Donnarush's Cancer Blog

3 years out

Hi Everyone. Hope the summer is treating you kind...It's been awhile,so I thought I would share my latest experiences..I have read many of your posts, so I feel compelled to respond to late treatment side effects, osteoporosis, etc...I had an anascope Thursday..All was good...I had burning, discomfort for awhile. Time to get checked...Just late term radiation effects..Proctitis...Now for the osteoporosis news,I developed SEVERE osteoporosis..Of course,I am post menopausal, but, I'm 5'10" and weigh 180...Not a typical candidate...My scan was horrible..So, an injection of prolia was the start of it....I now have severe joint pain and I have to have a tooth pulled today..Severe infection and cracked tooth..I NEVER had trouble with my teeth before..So this is quite troublesome to me..I am very disappointed with the way things have transpired...So for all of you whoever doubt these things,you are right on! I will not take another injection..I will exercise more and take my necessary vitamins...It's our bodies and we know best...There are late term side effects from the radiation. There are side effects to osteoporosis meds...The good news is no cancer, but the side effects from everything else is wearing me down..I pray alot, which helps me cope...Thanks to all of you for being here..We NEED each other...That is all there is to it...I will keep you updated...

All my best..Donna

Meagen threw a punch at your cancer.
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Donna .. Good news of no cancer and that is awesome!...Good to have a plan in motion to take care of our bodies and yours sounds solid.. I will be praying for you my friend Congratulations on 3 years out!.. big hugs and love and always prayers Sabina
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We do need each other. It is easy to get lulled into a sense of complacency as though everything is "fine" but the reality is that we are somewhat in a special needs category after all that radiation and we need to be proactive and look after ourselves. Stuff may likely affect us. I have been putting off a few things flying my banner of "not enough time" but your post reminds me that I need to get back to taking care of me. I cruise along in my life and am able to forget all that happened to my body and then I hit a speed bump. I do not know what I would do without all of you here to share with and listen to. I am so sorry you had to go through this but thank you for the caution on that shot. If I come across any info on how to help with your Osteo I will send it your way. God bless!
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Thanks for sharing that info on Prolia, I too, am worried. Good news about no cancer, yeah!, but the osteoporosis part sucks. I will say some extra prayers for you. A non cancer friend reversed her osteoporosis strictly with exercise. Maybe a PT visit? They might be able to direct you on specific weight bearing exercises.
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Unfortunately, I am both a runner and a weight lifter and I still was diagnosed with severe osteoporosis. My osteo doc actually told me that weight bearing exercise is minimally effective in increasing bone density. Needless to say, I was very bummed to hear that. Despite that, I continue with the exercise and I am planning on holding my ground and saying "no" to Prolia.
First off ... Congrats on the NED that is awesome. I think the side effects hit us both physically and emotionally, mostly because others (including docs) don't understand that those side effects linger. I remember my med onc doc telling me at 4 weeks out that I should be back to normal .... UGH!!! Thank goodness we have this site where we can talk to people that know better. Otherwise I am sure that I would feel like I needed to be checked into the looney bin. Will be praying for you.

HUGS!!!
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HA. He meant the "new normal" but he had no clue. Medical schools should have classes where patients can tell doctors-to-be what it's really like!
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Hello Donna...will just chime in here and agree that those osteoporosis drugs appear to really be on the NOT TAKING THAT list. As much exercise as you can tolerate...check out Dr. Christine Northrup's article on A Diet That Protects Against Osteoporosis. (There's a link on my website). A hug...
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Hi Donna - it is good to hear from you! So happy no cancer and I definitely can relate to the late term effects. I am 7 years out and still have problems! I know it sucks but we are here and functioning which is good! The trade off is worth it although I for one do get sick of these after affects. I also pray everyday and you are on my list to be watched over.

Take care and keep in touch!

Nancy
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It's good to hear your story Donna. I think it is suprisingly encouraging to reading folks stories, and know my situation is normal for our condition. Thank you for your post.
I hope the problems settle down soon.
Jean
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Hi Donna--

I am happy to see your post, despite the fact that you have been dealing with some issues, mainly the osteporosis. That is my story too. I was on Fosamax for awhile and discovered that it was making my hair fall out, so I discontinued it, to the displeasure of my gynecologist. She then sent me to an osteoporosis specialist who had me get a DEXA scan, which showed that my osteoporosis had improved slightly to the osteopenia stage. I dodged the bullet of having to take Prolia, which was his initial suggestion. I will see him again in August and will be curious to see what he has in store for me then. I also have been diagnosed with chronic kidney disease, intially stage 3, but improved to stage 2 at last check. The two diseases are related and getting my osteo doc and my nephrologist to communicate with each other has been difficult. I really do not want to take the Prolia and will kick and scream in protest if that his suggestion when I see the osteo doc in August. These bisphosphanate drugs have too many side effects! Ironically, I believe that I currently have a cracked tooth too! I will be seeing my dentist in a couple of weeks to get the verdict on that. Radiation is the gift that keeps on giving. This is only the tip of the iceberg for me, but I won't mention all of the other stuff!

