Long-Term Effects of Treatment — Cancer Survivors Network

How to battle late effects

ALLsoldier — Tue, 29 Aug 2023 15:48:14 +0000

Hello, I’m new. It’s been validating to know I’m not alone even if the posts are old. Sadly I can relate to so many of them. I’m a survivor of leukemia over 5 years dealing with a ton of late effects of treatment. I’ve gone through chemo, radiation, and a BMT. And I vaguely remember a 3 page list, front and back, of oral meds and injections that I had to do after all of that. I mostly deal with fatigue and cognitive issues but then there’s also the random body pain, heaviness, neuropathy, cramping, and nausea. My doctors have ruled out other causes of my symptoms but will not admit they are from treatment. I know they are 100% from treatment. I often leave my doctors’ appointments disappointed and frustrated because I should be grateful that I’m alive. But if I’m perfectly honest, I’m not. Yes I’m in remission but this is no way to live. I was a highly functional, active, and educated person prior to this and now I struggle with the simplistic things. I have a young child so just talking with other parents is draining and and defeating because I can’t explain what this is like when I look “normal.” I have a post-it that says NO just to remind myself not to put myself into situations that make the fatigue or cognitive issues worse. I’ve taken steps to try to improve things like braintraining apps, writing everything down, and conserving energy. I’ve tried working out when I feel good, but it puts me out 4-5 days of recovery. Does anyone have any advice for beating the fatigue? I know if I don’t exercise my body will ultimately shut down. But how do you exercise when your body feels horrible for most days? Also, what motivates you to keep going? I feel like I’m fighting a losing battle.

Really long term effects of cobalt radiation?

KM25 — Sat, 27 Dec 2008 05:41:43 +0000

Following the surgical removal of a medulla blastoma (base of brain), I received cobalt radiation treatment to kill any remaining errant cells. This happened 40 years ago. Since then, life for me has been fairly "unremarkable". During the past half dozen years however, I have slowly lost control over the coordination of my legs and sense of balance. Conversations with a neurosurgeon and a professor of neurology (UCSF) revealed that the most likely cause may be that adjacent, health neural cells also deteriorate about 40 years after being exposed to radiation. Anyone have similar or other symptoms after this many years?

Natural Cancer Treatment?

adison — Tue, 05 May 2009 18:59:03 +0000

How about Natural Cancer Treatment? Who have any information, let's share

How do you move on after treatment? (severe hearing-loss, neuropathy, weakness, brain fog, etc.)

J_Logan — Wed, 07 Aug 2024 22:40:24 +0000

Hi,

My name is Logan. At 35, I was diagnosed with testicular choriocarinoma with mets to the liver and lungs. For men with this cancer, a bHCG level over 40,000 is associated with poor prognosis. Mine was 437,000.

One year, eight rounds of chemo including two that were high-dose with autologous stem cell transplants, an orchiectomy (testicle removal), and a liver resection later, and I've now been cancer-free for over a year.

I beat the odds. The researchers at Indiana University are the pioneers when it comes to the kind of cancer I had, and they told my doctor I was too far gone. "Just try to make him comfortable," they said. He didn't listen, and I survived. I should feel so, so lucky every day.

But…

Before cancer, I was an active guy. Not an Olympian by any stretch, but athletic. I golfed regularly, and enjoyed softball and volleyball. I also had a career in communication. The high-dose chemo treatments, with their platinum-based chemo drugs, absolutely destroyed my hearing. I have hearing aids now that allow me to get by, but I can't manage conversation in noisy environments. In groups, it's all just noise.

A year later cancer-free, but I suffer from severe-hearing loss, neuropathy, weakness, and brain fog. I'm married with four kids, and we're busy with our church, but I'm withdrawing more and more from everything. I'm alone, depressed, and finding it harder and harder to get out of bed in the morning. I don't know what I'm getting up for. I don't know what I'm working for. And I don't feel like I can tell anyone close to me how I feel.

How do you move forward when the life you were supposed to have is ripped so suddenly away? How do you recalibrate when you go from young and healthy to feeling like an 80-year-old with multiple handicaps?

Yes, I'm whining. I know that. I could have died. I should be so thankful. Which, of course, just adds to the guilt over all of this.

If you've made it this far through this, thanks for taking the time to read it. I'm treading water, but surely I'm not the first. Have any of you felt like this after treatment? If so, did you find your way out? If you did, how?

