I'm still here...
I'm still on the planet... I haven't posted for a long time, but I do read the posts from time to time. I had labs the 5th and CT scan the 6th - good results, however since those tests I've been dealing with diarrhea/loose stools for almost two weeks now. No fever, no nausea, no vomitting. Stool consistency varies (nice to have somewhere to discuss out poop) - mushy, brown snot like at times or crumbly looking - not formed. I don't feel sick. Sometimes after I eat, it's straight to the bathroom I go. I've had these issues before, but they haven't lasted this long. Reminds me of the time I was going through treatment 4 years ago. I now wear a disposable brief because I never know when it's going to hit or slip out. It's frustrating and annoying. I was taking Imodium for awhile.
I had an exam under anesthesia in May, with biopsy and dilation and that was fine.
My colorectal dr is out of the country until next month and I have an appt the 7th, but am going to call and see if I can get in a few days earlier. So I went to see my PCP the 10th. She thought it was a virus or food irritation. Had lab work for thyroid and that was normal. Also had stool test, but haven't received results yet. She gave me a rx for lomotil since I told her that was what I took during treatment. I asked her if this could be related to radiation, but she didn't think so because it would have shown up sooner - yeah right. They don't know that side effects can appear years later.
I did eat at Red Lobster the day before this hit.
I've lost weight and don't have pounds to loose.
So I guess I'll eat what I want and if I poop, I poop.
My poor rear end doesn't like all these trips to the bathroom. Sitz bath is still my friend. Have been using diaper cream and Aquaphor.
I'm thankful to still be here!
Ann
Comments
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Hi Ann!
I'm glad you posted an update and that you had good results on your recent scan and lab work.
Okay, let's talk poop. I can totally relate to the loose stools and consistency that you describe (although in one of my latest posts, I compared mine to peanut butter). If you notice your stools resembling that of peanut butter, both in color and greasiness, and that they float, then you may be having some malabsorption issues, especially if this is occurring after eating something with high fat content. I am not a doctor, of course, but since my own situation has gone this direction, I have done lots of research on the subject and have concluded that my intestines just do not absorb certain things like they should, fats being one of those things. I am now taking Imodium, one tablet daily, which has helped with accidental output and has helped firm up my stools and reduced frequency/urgency.
I would tend to disagree with your PCP's opinion that this is not related to the radiation treatment. I would tend to believe that it has everything to do with the treatment. One clue that you may be having some malabsorption issues is that you ate at Red Lobster prior to this episode. If you ate anything that was fried or loaded with butter, as many of their dishes are, then that could explain the issues you had the following day. Like I said, I'm not a doctor, so maybe I'm off base, but I do know that radiation proctitis and malabsorption can be late effects of the treatment--and I'm talking years later.
After dealing with my poop issues, I hear you loud and clear about the sore rear end. Just about the time things get better, they get worse again.
Hang in there and know that I understand what you are dealing with and I'm sure others do too. I guess it is the price we pay for still being here! Take care.
Hugs!
Martha
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balneol will help
ann, sorry you are dealing with this.....go buy some balneol lotion..its over the counter.....put some on the area when you first get up in the am or when you think you are going to go to bathroom...and use it after you have bm.... it helps with the slide and protects the tissue.... it also cleans the area with much friction...../
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Radiationmp327 said:Hi Ann!
I'm glad you posted an update and that you had good results on your recent scan and lab work.
Okay, let's talk poop. I can totally relate to the loose stools and consistency that you describe (although in one of my latest posts, I compared mine to peanut butter). If you notice your stools resembling that of peanut butter, both in color and greasiness, and that they float, then you may be having some malabsorption issues, especially if this is occurring after eating something with high fat content. I am not a doctor, of course, but since my own situation has gone this direction, I have done lots of research on the subject and have concluded that my intestines just do not absorb certain things like they should, fats being one of those things. I am now taking Imodium, one tablet daily, which has helped with accidental output and has helped firm up my stools and reduced frequency/urgency.
I would tend to disagree with your PCP's opinion that this is not related to the radiation treatment. I would tend to believe that it has everything to do with the treatment. One clue that you may be having some malabsorption issues is that you ate at Red Lobster prior to this episode. If you ate anything that was fried or loaded with butter, as many of their dishes are, then that could explain the issues you had the following day. Like I said, I'm not a doctor, so maybe I'm off base, but I do know that radiation proctitis and malabsorption can be late effects of the treatment--and I'm talking years later.
After dealing with my poop issues, I hear you loud and clear about the sore rear end. Just about the time things get better, they get worse again.
Hang in there and know that I understand what you are dealing with and I'm sure others do too. I guess it is the price we pay for still being here! Take care.
Hugs!
Martha
I agree, radiation has everything to do with this! I'm pretty sure my CR dr told me I had radiation proctitis a couple of years ago. My CT scan showed "mild thickening of the rectosigmoid, possibly related to prior radiation". The best part - "no evidence for metastic disease".
Clinical history on CT scan report states malignant neoplasm of the rectum. I've asked my CR dr numerous times if I had anal or rectal cancer and he said anal. My oncologist is the one who orders the CT scans. I have another one next year with lab work.
The Lomitol is helping (knock on wood). I'm supposed to take it 4 times a day, but have only been taking it twice a day. Why take it more than necessary?
I told my oncologist about what was going on when I went to see him for test results. He felt my belly and said it wasn't hard and more or less take Imodium. He knew I was going to see my CR dr. He was pleased with the test results.
I just hope this poop isn't the new "normal". Also hoping this isn't anything serious. Even after a BM, it still feels like there's something there stuck in the chute. I did have an anal abscess when cancer was discovered over 4 years ago. I'm hoping my CR dr can figure out what's going on. I'm sure he'll want to do a colonoscopy - last one was two years ago.