Hang on to the good news that your cancer is gone. I wish you all the very best and hope you'll keep us posted.

Martha
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Congratulations on being 3 years out. I finished my treatment in February and the prognosis looks good but there are so many unknowns as to what my 'new normal' will be. I'm gaining much insight into it from reading everyone's posts.
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Happy Birthday week!! Jean
Thank you Jean...I am glad we are all here for one another....
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weird feelings

Hi everyone...It has been a long time since I have posted...Hope all is going well for everyone. Been dealing with mom and her alzheimers...I don't know what is worse....cancer or this mind disease..Anyway, recently I have been feeling a little burning in my rectal area...It has been three years post treatment for me..Still think I am suffering with post radiation side effects..I have now had 3 compression fractures due to the severe osteoporosis and was put on prolia injections..UGH...Just wondering if anyone else experiences rectal discomfort post treatment??? And is it necessary for yearly colonoscopies or just check up??? Thoughts please!

Thank you so much....my best to all....Donna

Sabina sent you a prayer.
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Hi Donna!
I had several years of caring for my mom in the last years of dementia.. Very rough time. Hang in there.
I am nearing 2 years post trx and depending upon what my stool is doing at that time... Frequency, etc it can feel a little bit burning sensation. I think we can not underestimate the damage radiation does to us!
As far as follow up.. I am now on a every 6 month scope and DRE and yearly ct scan. I have not received a colonoscopy since diagnosis... Only a flex sign under twilight anesthesia to take a good look at everything about a year ago.
Take care.
Sara
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Oh yes. Any physical challenge to any of those 3 body parts and there is the burn. I should just use the coconut oil and Aquaphor every day the rest of my life.
Sorry about your fractures.
Helen just sent out these 2 websites:
http://www.huffingtonpost.com/christiane-northrup/osteoporosis-treatment-a_b_585528.html

http://www.drnorthrup.com/three-drugs-that-i-would-not-take/
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Hi Donna...

First! Yearly colonoscopies are NOT needed for follow-up post anal cancer!!! The basic NCCN guidelines are for an anal exam-anoscopy every 3-6 months for 5 years after treatment. Exams for colon cancer are completely unrelated. While the prep is not fun, any kind of surgical intervention/anesthesia is always a risk and I don't need any more risks!

Radiation has long-term side effects that you have to fight with exercise as much as you can - swimming if walking is too hard? And yes, rectal discomfort comes and goes for years...I am heading for six years post-treatment and still have occasional problems. The treatment is a huge assault on your entire intestines and full recovery can take a long time. Hang in there!!!

So sorry about your mom. Being a caregiver for an Alzheimer's patient is so hard. Just read a piece in the paper by Reagan's daughter, Patty Davis, about how hard it was for her and how she found some relief in a caregiver's group. Maybe there is one somewhere near you?

HUGS!
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Definitley. It scares me every time it happens. Once bitten twice shy!
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I'm sorry about your fractures, Donna, and I hope they have healed. I still have occaissional pain, especially if it's been an active day in the bathroom. I've had colonoscopies every 3 to 5 years because my mom died of colon cancer and I've had pre-cancerous polyps twice. Anal cancer is not related to colon cancer - I won't have another colonoscopy until 5 years after my last one, so it will be 2020 - wow, strange saying that! Why do you have one every year?
Hi Julie..thanks for the reply..My Dr. always did colonoscopies for the past 3 yrs. I am trying not to have one this year..I think they like the money..some of my drs. have been very self serving..long story..i think i need to change my team...hope all is well with you..
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I have been having severe hip and joint pain 1 year 5 months out from treatment.
I changed oncologist recently and he ordered an MRI which showed severe bursitis along with a labral tear in addition to severe hip degeneration. There appears to be hairline fracture. I have been referred to an orthopedic specialist, but they did not accept my insurance, so I am waiting for a new referral. I have only had an anoscope with a sigmoscope done soon after treatment due to severe stomach pain. Unfortunately, my bottom has been hurting more recently than several months ago. I believe it is due to using allergy medicine which drys me out. I think pain is something that comes and goes as radiation damage continues to effect your body. Prayers for healing.
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I keep repeating the same things. HBOT ( hyperbaric oxygen treatments) help the healing. Best of luck. Don't give up.
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Hi Donna, I have been having MRI's recently and I have bone degeneration in this area. Which they tell me is from radiotherapy. , As for burning sensation check it out without a doubt it's probably nothing but never presume . Sorry about your mum, it's a tough time 💜
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Vital Info

Posts

February 17, 2014

September 21, 1957

Cancer Info

Anal Cancer

May 18, 2013

Stage 1

No

Fluorouracil (5-FU)

no

August 9, 2013

rectal bleeding

2 rounds.. mouth sores

25 treatments

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