Fatigue

pamaluka — Sun, 11 Aug 2002 15:53:07 +0000

I complete my 6 cycles of Carbo/Taxol on 15 May '02 and have been experiencing alot of body aches, weakness and this overwhelming fatigue. I can just be sitting at the computer at work, and all of a sudden I feel like I've been ran over by a Mack truck! While having my treatments I did have weakness and fatigue that would occur the day after my treatment, but it improved by the time I had my next go-round, (21 days). My Dr. said that I have Neuropathy and really couldn't tell me when or if it would get better. It seemed to take me forever to get back to work, and I'm still not working full time yet. I've been on pain pills since starting my treatments and have found that they actually help in the fatigue. My problem is that my husband's disabled and although he gets disability, I'm really the bread winner, so to speak, and I really need to get back to work full time. My question is, if I can manage the fatique with the pain pills will I be doing myself harm? I have a co-worker who's really concerned that I'll get hooked on the pills and think exercise might help. So far exercising hasn't helped... How long is to long to be on pain pills? Thanks in advance, Pam

Dex addict or getting better or worse confused

Dexbaby — Thu, 19 Sep 2024 15:37:03 +0000

Hello to everyone on this forum. I thought to subscribe and give a life experience while I was long time on this medication. I started this med since I have had a cough for several months and I mean a cough that no other medication like antiviral or antibiotic was helping to get rid off it. I couldn't tolerate and was getting worse. After taking Dexa good news the cough has gone for good, but a bucket of sh....t worsening strange conditions I got back from Dexa. I call it the Evil drug. Makes me better for one thing and gives me back a million bad things. So before I go any further i would like to intriduce myself and say that i am a woman of 45 y.o. have been to Uni and got diploma in Law, Psychiatry and was a grammar teacher before came to UK. I am a pretty strong whealed person and never got hooked so badly on anything like a medication or other strange things in life. But Dexa got me!!! So after taking Dexa and had few issues with myself i gone to study every little and big article about Dexa. Just to say in a short few sentences that Dexa is an immunity modulator and is created to resurrect people from near death, if sufferings are excruciating the doctors believe this drug should better wake you up and bring back from being dead, but the side effects are forgotten, you will deal however you can after that. So to say Dexa suppress your immunity, what that mean? It means that Dexa has a way of modulating your immunity or changing it for the time being and making you better. This modulator works wonders. Before our Hypothalamus in our brains is an other important gland which activates it's function. So Dexa access that gland which is a bit similar to Hypothalamus and works on your hormons which deal with food drinks etc. By doing that we get hungry eat better, our brain focus on enjoyment of food and so our immunity gets better hence we get positive for a short "now" time and get better. In some articles I found it was said that it is not recommended to be vaccinated for at list couple of months after taking Dexa. As your immunity respond still to that medication. And the vaccin won't work the way is ment to work. Before Dexa which i call it life before Dexa and life after Dexa I was a walking skeleton really like a stick. And I never was enjoying any foods. I could go hungry for weeks. So after starting for about a week or so being on Dexa I felt soooo good that I have never felt like this in years. I was eating lots. I actually was thinking of food as soon as I was waking up from the bed. I was driving and eating, I was cleaning and eating, I was doing whatever else and eating full stop and drinking like an animal. I put on a bit, I got a better body. Actually as a woman I got so beautiful! My brests were bigger, I soon changed from an A cup to a DD cup. My but got round. And I was remaining still slim. My husband couldn't keep his eyes off me. I was on a cloud 9 as they say. Everyone was mentioning how beautifully I became. I suddenly felt I could deal with everything in my life, all the house chors and the cats (i am breeding rare exotic cats) and working as a beautician from home and felt as I have a greater amount of energy than before. But all of the sudden one day boom! I couldn't come of the bed. While i made terrible fuss of myself I did come on my legs to find out that I couldn't stand properly because of a terrible back pain I mean it one real bad pain that kept me frozen. I hardly was moving, I was stepping so slow that I believe I needed a walking stick to help me moving to the WC and back. It was so terrible that I couldn't lift my hands up and down. My husband took me shopping in this state (well I must say that I am athlet in real life and no one has ever bit me up at running) so knowing that my husband though I am pretending moving like 85 y.o.person. I have realised he