And Martha, I'm sorry you're dealing with kidney issues. Yep, things go smoothly and then wham!
Take care!
Hugs!
Ann
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Balneolsephie said:balneol will help
ann, sorry you are dealing with this.....go buy some balneol lotion..its over the counter.....put some on the area when you first get up in the am or when you think you are going to go to bathroom...and use it after you have bm.... it helps with the slide and protects the tissue.... it also cleans the area with much friction...../
Thanks for the suggestion! My rear end is feeling better thanks to the Lomotil. I'll get some Balneol to have on hand just in case. I think I might have used it a few years ago and forgot about it so thanks for the reminder!
Ann
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Hi AnnAZANNIE said:Radiation
I agree, radiation has everything to do with this! I'm pretty sure my CR dr told me I had radiation proctitis a couple of years ago. My CT scan showed "mild thickening of the rectosigmoid, possibly related to prior radiation". The best part - "no evidence for metastic disease".
Clinical history on CT scan report states malignant neoplasm of the rectum. I've asked my CR dr numerous times if I had anal or rectal cancer and he said anal. My oncologist is the one who orders the CT scans. I have another one next year with lab work.
The Lomitol is helping (knock on wood). I'm supposed to take it 4 times a day, but have only been taking it twice a day. Why take it more than necessary?
I told my oncologist about what was going on when I went to see him for test results. He felt my belly and said it wasn't hard and more or less take Imodium. He knew I was going to see my CR dr. He was pleased with the test results.
I just hope this poop isn't the new "normal". Also hoping this isn't anything serious. Even after a BM, it still feels like there's something there stuck in the chute. I did have an anal abscess when cancer was discovered over 4 years ago. I'm hoping my CR dr can figure out what's going on. I'm sure he'll want to do a colonoscopy - last one was two years ago.
And Martha, I'm sorry you're dealing with kidney issues. Yep, things go smoothly and then wham!
Take care!
Hugs!
Ann
I'm glad to see your response. If you continue to have more bowel issues, I would suggest keeping a food journal to see if you can track down foods that may be causing you problems. I'm sure two things that mess with my bowels are greasy foods and alcohol. I go out every weekend to a Mexican restaurant and I eat chips and have a margarita or other type of alcohol. The next morning, I am pretty much guaranteed to have some short-term issues.
I am finding that taking just one Imodium tablet daily as a routine has been very helpful with the bowel issues. I hope it will do the same for you.
Take care and keep us updated. Have a very Happy Thanksgiving!
Martha
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Issuesmp327 said:Hi Ann!
I'm glad you posted an update and that you had good results on your recent scan and lab work.
Okay, let's talk poop. I can totally relate to the loose stools and consistency that you describe (although in one of my latest posts, I compared mine to peanut butter). If you notice your stools resembling that of peanut butter, both in color and greasiness, and that they float, then you may be having some malabsorption issues, especially if this is occurring after eating something with high fat content. I am not a doctor, of course, but since my own situation has gone this direction, I have done lots of research on the subject and have concluded that my intestines just do not absorb certain things like they should, fats being one of those things. I am now taking Imodium, one tablet daily, which has helped with accidental output and has helped firm up my stools and reduced frequency/urgency.
I would tend to disagree with your PCP's opinion that this is not related to the radiation treatment. I would tend to believe that it has everything to do with the treatment. One clue that you may be having some malabsorption issues is that you ate at Red Lobster prior to this episode. If you ate anything that was fried or loaded with butter, as many of their dishes are, then that could explain the issues you had the following day. Like I said, I'm not a doctor, so maybe I'm off base, but I do know that radiation proctitis and malabsorption can be late effects of the treatment--and I'm talking years later.
After dealing with my poop issues, I hear you loud and clear about the sore rear end. Just about the time things get better, they get worse again.
Hang in there and know that I understand what you are dealing with and I'm sure others do too. I guess it is the price we pay for still being here! Take care.
Hugs!
Martha
I started having bowel issues last year four years out. They don't think it is related to treatment. I wish they would read this forum. But it beats the alternative, I am still here. I really wish Dr's would read our stuff.
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nonicholnonichol said:Issues
I started having bowel issues last year four years out. They don't think it is related to treatment. I wish they would read this forum. But it beats the alternative, I am still here. I really wish Dr's would read our stuff.
Hi! It's good to see you back here and I hope that, other than the bowel issues, you are doing well.
After having bowel/malabsorption issues myself that didn't really present until almost 7 years out of treatment, I am making a suggestion to anyone who is having such problems post-treatment. There are some very good websites that explain radiation proctitis, radiation enteritis and malabsorption related to radiation treatment. If anyone goes to their doctor for their bowel issues, print out some of this information to take along. I think it is woefully obvious that some doctors do not have a good understanding of these issues or many of the others that people like us experience. The attitude among some seems to be that radiation got rid of our cancer and we should be just fine now. They really don't want to address the possible long-term side effects and the reasons for such. Another suggestion I might make is seeing a gastroenterologist, as colorectal doctors, oncologists, and PCP's may not be as educated with these conditions. My radiation oncologist probably has good knowledge of all of this, but he dismissed me from his care after a couple of years post-treatment.
Last March, I spoke at the International Anal Neoplasia Society's conference in Atlanta, at which time I made a point of addressing these long-term issues. Getting treatment for anal cancer is not just about getting rid of the disease but also giving the patient the best quality of life afterwards.
I wish you and everyone else on this site the best as we all move forward. May all have a very Happy Thanksgiving.
