Introduction: Shaunjon, 47, I went through pelvic radiation in 2009. I have been through a lot, unnecessarily, unfortunately.

[Shaunjon]

My profile kinda goes over the just of my situation. I've been through pelvic radiotherapy in 2009. Chemotherapy in 2014. I've learned a lot so feel free to ask anything. I have questions but nothing that important. In my situation, which would be considered pretty standard, I know without a doubt long term health affects from that treatment has destroyed my hips, femurs, bone marrow, knees, and honestly life has been hard for the last year or two. I would like to thank everyone for being here and thank you to sponsors and all those involved in this communication area.

[Dustyangel]

Hi Shaunjon, welcome to the group, I have found this group very helpful and there is lots of advice taken and given. Sorry to hear that you have had such a rough time. I can relate to some of your long term issues and reading your bio it does make sense to me. My white cells are also permanently low, hips and lower back now have osteoarthritis but no one taking the claim for that, oncology said its the menopause which I was told would be immediate, menopause clinic said its the radiotherapy, don't care who's fighting with who I just know I didn't have it before treatment! I just don't think they tell all the possible side effects, until you question them with the things you present them with. 🤔

[Shaunjon in reply to Dustyangel]

Hello and thank you for the reply. Yeah they do not even come close to informing patients of the true outcome. Which I think is a bad deal. My bone marrow is needed, required for daily life, my hip joints required, just to get out of bed to make it to the bathroom. The closest our discussion got to those major side affects was about banking sperm because 50% chance sperm may be damaged. Shoot 50% that is not bad must not be to bad on the body, sperm in my mind are delicate. The thing I noticed is everyone getting treated for cancer was 20 years older at least than me. Most had their 50-60 year old kids with them for support. And finally, yeah I had to figure out my damaged bone marrow, osteo necrosis, and lymphedema were long term side affects of radiation. Just last week I informed my primary doctor why my red, white, and platelet count are so low because he was stumped. I can't have my hip surgery with platelet count so low because blood won't clot so it's risky. I do most of my own research and remain smart about what I believe. I've lived it in reality so it is easy to see the truth. Time and Time again doctors react as if it's the first hearing about anything I go through. I appreciate you replying and am sorry you have to live in pain and life just is not as it was meant to be. I remain hopeful. In my situation I did spray round up weekly for 20 plus years at award winning locations. I can still taste the chemical taste. I have attournys working on my non hodgkins large B cell predominant case against Monsanto. My case is very strong and it may not solve my health issues but might make life a little better.

[Dustyangel in reply to Shaunjon]

Good afternoon to you, I was told that most of the bone marrow gets made in the Pelvic region, and obviously its not well replenished after treatment to that area. I do remember them telling me that I would go straight into menopause, but didn't understand the implications of that at the time, and probably you aswell with the male side of things. I also remember I did get a platelet infusion before I had a procedure for the brachytherapy. Would that help you I wonder a transfusion of blood? For your blood counts. I had a fair amount of transfusions for red and white cells as they were almost non existant at times! It could have been the chemicals that you have been around for so many years that have contributed to your non hodkings, hope you get somewhere with that as you say it might just make life a little better than it is. Good luck and fingers crossed for you. Life as we know will never be the same as it was before, with the constant reminders ,but we have Life, just have to get on with it the best ways that we can manage, some days it's really tough going!

[Shaunjon in reply to Dustyangel]

Hey, thank you for the reply. With any luck and a good attorney I feel like Monsanto(Round Up) owes me a lot. If not for spraying that stuff in a fine mist every weekend for years I would not have had anything. Medical complications got in the way of full college scholarship for wind turbine technician and so much more. As far as infuse or transfuse blood you might be right. And something I left out was prior to chemo in 2014 I was life flighted to Oregon Health Science University in ICU for 27 days barely alive with the lowest hemoglobin and hermaticrit levels ever seen by the main doctor there. Not expected to live through the night. Him and his wife stayed up late monitoring my condition. I woke up a few days after arriving there. My local hospital used the 4 pints of blood they had on me and over the next 17 days I had 27, no joke blood transfusions some 2 per day. Finally my hemoglobin and hermaticrit levels began to come up above single digits. I have been through a lot. My doctor refered me to a hemotologist last week so I made that appointment today when they called. I believe the plan Is to needle in to check for bone marrow in my hips or its condition. November 9th. I also requested my medical records tody. I've seen them all once before but I want to prove to myself the pathology is just a blank page that says "not available,". And my round up attourney has been trying to get ahold of me called today actually. And yes when I wake up and realize I can't just flop out of bed and get up and walk to the restroom. Or the frustration for me trying to put shorts on sitting down of course and my foot is somehow caught in a pocket or in the same leg opening I can hardly hold it together. I think " this is what life has came down to, I can't actually just put on a pair of shorts". Bigger thing just walking I can't wait for that day. My left hip and knee joints are bone on bone with no head on my femur, they are continually getting worse with every step. Without moving anything my femur will drop into place or settle and that is very mushy, unsettling, weird. One of the worst things is trying to hold back those involentry stretches of my torso or legs, oh my when my quads flex almost dislocating my hip joints knee joint. Stem cell transplant is something I'm going to look into. Do you mind me asking how old you were when you went through it and how old you are now? You don't have to tell me. Mine was 2009 so 14 years later serious joint damage. Again thank you. I will add that it is great to be able to communicate with another person that has experienced similar life events.