doesn't trust me and for the first time in my life I felt hopeless. I didn't get that was a Dexa side effect. So I thought I give Dexa a miss for a week and than cameback to it again after one week as the med may doesn't have effect while I am ill but after taking Dexa again in about 2 weeks in couple of hours it cleared up the problem. Well I thought why didn't I take it earlier. I could have been better long time ago. But in those couple of weeks while I was off Dexa I have seen stars in my eyes. My vision got blurred and I bought myself a magnifying glass and carried with me in the pocket to read I also got numbness in my both arms to the point that was waking up from terrible discomfort to an excruciating pain. I also got hot flashes so badly that had to take showers 5-6 times a day and change my cloths totally. That was while I was off Dexa, but when I got back on it I got also very hungry. I was going shopping for food like no day tomorrow and was unwrapping food and eating right in the shop making my excuses and leaving the food box in the shopping basket to be visible I will pay for it. I got also so thirsty that was drinking like a full case of drinks like fanta or others. I became a gourmand and everything food related eating and drinking made me terribly sleepy. As soon as I was eating my brain was automatically shutting down in sleep. Whether I was on a chair, at the table or anywhere else. I got to sleep with my head in the food plate like a crack head. When I have noticed so many bad things happened to me I soon realised is from the bustard Dexa. Every time I was thinking twice to take it or not again. But as soon I was off it, in couple of days I was waking up worse and was going back faster on Dexa than before. I have read a lot about it since and knowing what it does to me I wish I have never been taking this in the first place. But I found few other supplements from the sports area of life do get on with it and stop the drug being so nasty to me. So taking together with Dexa some brain focusing and energy boosters which keeps me on feet, non-sleepy, none-hungry, non-thirsty etc. all day long. I do feel I need to go to bed when I get sleepy. I didn't tell you what was more important is Dexa made me psychopathic. I was finding myself shouting at my husband for no apparent reason. Everything was irritating me and I wasn't tolerating hot or heat around me. I was going with a short sleeve in minus one in the winter and felt normal. I was running to clean and feed the cats like was having Toshiba batteries in my butt and all this I am taking as a positive. But when Dexa decides to be nasty to me puts me right down in the bed and I feel I loose al responsibilities and the life turns nasty to me. I became to understand the cocoon which Dexa creates around me, but I sort of live in confusion to this very moment I am writing this article. It also makes me emotional, I can easily cry, or ask apologies for pretty much all chappy things which don't need apologising. I am sort off imbalanced psychologically but hide this side practicing meditation and positive thinking. One day Dexa bits me in the butt, the next day I take back control. All depends how I approach. I do find myself swearing to the doors and walls and believe God is not there to help my soul to recover. I feel somehow Dexa is like a hook and anchors me back sooner rather than later. Dexa became like something I want to get rid off but Dexa doesn't let me go. I love Dexa for good times and I Dexa for all those bad days which decides to eat my life. I am still on it. I do bring it back from my home country in small amounts to keep me good on the days I feel I am bad. I ask my cousin to send over via courier as in uk gp doesn't prescribe this drug, you hardly can get a doctors appointment if you lucky. Dexa let's see what else you do to me?

So in conclusion for everyone who lives close by a person on Dexa please do understand this is a strong drug which changes a person's mind radically. And is terribly hard to get rid of it without getting worse. Apologies for in depth description but it's like I only described here 5% from all I encounter on Dexa.

Thank you so much for all who read this article, I would like to know it helps people to understand the psychological mechanism of how Dexa works. Hopefully and I really wish I could come off it, but is like nearly 10 months I am still hooked on it. On and off. So I worked it out that if I get worse while on it, I immediately stop taking it for exactly 2 weeks. Chris knows how I deal with pains in my joints and stiff hands makes me cry like a baby. Than I get back on it and I feel soo good again, it clears up all my pains and I am feeling like God again untill kicks me on an other issue. Boom! Bad times again for 2 weeks. So on and so forth. Never ending.

Sexual therapy

RaeRae72 — Sat, 29 Jun 2024 18:47:51 +0000

Hi. New here. I’m looking for a sexual therapist. I’m a 51 year old female. Stage 4 metastatic melanoma. In remission for 3 1/2 years so far. In a committed relationship for 14 years so far. I desperately need some advice and/or therapy that’s free. I live on disability.