Martha
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Interesting Article About Pelvic Radiation DiseaseAZANNIE said:Balneol
Thanks for the suggestion! My rear end is feeling better thanks to the Lomotil. I'll get some Balneol to have on hand just in case. I think I might have used it a few years ago and forgot about it so thanks for the reminder!
Ann
This is an interesting article from the website Oncology Nurse Advisor.
Radiotherapy side effects: Understanding pelvic radiation disease
Radiotherapy side effects: Understanding pelvic radiation diseaseAs many as 50% of patients undergoing pelvic radiation therapy define their quality of life as degraded due to subsequent chronic changes to their bowel function, such as diarrhea or fecal incontinence. These late effects are common—in some cases, even life-threatening—and clearly significant for patients. But frequently, they go clinically undetected or remain untreated.
This lack of posttreatment symptom management is due, in part, to a widespread use of symptoms-driven diagnoses (eg, chronic proctitis, enteritis, cystitis) rather than making a cause-describing diagnosis. Persistent inflammation rarely underlies late radiation toxicities, leading some researchers to reject the use of terms denoting inflammatory conditions to describe late radiotherapy-associated toxicities.
EVOLVING CLINICAL PERCEPTION
Radiotherapy-associated chronic toxicity is frequently seen as an assemblage of indistinct complaints or symptoms, rather than a definable disease. Its effects are "rarely accurately measured or fully appreciated," reported an international team of researchers led by H. Jervoise N. Andreyev, PhD. Late toxicities can be difficult to differentiate from other disorders.
For example, symptom-based (eg, rectal bleeding) toxicity checklists or scales do not measure the duration of symptoms, which is an important consideration when attributing symptoms to prior radiotherapy (eg, rectal bleeding is attributable to radiotherapy only if the anterior rectal wall was irradiated; in up to 33% of cases, postradiotherapy rectal bleeding is due to causes other than the radiotherapy).
Treatment success is typically defined in terms of tumor control or eradication, rather than the long-term well-being of the patient. However, chronic toxicities can arise months or even years after radiotherapy is completed, so oncology treatment teams may never become aware of them, and other clinicians may not attribute them to a history of pelvic radiotherapy.
Experts have made a concerted effort to move away from describing chronic pelvic radiotherapy-associated toxicities as individual symptoms, recognizing them instead as manifestations of a single phenomenon referred to as pelvic radiation disease. Andreyev's team defined pelvic radiation disease as transient or longer-term problems, ranging from mild to very severe, that arise in noncancerous tissues as a result of radiation treatments to tumors of pelvic origin.
DIVERSE SYMPTOMS
The development of new symptoms affecting the bowel, urinary tract, sex organs, bones, or skin during or after radiotherapy may be pelvic radiation disease, note Andreyev and colleagues. Postradiotherapy rectal bleeding should prompt assessment of other potential manifestations of pelvic radiation disease, such as urinary or fecal incontinence.
The molecular and physiologic mechanisms leading to pelvic radiation disease are complex, and symptoms related to gastrointestinal and urinary tract dysfunction can be diverse, frequently arising from separate lesions within different parts of the GI tract. Radiotherapy can cause ulceration, acute inflammation, cell death, and edema in healthy nontarget tissues, which can be investigated with flexible rectosigmoidoscopy. These injuries can also lead to chronic ischemia and fibrosis, which are predominantly submucosal changes.
Objective clinical findings do not always match patient-reported symptoms. Symptoms can include such problems as anal ulceration and bleeding, bloating and constipation, fatigue and lethargy, flatulence, hemorrhoids, insomnia, mucus discharge or steatorrhea (elevated levels of fat in feces caused by diminished intestinal absorption), nausea, abdominal or anal pain, and even the loss of a sense of taste. Late rectal bleeding appears to be a direct, dose-dependent side effect of radiation therapy, whereas other chronic toxicities of the urinary tract and intestinal mucosa, including incontinence, appear to be long-term exacerbations of acute toxicities (sometimes referred to as consequential late effects) and are independent of radiation dose. Bowel obstruction, fistulas, and secondary cancers triggered by radiation to nontarget tissues represent potentially life-threatening late toxicities stemming from pelvic radiotherapy.
The evidence base for pelvic radiation disease risks and treatments remains limited; few clinical trials or prospective studies of pelvic radiotherapy have been published. Irradiation of nontarget, healthy tissues ultimately underlies pelvic radiation disease; however, total and per-fraction radiation doses, the volume of irradiated tissues, and concomitant administration of chemotherapy or biologic agents all appear to modulate risk.
RISK ASSESSMENT
Few data are yet available about how widespread use of radiotherapeutic modalities with improved targeting, such as intensity-modulated radiotherapy (IMRT), will affect the incidence of pelvic radiation disease. Early data suggest IMRT and 3D conformal radiotherapy are associated with late GI toxicity rates of 6% and 15%, respectively, among patients treated for prostate cancer; 3.6% and 3.0%, respectively, among patients treated for cervical cancer; 7% and 3%, respectively, among patients treated for anal tumors; and 9.5% and 20%, respectively, among rectal cancer patients also undergoing neoadjuvant chemotherapy. In general, chemoradiotherapy and radiation dose intensification can improve tumor control rates, but these also increase the risk of acute and chronic toxicities.
Comorbidities and other patient factors also modulate risk. For example, diabetes nearly doubles the risk of pelvic radiation disease 5 years after radiotherapy. Tobacco use, inflammatory bowel disease, scleroderma, or a history of pelvic or abdominal surgery also appear to increase the risk of pelvic radiation disease.