[Dustyangel]

Oh my goodness you have been through alot, its not just physical pain but also the mental anguish aswell. I've got an appointment for bloods in 2 weeks time see what that comes up with, all the best wishes for your upcoming appointments I hope you get the answers you are looking for. My treatment ended just before Xmas 2019 and told them at the end of January 2020 about all the issues ,they said nerve damage wasn't until March 2020 I had an mri and it showed up 3 insufficiency fractures to my pelvis had them since also. Have bowel and bladder issues fatigued most days brain fog ,and now my joints in my knees and even my shoulders ! I dont mind you asking I was 45 when diagnosed I'm now 48. Got 2 more clinics to go, in 2024 then I'm off their books! 🙏

[Shaunjon in reply to Dustyangel]

You are saying an MRI within a year or two picked up fractures? See my orthopedic surgeon looked at my MRI, verified there was enough good upper femur bone to accept the replacement hip but he also told me what I was feeling in my knee is nerve pain because all the nerves run together so it's transitory from my hip. That was 9 months ago and my knee is very bad. Way more than nerves, in fact my hip is worn enough that the intense pain has subsided, my knee cracks hard every single step. If I ever put weight directly down on it like to put shorts on one leg OMG my knee joint cracks two timeds I can feel it coming and I literally drop 1/2" in height. I sit for everything now, I have to because that is so scary. My right shoulder has started cracking over just the last few months. Well I hope you're blood labs come out good. I'm more than worried that life is not fixable. I really wish doctors would realize when a patient is smart enough for a little more than the standard milking Americans along until it's too late. I'm praying for the both of us among other things. It is disturbing that radiation is used so freely. There is no way doctors are being up front with patients about long term effects. I actually found a research paper looking at pelvic radiation and they come out and say it is devastating to bone marrow, small blood capillaries in hip joints and talks about people's back vertabrae being damaged.

[Dustyangel]

It was 3 months after my treatment ended when I had the mri and it showed up the insufficiency fractures as I had to see the oncologist fortnightly at that time. Every appointment I was telling them that I was in agony and my left leg felt dead! I had to physically pull my leg up to get dressed etc. Took me 6 months to drive my car again! It's true that all the nerves run together do you get neuropathy too? The trouble with my knees started about the beginning of last year, and this year the shoulders. Experienced broken capaleries in my bladder which clotted, so I couldn't pass urine I ended up in a+e 3 times before I said please can you refer me to urology and not keep sending me to gynecology! I knew where the blood was comming from pain in bladder was unbelievable! But that's all sorted out now and never had another episode since. Life is different now it's never gonna be the same, we just have to try and make the best out of it, I know this is easier said and done. I totally agree with you there on that they don't tell all the side effects , I suppose if they did nobody would have it. But they should at least say there's a small chance this or that can happen at least then we could be more informed. I'm very grateful to the NHS (I'm in scotland) really I am without them I wouldn't be here, so I'm not bitter ,but quite sad that this is life now just the constant reminder . Wish I could just forget what has happened some people said I was in denial I wasn't in denial I knew what I had and knew what I had to do, think it's was auto pilot or something. I really do hope you are fixable to give you a better quality to your life and start living life in a better way and to have better mobility. I'm worried for the future as the arthritis in my lower back and hips is degenerative, and whatever else that may appear! Oh another thing I have reynauds in my fingers not sure if that is connected in any way. I do hope that you have good support around you,

[Myken in reply to Dustyangel]

I had radiotherapy 30 years ago when I was 37, I have had lots of scares that the cancer might be back, it started as a missed diagnosis of a melanoma being removed, told it was benign, went on to create 5 tumours in my left leg, had surgery, then the cancer spread to my pelvis. That was when it was decided to give me radiotherapy as they couldn’t operate, chemotherapy wouldn’t work. They told me to put my affairs in order, as usually with my diagnosis you have maybe 9 months at the most.

I am still here 30 years on, but boy oh boy, these last 4 years have been hell, one orthopaedic doctor told me after checking my MRI that my whole pelvic area was frazzled with the radiation, so it has affected my spine, the bones, nerve endings. I have Lymphodema in my left leg, can’t feel most of my leg, that in turn has caused me to have many falls, some more serious than others. I’m on so much medication for the pain, feel like a zombie most days. Last year I finally got an appointment with a pain management team here in Southampton, Uk, they have helped me so much, I’ve had some bereavement counselling at the local hospice, as it’s like a bereavement losing your past life, although I lost my darling boy who was only 28. I have to say it has helped me to deal with my everyday pain. It’s not always easy, I feel very frustrated a lot..just thought I would mention to you DustyAngel I’m also Scottish.

This site helps a lot too, as they say there is always someone was than you.

When the doctors tell you…”at least you are alive and still here”

I want to scream.

Thank you everyone for your views and support.

Ellen x

[Dustyangel in reply to Myken]

Hi Ellen, thank you for your reply. You have been through alot, it's good to be here as others do understand where we are all comming from. That is so true there are always people worse off but nobody wants to be that person, it's a struggle living with pain and getting fobbed off so many times feeling like your not believed until they can see it for themselves on scans. Yes we are here, but that dosent give the right to be dismissed at every opportunity. Getting past from pillar to post no one seems to take responsibility, I dont care who fights over what, just need to be listened too! Frustrating it is. It's true what you said this is our life now the past one has gone, scared for the future and what that may or not bring. Its the unknown . So sorry that you have lost your boy, going through that and everything else must be horrendous. X