Low WBC and Brain Fog after 2+ years

LoRider — Tue, 17 Oct 2023 18:24:06 +0000

Frankly, I am tired of my oncologist saying "it's part of the process" and "it's different for everyone." I am still battling brain fog since chemo and radiation completed in Spring 2021. And my WBC have never rebounded either. My last test showed 2.9/uL when it should be 4.0.

Does it ever get better?

Effects of IMRT pelvic radiation for uterine cancer

RoseyR — Thu, 17 Mar 2011 14:20:41 +0000

Have been told that IMRT pelvic radiation has fewer side effects than EBRT but am still wary and need to hear from those who pulled through pretty well and those who haven't. Please indicate whether you ALSO had high-dose brachytherapy as well and whether you were treated at a major cancer-treatment center. Can you comment on any of the following issues? Did you have diahrrhea for more than 2-3 months and has this seriously restricted your life? Has it caused bone pain (aching in hips or lower back) within a year or two? Did you have to avoid eating high-fiber food for more than two months? Has it caused neuropathy in your legs or feet? (If you also had chemo, especially taxol, are you sure that it wasn't chemo that caused this effect?) Appreciatively, Rosey R

Power Port

IreneLove — Fri, 12 Jan 2024 18:36:27 +0000

Hi I was diagnosed with lupus and a lung disease back in January 2014 and the doctors placed a power port in due to have bad and partially working veins. Here it is in Jackson 2014 and my port is not working properly anymore. It’ll flush but won’t draw blood any more and can be a little painful at times. What is it that I need to do about this matter I’m having?

Pain urinating after pelvis radiation

hayley08 — Thu, 16 Nov 2023 00:23:28 +0000

Ive heard there isnt much you can do for the pain. But ive noticed alot of people talking about pouring warm water on their vagina while they urinate and that it helps alot. Im justt curious exactly how to do it. Do you get in the tub or just sit on the toliet? Ive been doing everything I can to avoid urinating for the past 2 days. I know its not good to do that but this pain cant be good either. I never thought id be scared to pee, lol. Someone please help me. Im a single mom of an autistic 17 year old. We moved in with my parents but I feel so alone after find’n out I had cancer. Im embarrassed to ask queations or talk about certain things to the drs and even my mother.

Thoughts on Full Brain Radiation

LisaAnn68 — Wed, 08 Nov 2023 16:59:27 +0000

Hello,

I am interested in hearing about others experience with full brain radiation for quality of life.

We have already been told this is not curable; however, I'm not sure receiving full brain radiation will give my father "quality" of life. He is already suffering from a speech deficit from having a lesion removed from his brain on October 27th and some other minor cognitive issues, he gets extremely frustrated to the point where he physically clenches his fist and curses. I want what is best for him but not at the expense being extremely sick and having more deficits.

Looking forward to hearing any thoughts.

Lisa

Dry mouth

majaved — Sat, 17 Dec 2016 21:43:36 +0000

i had total thyroidectomy last year and this year i am going through Radioterapy.

can anyone tell me how long will it take after Radiotherapy things can be normal like dry throat etc.

i meant to have 30 sessions of Radiotherapy but due to early signs of sore throat my doctor thinks i am not able to cope with 30 sessions he did only 25 sessions of Radiotherapy.

But now my sore Throat and dry mouth is killing me. i really appreciate if anyone can guide me how can get rid of this dry and sore throat.

i could not find magic mouth wash in LONDON. anyone can tell me what is magic mouth wash and how does it works.

Thanks

How common is it to have cancer three times?

cwb — Tue, 26 Oct 2010 21:05:09 +0000

A friend of mine has survived leukemia twice. She's been in remission for nearly 10 years. She was just told that they've found masses on her liver, lungs and uterus and has to have a biopsy done. Is it possible that this could be something other than cancer? Are there long-term effects of treatment that could cause this? We're hoping and praying that it isn't cancer again. She's been through too much and it would be unspeakably unfair if she is diagnosed a third time. I apologize for asking here, but I'm not sure where else I can ask and get an honest answer. I want to be prepared so I can be there as whatever support she needs.

Radiation Proctitis

mamado — Mon, 26 Jun 2017 15:05:45 +0000

Just wondering what treatments worked for those of you who ended up with Radiation Proctitis after cancer treatment. Aside from HBO, what treatments have cleared it or at least lessened the bleeding?