Detecting late toxicities following pelvic radiotherapy traditionally depends primarily on patients completing symptoms-based questionnaires, but these tools are problematic for several reasons. Questionnaire-based assessments cannot reliably distinguish symptoms that are radiotherapy-associated chronic toxicities from symptoms with other causes. Patients' definitions of symptoms such as diarrhea can vary, as well; furthermore, patients sometimes deny stigmatizing conditions such as fecal incontinence. Patients should be educated before radiotherapy is undertaken and after its completion about the risks of late toxicity and that these effects may mimic other disorders.
"Patients may not be their own best advocates," cautions Andreyev. They may deny symptoms they have taken drastic measures to prevent to avoid social embarrassment. For example, patients experiencing debilitating urgency of defecation may prevent fecal incontinence by never leaving the house; thus staying, at most, only a few seconds away from the bathroom, or not eating for many hours before they go out.
MANAGEMENT
Symptom management is based on gastroenterologic assessments and nurse-led patient needs assessments. Some patients may need a referral to a urology or gastroenterology specialist, hyperbaric oxygen services, a pain management team, or psychological support.
In cases of extreme bowel obstruction, surgery may be necessary despite the fact that fibrotic scarring leaves patients with pelvic radiation disease at higher risk of complications from surgery. Endoscopic thermal coagulation therapy using argon plasma, laser, or heater probe can reduce pelvic radiation disease-associated bleeding; however, these treatments may cause pain, strictures, fistula, and perforation. Endoscopic formalin or cryoablation are also frequently used for bleeding, but these too have a risk of perforation, rectal ulcers, and pain.
The term radiation proctitis implies that late pelvic radiotherapy toxicities are driven by inflammation, and this sometimes leads to inappropriate treatments with corticosteroids or other antiinflammatory agents, such as 5-aminosalicylic acids. These drugs do not offer any benefits to patients with pelvic radiation disease, according to a 2002 systematic review of clinical trial data.
Opiate antagonists can reduce diarrhea in these patients and bleeding can be ameliorated with a 4-week course of oral metronidazole or sucralfate enema treatments. Fecal incontinence can be more challenging, although there is limited evidence that phenylephrine gel may help. One very small prospective, controlled study of 19 patients found that fecal incontinence declined among patients who received oral vitamin A (retinol palmitate, 10,000 IU/d for 90 days).
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AnnAZANNIE said:Balneol
Thanks for the suggestion! My rear end is feeling better thanks to the Lomotil. I'll get some Balneol to have on hand just in case. I think I might have used it a few years ago and forgot about it so thanks for the reminder!
Ann
I am happy to see your post and hear that your scans are good. However, I'm not happy that you are having post radiation issues. I hope that your doctors are able to help you manage them effectively.
Wishing you the best,
Liz
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Marthamp327 said:Interesting Article About Pelvic Radiation Disease
This is an interesting article from the website Oncology Nurse Advisor.
Radiotherapy side effects: Understanding pelvic radiation disease
Radiotherapy side effects: Understanding pelvic radiation diseaseAs many as 50% of patients undergoing pelvic radiation therapy define their quality of life as degraded due to subsequent chronic changes to their bowel function, such as diarrhea or fecal incontinence. These late effects are common—in some cases, even life-threatening—and clearly significant for patients. But frequently, they go clinically undetected or remain untreated.
This lack of posttreatment symptom management is due, in part, to a widespread use of symptoms-driven diagnoses (eg, chronic proctitis, enteritis, cystitis) rather than making a cause-describing diagnosis. Persistent inflammation rarely underlies late radiation toxicities, leading some researchers to reject the use of terms denoting inflammatory conditions to describe late radiotherapy-associated toxicities.
EVOLVING CLINICAL PERCEPTION
Radiotherapy-associated chronic toxicity is frequently seen as an assemblage of indistinct complaints or symptoms, rather than a definable disease. Its effects are "rarely accurately measured or fully appreciated," reported an international team of researchers led by H. Jervoise N. Andreyev, PhD. Late toxicities can be difficult to differentiate from other disorders.
For example, symptom-based (eg, rectal bleeding) toxicity checklists or scales do not measure the duration of symptoms, which is an important consideration when attributing symptoms to prior radiotherapy (eg, rectal bleeding is attributable to radiotherapy only if the anterior rectal wall was irradiated; in up to 33% of cases, postradiotherapy rectal bleeding is due to causes other than the radiotherapy).
Treatment success is typically defined in terms of tumor control or eradication, rather than the long-term well-being of the patient. However, chronic toxicities can arise months or even years after radiotherapy is completed, so oncology treatment teams may never become aware of them, and other clinicians may not attribute them to a history of pelvic radiotherapy.
Experts have made a concerted effort to move away from describing chronic pelvic radiotherapy-associated toxicities as individual symptoms, recognizing them instead as manifestations of a single phenomenon referred to as pelvic radiation disease. Andreyev's team defined pelvic radiation disease as transient or longer-term problems, ranging from mild to very severe, that arise in noncancerous tissues as a result of radiation treatments to tumors of pelvic origin.
DIVERSE SYMPTOMS
The development of new symptoms affecting the bowel, urinary tract, sex organs, bones, or skin during or after radiotherapy may be pelvic radiation disease, note Andreyev and colleagues. Postradiotherapy rectal bleeding should prompt assessment of other potential manifestations of pelvic radiation disease, such as urinary or fecal incontinence.
The molecular and physiologic mechanisms leading to pelvic radiation disease are complex, and symptoms related to gastrointestinal and urinary tract dysfunction can be diverse, frequently arising from separate lesions within different parts of the GI tract. Radiotherapy can cause ulceration, acute inflammation, cell death, and edema in healthy nontarget tissues, which can be investigated with flexible rectosigmoidoscopy. These injuries can also lead to chronic ischemia and fibrosis, which are predominantly submucosal changes.
