scared me.

I've been reading all I can about Fosamax and other treatments for osteoporosis, and making enquiries of others who are being treated for this disease, trying to weigh up the pros and cons of treatment, so that I can come to terms with the side effects of treatment (as they all potentially have some side effects) and what risk there will be for me one way or the other.

One thing I fully understand is that osteonecrosis of the jaw is a VERY RARE side effect of bisphosphonates. The risk is apparently something in the order of 1 in 100,000. It is more likely to happen with bone cancer patients who are receiving very large infusions of bisphosphonates, or sometimes those who have some sort of trauma to the jaw, such as tooth extraction, whilst taking bisphosphonates for osteoporosis, or even MORE RARELY spontaneously in others being treated with these drugs. It is the last two risk groups that worry me.

Like you Krista I feel that I have fitted into the "rare", or "very rare", group just too many times. I am conscious though of the fact that I must do something to treat the osteoporosis. I know I have to make a decision SOON. I really do want to treat it as I dread the possible consequences of leaving the osteoporosis untreated. My doctors tell me that diet (and dietery supplements) and exercise are not enough to fight off this disease.

A catch 22 situation... ?

It gives me hope and encouragement to learn that both yourself and Joy have had no side effects from your medication. That is wonderful! Just the fear of feeling unwell on a daily basis, which some people do experience whilst on medication for osteoporosis, is another deterrent for me.

You may have heard this before or even said it yourself, but except for my "dire medical condition", I'm otherwise healthy! And feeling wonderful! I have energy and vigor (most days) not felt for years. And my last scans showed no evidence of cancer!

I'll keep you informed. All the best to all.

epoh

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