Late effects of Cobalt radiation in childhood

dlc123 — Sun, 08 Jan 2023 14:30:59 +0000

Looking for others of us who had Cobalt radiation in childhood for NON-cancerous, normal things such as enlarged tonsils, acne, thymus gland, feet for shoe fitting. These people are having late effects of Cobalt decay that start popping up in ones 60s. Some late effects are life threatening and certainly quality of life impacting. Thousands of Baby Boomers had this radiation "treatment" as children so if you have been affected, please share your story.

Thank you.

Radiation in Infancy

2manyrads — Tue, 01 Jun 2010 21:46:49 +0000

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. After surgery, radiation and chemo treatments for four cancers (leukemia, thyroid, lymphoma, prostate), three open-heart operations, four years under Hospice care, and twenty-six years after being told I had six months to live, I believe that one of the reasons I am still alive is to tell this story so we can learn to use medical radiation with greater caution. I am firmly convinced that the proper use of radiation saves many more lives than it threatens—I have benefited from diagnostic and interventional radiation, without which I would not have survived the very diseases that excess radiation caused. Please contact me at 2manyrads@gmail.com Thanks Ron

Chemobrain testing

bluerose — Wed, 07 Apr 2010 14:38:31 +0000

I am a 20 year survivor of Non Hodgkins Lymphoma and have many side effects and one of them is chemobrain. I first noticed forgetfullness but now have cognitive issues as well. Finally my doc sent me to a Memory Testing clinic where they test for things like Altzheimers and dementia and the neurologist put me through a battery of tests but the big thing that came out of that testing procedure and analysis was the validation from the neurologist/neurosurgeon that yes chemobrain does exist in some long term survivors. He said they are seeing it now and recognize it. It can appear earlier in survival as well and depends on what drugs you were on and radiation. 17 years ago when I first started to report issues with memory and other physical issues that I knew were related to treatments I was asked if I had seen a psychiatrist lately. lol. Now it has all come out in the wash with so many survivors living long past what years before we would have lived and with the advancements like computer contact through sites like this we started to realize that 'hey wait a minute it's not, just me'. Chemo brain is an accepted issue now that they realize that SOME chemo drugs do cross the blood brain barrier which before they thought they did not. The neurologist explained that it wasn't really 'damage' perse but a general weakening of the brain after certain chemo drugs, so that normal things like aging would not be as well tolerated in a brain that was 'chemoed' compared to one that was not. Anywho thought you might be interested in getting tested if you can find a Memory Clinic near you. All the best, Bluerose