Objective clinical findings do not always match patient-reported symptoms. Symptoms can include such problems as anal ulceration and bleeding, bloating and constipation, fatigue and lethargy, flatulence, hemorrhoids, insomnia, mucus discharge or steatorrhea (elevated levels of fat in feces caused by diminished intestinal absorption), nausea, abdominal or anal pain, and even the loss of a sense of taste. Late rectal bleeding appears to be a direct, dose-dependent side effect of radiation therapy, whereas other chronic toxicities of the urinary tract and intestinal mucosa, including incontinence, appear to be long-term exacerbations of acute toxicities (sometimes referred to as consequential late effects) and are independent of radiation dose. Bowel obstruction, fistulas, and secondary cancers triggered by radiation to nontarget tissues represent potentially life-threatening late toxicities stemming from pelvic radiotherapy.
The evidence base for pelvic radiation disease risks and treatments remains limited; few clinical trials or prospective studies of pelvic radiotherapy have been published. Irradiation of nontarget, healthy tissues ultimately underlies pelvic radiation disease; however, total and per-fraction radiation doses, the volume of irradiated tissues, and concomitant administration of chemotherapy or biologic agents all appear to modulate risk.
RISK ASSESSMENT
Few data are yet available about how widespread use of radiotherapeutic modalities with improved targeting, such as intensity-modulated radiotherapy (IMRT), will affect the incidence of pelvic radiation disease. Early data suggest IMRT and 3D conformal radiotherapy are associated with late GI toxicity rates of 6% and 15%, respectively, among patients treated for prostate cancer; 3.6% and 3.0%, respectively, among patients treated for cervical cancer; 7% and 3%, respectively, among patients treated for anal tumors; and 9.5% and 20%, respectively, among rectal cancer patients also undergoing neoadjuvant chemotherapy. In general, chemoradiotherapy and radiation dose intensification can improve tumor control rates, but these also increase the risk of acute and chronic toxicities.
Comorbidities and other patient factors also modulate risk. For example, diabetes nearly doubles the risk of pelvic radiation disease 5 years after radiotherapy. Tobacco use, inflammatory bowel disease, scleroderma, or a history of pelvic or abdominal surgery also appear to increase the risk of pelvic radiation disease.
Detecting late toxicities following pelvic radiotherapy traditionally depends primarily on patients completing symptoms-based questionnaires, but these tools are problematic for several reasons. Questionnaire-based assessments cannot reliably distinguish symptoms that are radiotherapy-associated chronic toxicities from symptoms with other causes. Patients' definitions of symptoms such as diarrhea can vary, as well; furthermore, patients sometimes deny stigmatizing conditions such as fecal incontinence. Patients should be educated before radiotherapy is undertaken and after its completion about the risks of late toxicity and that these effects may mimic other disorders.
"Patients may not be their own best advocates," cautions Andreyev. They may deny symptoms they have taken drastic measures to prevent to avoid social embarrassment. For example, patients experiencing debilitating urgency of defecation may prevent fecal incontinence by never leaving the house; thus staying, at most, only a few seconds away from the bathroom, or not eating for many hours before they go out.
MANAGEMENT
Symptom management is based on gastroenterologic assessments and nurse-led patient needs assessments. Some patients may need a referral to a urology or gastroenterology specialist, hyperbaric oxygen services, a pain management team, or psychological support.
In cases of extreme bowel obstruction, surgery may be necessary despite the fact that fibrotic scarring leaves patients with pelvic radiation disease at higher risk of complications from surgery. Endoscopic thermal coagulation therapy using argon plasma, laser, or heater probe can reduce pelvic radiation disease-associated bleeding; however, these treatments may cause pain, strictures, fistula, and perforation. Endoscopic formalin or cryoablation are also frequently used for bleeding, but these too have a risk of perforation, rectal ulcers, and pain.
The term radiation proctitis implies that late pelvic radiotherapy toxicities are driven by inflammation, and this sometimes leads to inappropriate treatments with corticosteroids or other antiinflammatory agents, such as 5-aminosalicylic acids. These drugs do not offer any benefits to patients with pelvic radiation disease, according to a 2002 systematic review of clinical trial data.
Opiate antagonists can reduce diarrhea in these patients and bleeding can be ameliorated with a 4-week course of oral metronidazole or sucralfate enema treatments. Fecal incontinence can be more challenging, although there is limited evidence that phenylephrine gel may help. One very small prospective, controlled study of 19 patients found that fecal incontinence declined among patients who received oral vitamin A (retinol palmitate, 10,000 IU/d for 90 days).
You contiue to amaze me with your knowledge and resources! You would be a great doctor in my opinion! I'm sorry to hear about your kidney issues and I pray that your medical team will find a way to make it better for you. It's been such a confusing journey for you and I'm sure that you may feel like you don't know who to believe has the right info.
The article on post radiation impacts was very informative and scary at the same time. I guess I have been lucky so far since my issues have been limited to arthritis in my lower spine resulting from the radiation.
The price we pay to fight this darn disease.
Wishing you the best my friend.
Hugs,
Liz
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Hi Lizlizdeli said:Martha
You contiue to amaze me with your knowledge and resources! You would be a great doctor in my opinion! I'm sorry to hear about your kidney issues and I pray that your medical team will find a way to make it better for you. It's been such a confusing journey for you and I'm sure that you may feel like you don't know who to believe has the right info.
The article on post radiation impacts was very informative and scary at the same time. I guess I have been lucky so far since my issues have been limited to arthritis in my lower spine resulting from the radiation.
The price we pay to fight this darn disease.
Wishing you the best my friend.
Hugs,
Liz
Thank you so much. I hope you and others find the above information helpful. As for me being a great doctor, I think it's a little late for that at 62 years old, but I do appreciate your vote of confidence! I do have a thirst for knowledge, especially when the subject matter affects me personally and may also impact others on this and other sites. I don't think we can ever know too much about this disease or the after-effects of treatment.
Now I get to learn all about the kidneys--it's like taking another college course. lol! I have a ton of questions for the nephrologist, who I will see on December 4th. I am seriously considering seeking a 2nd. opinion, as so far, my internist and the first nephrologist I saw have made it sound like it's "cut and dried" that I have chronic kidney disease. based solely on the tests I've had so far. Since I feel great at this time, with no troubling symptoms of any kind, I guess I'm still not accepting that and it may take another doctor's opinion to finally convince me. It certainly won't do any harm to get another specialist's take on this. I also hope to learn a lot more by attending a seminar on kidney disease at a local dialysis center in a couple of weeks.
A good friend of mine called me yesterday to get an update on me. I jokingly told her that my goal in life is to have a disease that starts with each letter of the alphabet. I'm up to 3 now--only 23 more to go!
Thank you for your continuing support and friendship. It means a great deal to me. I hope you are doing well and I wish you and yours a very Happy Thanksgiving!
Martha
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Thanks
Martha,
Finally a name for it! I am seeing GI Dic now, he doesn't think it is related to treatment either!!!! But, I gotta say I am glad I am alive, . So, well just have to deal with embarrassing side effects. Hopefully, they can improve treaent over time. I do believe it is better than it use to be. I am glad you are still on here guiding and comforting people as our cancer is so rare. I married two years ago and my hubby just found out he has live cancer which spread to his ribs.
Norma
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Hmmnonichol said:Thanks
Martha,
Finally a name for it! I am seeing GI Dic now, he doesn't think it is related to treatment either!!!! But, I gotta say I am glad I am alive, . So, well just have to deal with embarrassing side effects. Hopefully, they can improve treaent over time. I do believe it is better than it use to be. I am glad you are still on here guiding and comforting people as our cancer is so rare. I married two years ago and my hubby just found out he has live cancer which spread to his ribs.
Norma
Doc not Dic haha
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Normanonichol said:Thanks
Martha,
Finally a name for it! I am seeing GI Dic now, he doesn't think it is related to treatment either!!!! But, I gotta say I am glad I am alive, . So, well just have to deal with embarrassing side effects. Hopefully, they can improve treaent over time. I do believe it is better than it use to be. I am glad you are still on here guiding and comforting people as our cancer is so rare. I married two years ago and my hubby just found out he has live cancer which spread to his ribs.
Norma
I don't know why some doctors refuse to believe that radiation causes so much damage to our insides. Yes, there is a name for it--Pelvic Radiation Disease. That's a very broad term and I think it probably covers most or all of the things that we experience after treatment that affects our digestion, intestinal tract, bladder and bowels.
I am so sorry to hear about your husband's cancer. I hope he is in the best care for this and that he is putting his all into this fight. I will keep both of you in my thoughts and prayers.
Martha
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thank you!mp327 said:Interesting Article About Pelvic Radiation Disease
This is an interesting article from the website Oncology Nurse Advisor.
Radiotherapy side effects: Understanding pelvic radiation disease
Radiotherapy side effects: Understanding pelvic radiation diseaseAs many as 50% of patients undergoing pelvic radiation therapy define their quality of life as degraded due to subsequent chronic changes to their bowel function, such as diarrhea or fecal incontinence. These late effects are common—in some cases, even life-threatening—and clearly significant for patients. But frequently, they go clinically undetected or remain untreated.
This lack of posttreatment symptom management is due, in part, to a widespread use of symptoms-driven diagnoses (eg, chronic proctitis, enteritis, cystitis) rather than making a cause-describing diagnosis. Persistent inflammation rarely underlies late radiation toxicities, leading some researchers to reject the use of terms denoting inflammatory conditions to describe late radiotherapy-associated toxicities.
EVOLVING CLINICAL PERCEPTION
Radiotherapy-associated chronic toxicity is frequently seen as an assemblage of indistinct complaints or symptoms, rather than a definable disease. Its effects are "rarely accurately measured or fully appreciated," reported an international team of researchers led by H. Jervoise N. Andreyev, PhD. Late toxicities can be difficult to differentiate from other disorders.
For example, symptom-based (eg, rectal bleeding) toxicity checklists or scales do not measure the duration of symptoms, which is an important consideration when attributing symptoms to prior radiotherapy (eg, rectal bleeding is attributable to radiotherapy only if the anterior rectal wall was irradiated; in up to 33% of cases, postradiotherapy rectal bleeding is due to causes other than the radiotherapy).
Treatment success is typically defined in terms of tumor control or eradication, rather than the long-term well-being of the patient. However, chronic toxicities can arise months or even years after radiotherapy is completed, so oncology treatment teams may never become aware of them, and other clinicians may not attribute them to a history of pelvic radiotherapy.
Experts have made a concerted effort to move away from describing chronic pelvic radiotherapy-associated toxicities as individual symptoms, recognizing them instead as manifestations of a single phenomenon referred to as pelvic radiation disease. Andreyev's team defined pelvic radiation disease as transient or longer-term problems, ranging from mild to very severe, that arise in noncancerous tissues as a result of radiation treatments to tumors of pelvic origin.
DIVERSE SYMPTOMS
The development of new symptoms affecting the bowel, urinary tract, sex organs, bones, or skin during or after radiotherapy may be pelvic radiation disease, note Andreyev and colleagues. Postradiotherapy rectal bleeding should prompt assessment of other potential manifestations of pelvic radiation disease, such as urinary or fecal incontinence.