Avastin for radiation-induced necrosis

gdpawel — Fri, 01 Jul 2011 06:31:22 +0000

When brain tumors are treated with radiation therapy, there is always a risk of radiation-induced necrosis of healthy brain tissue. Insidious and potentially fatal, radiation necrosis of the brain may develop months or even years after irradiation. This poorly understood side effect can occur even when the most stringent measures are taken to avoid exposing healthy tissue to harmful levels of radiation. In most cases, radiation necrosis of the brain occurs at random, without known genetic or other predisposing risk factors. The only treatment options typically available for radiation necrosis of the brain are surgery to remove dead tissue and use of the steroid dexamethasone to provide limited symptom control. But clinicians have not found a way to stop the progression of necrosis, despite having tested a range of therapies including anticoagulants, hyperbaric oxygen, and high-dose anti-inflammatory regimens. However, recent studies at M. D. Anderson have shown that the monoclonal antibody bevacizumab (Avastin) may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. Victor A. Levin, M.D., a professor in the Department of Neuro-Oncology and the senior researcher on the studies, said the findings suggest that radiation necrosis of the brain can be successfully managed—and perhaps even prevented—with bevacizumab or similar drugs. The need for such a breakthrough is as old as radiation therapy for cancers in the brain. “No matter what we do or how good we do it, we know a small percentage of patients who receive radiation therapy to the central nervous system will suffer late-occurring radiation necrosis,” Dr. Levin said. “We used to think it was the dose that was causing problems. Then we did a study and found that there was little to no relation to radiation dose or radiation volume—the necrosis occurred simply by chance. So it is impossible to say which patients will develop this problem; we just have to monitor them and hope for the best.” Like necrosis, the discovery that bevacizumab has an effect on necrosis can also be attributed to chance. Bevacizumab, a newer drug that prevents blood vessel growth in tumors by blocking vascular endothelial growth factor (VEGF), was originally approved in the United States for the treatment of metastatic colon cancer and non–small cell lung cancer. An M. D. Anderson group that included Dr. Levin decided to test the drug in patients who had VEGF-expressing brain tumors. “Some of these patients also had necrosis from prior radiation therapy, and we were struck by the positive response of those patients to bevacizumab,” Dr. Levin said. “We had never seen such a regression of necrotic lesions with any other drug like we did in those patients.” The observation prompted the researchers to design a placebo-controlled, double-blind, phase II trial sponsored by the U.S. Cancer Therapy Evaluation Program in which bevacizumab would be tested specifically for the treatment of radiation necrosis of the brain. The trial is small, having accrued 13 of a planned 16 patients, and is limited to those with progressive symptoms, lower-grade primary brain tumors, and head and neck cancers. But the results have been unlike anything the researchers have seen before in radiation necrosis therapy. All of the patients receiving bevacizumab responded almost immediately to treatment, with regression of necrotic lesions evident on magnetic resonance images, while none of the patients receiving the placebo showed a response. The results were striking, and all of the patients who switched from placebo showed a response to bevacizumab as well. So far, responses have persisted over 6 months even after the end of bevacizumab treatment. Side effects seen in the trial so far included venous thromboembolism in one patient, small vessel thrombosis in two patients, and a large venous sinus thrombosis in one patient. Dr. Levin is unsure whether the side effects were caused by therapy or the radiation necrosis itself. “We’re also not absolutely sure what is causing the positive effects against the radiation necrosis,” he said. “We presume it’s related to the release of cytokines like VEGF, since bevacizumab is very specific and only reduces VEGF levels. We think aberrant production of VEGF is involved with radiation necrosis of the brain, and the fact that even short treatment with bevacizumab seems to turn off the cycle of radiation damage further confirms the central role of VEGF in the process.” The multidisciplinary research team has also postulated that radiation therapy damages astrocytes, a cell type involved in various brain functions, and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. “It gets to be a very vicious cycle,” Dr. Levin said. “The question is, is that all that’s going on?” Dr. Levin hopes that the answers to that question and others may lead to preventive measures against radiation necrosis, beyond what is already done to control the development of radiation itself. Perhaps bevacizumab can be given in low doses before radiation or intermittently afterward to reduce VEGF levels and protect the brain from abnormally high levels of the protein. He hopes such approaches can be tested in future studies. “Just the fact that bevacizumab works has helped us understand so much more about what happens in radiation necrosis,” he said. “Everything we’ve tried up until now has been a brick wall.” Source: OncoLog, May 2009, Vol. 54, No. 5 Visualizing the effects of Avastin (bevacizumab) http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/pop.html

How do we find a good, relevant doctor for long-term survivors?

royrada — Fri, 26 Aug 2022 01:46:09 +0000

Long-term survivors with significant adverse effects of cancer treatment are an increasingly large population. However, no specialty addresses this problem and patients are often misunderstood. How do you find you caregivers? I moved to Orlando last month having had excellent caregivers elsewhere but have not been able to find anyone in Orlando. I was treated for head-neck cancer 20 years ago with 70 grays of radiation and am now dying from the radiation adverse effects. My preferred method for trying to find a good, relevant doctor is to do a search of the medical literature for papers published on my radiation adverse effects by people in my geographic area (PubMed makes such a search easy to implement). That literature search method has failed me in this case. I also visited the largest cancer institutes in the city and talked with numerous staff about pointers to caregivers without success; in short the oncologists treat cancer and are usually uninterested when the patient is cancer-free and is many years post-treatment, although the patient's problems are due to the cancer treatment. I've had some email exchanges with faculty in Orlando and in my previous states, but they point me to the major cancer centers which are 100+ miles from my home (Moffett in Tampa, Shands in Gainesville, or Univ Miami). In my previous states my care came from faculty at medical schools and that would be my preference again, but the only medical school in the Orlando area is inadequate. My next thought was to go to the online patient population online. I was once active first in the ACOR neck cancer group and then the ACOR long-term survivor group, but those groups are no longer active at ACOR. I phoned the American Cancer Society, but the phone answerers were not able to help. What do you suggest a person do to find good, relevant care?