The molecular and physiologic mechanisms leading to pelvic radiation disease are complex, and symptoms related to gastrointestinal and urinary tract dysfunction can be diverse, frequently arising from separate lesions within different parts of the GI tract. Radiotherapy can cause ulceration, acute inflammation, cell death, and edema in healthy nontarget tissues, which can be investigated with flexible rectosigmoidoscopy. These injuries can also lead to chronic ischemia and fibrosis, which are predominantly submucosal changes.
Objective clinical findings do not always match patient-reported symptoms. Symptoms can include such problems as anal ulceration and bleeding, bloating and constipation, fatigue and lethargy, flatulence, hemorrhoids, insomnia, mucus discharge or steatorrhea (elevated levels of fat in feces caused by diminished intestinal absorption), nausea, abdominal or anal pain, and even the loss of a sense of taste. Late rectal bleeding appears to be a direct, dose-dependent side effect of radiation therapy, whereas other chronic toxicities of the urinary tract and intestinal mucosa, including incontinence, appear to be long-term exacerbations of acute toxicities (sometimes referred to as consequential late effects) and are independent of radiation dose. Bowel obstruction, fistulas, and secondary cancers triggered by radiation to nontarget tissues represent potentially life-threatening late toxicities stemming from pelvic radiotherapy.
The evidence base for pelvic radiation disease risks and treatments remains limited; few clinical trials or prospective studies of pelvic radiotherapy have been published. Irradiation of nontarget, healthy tissues ultimately underlies pelvic radiation disease; however, total and per-fraction radiation doses, the volume of irradiated tissues, and concomitant administration of chemotherapy or biologic agents all appear to modulate risk.
RISK ASSESSMENT
Few data are yet available about how widespread use of radiotherapeutic modalities with improved targeting, such as intensity-modulated radiotherapy (IMRT), will affect the incidence of pelvic radiation disease. Early data suggest IMRT and 3D conformal radiotherapy are associated with late GI toxicity rates of 6% and 15%, respectively, among patients treated for prostate cancer; 3.6% and 3.0%, respectively, among patients treated for cervical cancer; 7% and 3%, respectively, among patients treated for anal tumors; and 9.5% and 20%, respectively, among rectal cancer patients also undergoing neoadjuvant chemotherapy. In general, chemoradiotherapy and radiation dose intensification can improve tumor control rates, but these also increase the risk of acute and chronic toxicities.
Comorbidities and other patient factors also modulate risk. For example, diabetes nearly doubles the risk of pelvic radiation disease 5 years after radiotherapy. Tobacco use, inflammatory bowel disease, scleroderma, or a history of pelvic or abdominal surgery also appear to increase the risk of pelvic radiation disease.
Detecting late toxicities following pelvic radiotherapy traditionally depends primarily on patients completing symptoms-based questionnaires, but these tools are problematic for several reasons. Questionnaire-based assessments cannot reliably distinguish symptoms that are radiotherapy-associated chronic toxicities from symptoms with other causes. Patients' definitions of symptoms such as diarrhea can vary, as well; furthermore, patients sometimes deny stigmatizing conditions such as fecal incontinence. Patients should be educated before radiotherapy is undertaken and after its completion about the risks of late toxicity and that these effects may mimic other disorders.
"Patients may not be their own best advocates," cautions Andreyev. They may deny symptoms they have taken drastic measures to prevent to avoid social embarrassment. For example, patients experiencing debilitating urgency of defecation may prevent fecal incontinence by never leaving the house; thus staying, at most, only a few seconds away from the bathroom, or not eating for many hours before they go out.
MANAGEMENT
Symptom management is based on gastroenterologic assessments and nurse-led patient needs assessments. Some patients may need a referral to a urology or gastroenterology specialist, hyperbaric oxygen services, a pain management team, or psychological support.
In cases of extreme bowel obstruction, surgery may be necessary despite the fact that fibrotic scarring leaves patients with pelvic radiation disease at higher risk of complications from surgery. Endoscopic thermal coagulation therapy using argon plasma, laser, or heater probe can reduce pelvic radiation disease-associated bleeding; however, these treatments may cause pain, strictures, fistula, and perforation. Endoscopic formalin or cryoablation are also frequently used for bleeding, but these too have a risk of perforation, rectal ulcers, and pain.
The term radiation proctitis implies that late pelvic radiotherapy toxicities are driven by inflammation, and this sometimes leads to inappropriate treatments with corticosteroids or other antiinflammatory agents, such as 5-aminosalicylic acids. These drugs do not offer any benefits to patients with pelvic radiation disease, according to a 2002 systematic review of clinical trial data.
Opiate antagonists can reduce diarrhea in these patients and bleeding can be ameliorated with a 4-week course of oral metronidazole or sucralfate enema treatments. Fecal incontinence can be more challenging, although there is limited evidence that phenylephrine gel may help. One very small prospective, controlled study of 19 patients found that fecal incontinence declined among patients who received oral vitamin A (retinol palmitate, 10,000 IU/d for 90 days).
I'm going to read this very carefully and take notes. I had no idea this had a name!
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Atlantamp327 said:nonichol
Hi! It's good to see you back here and I hope that, other than the bowel issues, you are doing well.
After having bowel/malabsorption issues myself that didn't really present until almost 7 years out of treatment, I am making a suggestion to anyone who is having such problems post-treatment. There are some very good websites that explain radiation proctitis, radiation enteritis and malabsorption related to radiation treatment. If anyone goes to their doctor for their bowel issues, print out some of this information to take along. I think it is woefully obvious that some doctors do not have a good understanding of these issues or many of the others that people like us experience. The attitude among some seems to be that radiation got rid of our cancer and we should be just fine now. They really don't want to address the possible long-term side effects and the reasons for such. Another suggestion I might make is seeing a gastroenterologist, as colorectal doctors, oncologists, and PCP's may not be as educated with these conditions. My radiation oncologist probably has good knowledge of all of this, but he dismissed me from his care after a couple of years post-treatment.