Head and neck radiation side effects

Jddisalvo — Sun, 25 Oct 2015 11:31:26 +0000

Hi my name is Justin and I am 30 years old. I was diagnosed with stage 1 nasopharyngeal carcinoma in August 2015. I completed 35 treatments of radiation therapy and 3 cisplatum chemotherapy treatments. My last day of these treatments was October 22nd.

I am looking for relief and information and I hope that somebody can help me. I am truly desperate for some support with my side effects. I have read so much information on the Internet and talked to my team of doctors, but I really can't find any real relief from my symptoms. I don't have the best doctors, and they say that there is nothing j can do about my side effects.

I won't bore you with the pain I've already gone through, but if you want to know more, I'll be more than happy to tell you my story.

My major problems my salivary glands and my sore throat. My salivary grands aren't producing enough saliva and my throat and mouth are covered in thick mucus all of the time. Due to my side effects, I wake up every hour and choke, which is extremely painful due to my sore throat.

I'm taking hydromorphone and saligen and omaperazal as far as medications. I've had a peg tube since my fourth week of treatment. I've read and practiced many of the remedies, tried magic mouthwash and carafate solution. Nothing seems to work successfully, which is why I say that I am desperate for relief and information.

Here's are a list of questions I would like to ask somebody who has done my treatment in the past:

How long did it take until the sore throat started to subside after treatment was over?

How long until the salivary glands started to get better after ending treatment?

How long until eating was starting to get better?

Is there anything you would truly recommend to relieve the pain until side effects start to get better?

Please help me with any information. Even if you don't feel like it is important enough, I don't mind any extra information. I'm at the point where my quality of life has been diminished. I've had to quit my job, I'm in pain every single day and I really hate living right now. The mornings and night are the worse because that's when the side effects are at the pinnacle. I wake up, gag and choke, try to feed myself through the tube and throw up. That has been my life since week 5 of treatment. It's extremely depressing to think that there is nothing I can do to help myself. I have been taking care of myself since I've been 18 years old and always figures things out for myself. To try so many things and do so much research with no help is so very hard on me. Thanks for your time.

Justin

New Life Threatening Disease From Radiation

kat2013 — Thu, 30 May 2019 19:39:30 +0000

Hi everyone. I am trying to find people who were treated for cancer with chemo and radiation and went into remission....then developed a new issue from that treatment. In my case, the radiation fried my bladder, and I had to have a radical cysectomy. This led to me having to have stents placed to keep the ueters open. Sadly, these stents are bacteria magnets, and I have CVID (immune system trouble).....so I constantly have UTIs and kidney infections. So many that now most antibiotics do not work, and all this has led to stage 4 kidney disease. I will likely need kidneys removed and dialysis (sp?) soon. I REALLY need someone to talk to that has exchanged one deadly disease for another like me lol. I am doing antibody infusions now to try to stegthen my immune system and hopefully lessen the frequency of these infections. It is very scary knowing soonno antibiotic will work. Anyway, I hope I find someone who knows what I am talking about. Most people have never even heard of the type of cancer I had (even some doctors)....so finding people that can relate isn't easy. It's pretty rare. Hope to hear from someone soon

Effects of RAI (I-131)

Melo0576 — Sat, 06 Apr 2019 10:54:27 +0000

I had a total thyroidectomy in 2018 followed up with radioactive iodine (radiation in a pill) 2 months after. Now, 6 months later I’m still feeling side effects that were allegedly suppose to be “temporary.” My saliva glands swelled and it’s so painful and gets worse when I chew. My nose has a permanent nasal drip and hurts. The dry eye is unbelievable. I understand side effects 6 weeks later, but 6 months later and I lose my taste buds!? Anyone else experience this? Does it ever stop? I also wish doctors would stop saying “it’s the best cancer to have“ because it’s misleading. At my last ultrasound they found 3 remaining nodules that can’t be removed because it’s in the tissue bed of neck. They are microscopic (Ranging from .3 and .5 and I guess I don’t have to worry because my thyroglobulin levels are really low (.2). Hopefully I’ll get feedback. I was curious about experiences of others. Please share! @—)—

Traitements de chimiothérapie et hernies discales

Mela8 — Mon, 14 Mar 2022 16:43:50 +0000

Bonjour,

Je cherche à savoir si je suis la seule personne à avoir eu des hernies discales suite à des traitements de chimiothérapie ? J'ai eu un lymphome de Burkitt à l'âge de 15 ans en 1993, j'ai eu pour 8 mois de traitements de chimio dont 2 directements dans la colonne vertébrale. Je ne me rappelle plus trop des noms des médicaments mais il y avait entre autre : Adriamicyn, Decadron, Prednisone, Vincristine, Metotrexate. J'ai eu ma première hernie discale à la zone d'injection de la chimiothérapie et j'en ai eu environ 11 à 12 suivantes, réparties dans tout le dos. Cela en plus de la fatigue qui n'est jamais disparue complètement, je ne suis pas aussi endurante, des douleurs musculaires chronique, des problèmes d'équilibre et des mains et pieds gelés presque constamment. J'ai aussi eu des céllules pré-cancereuse au col de l'utérus, des polypes à la vessie et aux intestins. Chaque fois que j'en parle à un médecin, je me fais dire que ça n'a aucun lien, suis-je la seule à être si mal chanceuse ou est-ce simplement que les scientifiques ne se sont jamais posés la question ?

J'espère que vous comprendrez mon texte, je suis une Canadienne du Québec et j'ai écrit le tout en français.

Merci beaucoup !

Radiation Proctitis

lakeheadguy — Thu, 17 Feb 2022 02:35:57 +0000

Information wanted re uncontrollable anal discharge with putrid odor. I am logging my eating habits monitoring what foods are related to odor in order to help control the smell. I am 6 years post radiation with psa .06. PSA at treatment was 14. Any information appreciated

Stem cell treatment

vab — Mon, 31 Jan 2022 00:01:54 +0000

Who has gone through the stem cell process?

Post Carcinoma Nasopharyngeal Treatment Problems +8 years

weddei — Mon, 13 Dec 2021 19:21:49 +0000

Hello everyone, I hope you are all doing well.

I joined this forum a little late, well maybe not "a little".

My name is Mawadda, I'm 27 and I was diagnosed with carcinoma nasopharyngeal over eight years ago. I have been cancer-free since 2014 (Thank God) but I am still struggling with a lot of health issues that I am afraid will never go away.

I have had 32 radiation sessions to the head and neck area and 6 chemotherapy sessions.

I am struggling the most with my sinuses (excess mucus and sputum), my eyes (very dry, no tears) my ears (hearing problems and reoccurring ear infections), continuous teeth decay (not enough saliva production) and recently my dentist told me that I will start losing teeth in the next 5-10 years.

I do my best to remain healthy, I watch my diet, I exercise, I brush my teeth and floss, I use natural remedies to clear up my sinuses but nothing seems to work.

Yes, I am 1000000 times better than when I was doing the treatment, but I am just wondering if I will have to live with these problems for the rest of my life.

Will the people who were in similar situations or had similar diagnoses and treatments share their experiences with me? I would really appreciate it.

Thank you all.

Anti-cancer diet

I only — Tue, 30 Nov 2021 22:24:07 +0000

There is a diet, thought up by a doctor, that has saved the lives of many people I know who had different types of cancer. Most of these people are living a cancer-free life today. One person survives today and lives a long and healthy life after having been on dialysis.

The diet is based on the principle that cancer cells die when they have nothing to feed off. Foods and additives that cancer feeds on, like salt, sugar, red meat, alcohol, and other processed foods, are forbidden. The produce works best if it is served fresh or in a smoothie. Fruits can be blended with skim milk. I also highly suggest that the produce, milk and meat used be organic because GMOs contain harmful chemicals. It is important to remember that the diet will not work unless it is strictly followed.

clean water

spinach (organic and fresh)

radishes

beets

asparagus

green beans

watercress

celery

broccoli

parsley

chicken (only white meat)

salmon (baked only)

cranberries

blueberries

strawberries

green apples

pineapples

kiwi

mangoes

orange juice from squeezed oranges

skim milk

joint and bone pain following Taxol

mary greuling — Tue, 01 May 2018 01:11:44 +0000

pelvic radiation, after effects

blujae — Mon, 05 Jan 2004 15:31:34 +0000

Has anyone had radiation to the pelvis region and suffered long term side effects? I have been done with radiation since april and cant seem to feel better. Is it just me or what?