Last March, I spoke at the International Anal Neoplasia Society's conference in Atlanta, at which time I made a point of addressing these long-term issues. Getting treatment for anal cancer is not just about getting rid of the disease but also giving the patient the best quality of life afterwards.
I wish you and everyone else on this site the best as we all move forward. May all have a very Happy Thanksgiving.
Martha
Martha,
I am so glad you spoke at the conference!!! That is awesome. Continue to educate!!!! Good job.
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nonicholnonichol said:Atlanta
Martha,
I am so glad you spoke at the conference!!! That is awesome. Continue to educate!!!! Good job.
Thank you, Norma. I was asked by Justine Almada, one of the founders of the HPV and Anal Cancer Foundation to speak, along with two other localI women who are survivors, one of them a woman I had met before. I'm not much into public speaking, but decided it was something I had to do. Among the attendees were Dr. Catherine Eng from MD Anderson and Dr. Joel Palefsky from UCSF, well-known in the specialty of treating anal cancer, along with Dr. Michael Berry, also from UCSF, which has a dysplasia clinic and treats many anal cancer patients. I had the privilege of meeting all three of them after the presentations. After it was over and I was able to breathe again
I was very glad that I did it.Martha
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Pelvic radiation disease article
Thank you so much for this article. Can you start a new thread with the article. I would have missed it as I read this thread a few days ago and I assumed people were just wishing her well. This will be so helpful for those doing research on this topic.
Wishing you the best and hopping you kick this kidney thing in the butt too!
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very interesting. I havemp327 said:Interesting Article About Pelvic Radiation Disease
This is an interesting article from the website Oncology Nurse Advisor.
Radiotherapy side effects: Understanding pelvic radiation disease
Radiotherapy side effects: Understanding pelvic radiation diseaseAs many as 50% of patients undergoing pelvic radiation therapy define their quality of life as degraded due to subsequent chronic changes to their bowel function, such as diarrhea or fecal incontinence. These late effects are common—in some cases, even life-threatening—and clearly significant for patients. But frequently, they go clinically undetected or remain untreated.
This lack of posttreatment symptom management is due, in part, to a widespread use of symptoms-driven diagnoses (eg, chronic proctitis, enteritis, cystitis) rather than making a cause-describing diagnosis. Persistent inflammation rarely underlies late radiation toxicities, leading some researchers to reject the use of terms denoting inflammatory conditions to describe late radiotherapy-associated toxicities.
EVOLVING CLINICAL PERCEPTION
Radiotherapy-associated chronic toxicity is frequently seen as an assemblage of indistinct complaints or symptoms, rather than a definable disease. Its effects are "rarely accurately measured or fully appreciated," reported an international team of researchers led by H. Jervoise N. Andreyev, PhD. Late toxicities can be difficult to differentiate from other disorders.
For example, symptom-based (eg, rectal bleeding) toxicity checklists or scales do not measure the duration of symptoms, which is an important consideration when attributing symptoms to prior radiotherapy (eg, rectal bleeding is attributable to radiotherapy only if the anterior rectal wall was irradiated; in up to 33% of cases, postradiotherapy rectal bleeding is due to causes other than the radiotherapy).
Treatment success is typically defined in terms of tumor control or eradication, rather than the long-term well-being of the patient. However, chronic toxicities can arise months or even years after radiotherapy is completed, so oncology treatment teams may never become aware of them, and other clinicians may not attribute them to a history of pelvic radiotherapy.
Experts have made a concerted effort to move away from describing chronic pelvic radiotherapy-associated toxicities as individual symptoms, recognizing them instead as manifestations of a single phenomenon referred to as pelvic radiation disease. Andreyev's team defined pelvic radiation disease as transient or longer-term problems, ranging from mild to very severe, that arise in noncancerous tissues as a result of radiation treatments to tumors of pelvic origin.
DIVERSE SYMPTOMS
The development of new symptoms affecting the bowel, urinary tract, sex organs, bones, or skin during or after radiotherapy may be pelvic radiation disease, note Andreyev and colleagues. Postradiotherapy rectal bleeding should prompt assessment of other potential manifestations of pelvic radiation disease, such as urinary or fecal incontinence.
The molecular and physiologic mechanisms leading to pelvic radiation disease are complex, and symptoms related to gastrointestinal and urinary tract dysfunction can be diverse, frequently arising from separate lesions within different parts of the GI tract. Radiotherapy can cause ulceration, acute inflammation, cell death, and edema in healthy nontarget tissues, which can be investigated with flexible rectosigmoidoscopy. These injuries can also lead to chronic ischemia and fibrosis, which are predominantly submucosal changes.
Objective clinical findings do not always match patient-reported symptoms. Symptoms can include such problems as anal ulceration and bleeding, bloating and constipation, fatigue and lethargy, flatulence, hemorrhoids, insomnia, mucus discharge or steatorrhea (elevated levels of fat in feces caused by diminished intestinal absorption), nausea, abdominal or anal pain, and even the loss of a sense of taste. Late rectal bleeding appears to be a direct, dose-dependent side effect of radiation therapy, whereas other chronic toxicities of the urinary tract and intestinal mucosa, including incontinence, appear to be long-term exacerbations of acute toxicities (sometimes referred to as consequential late effects) and are independent of radiation dose. Bowel obstruction, fistulas, and secondary cancers triggered by radiation to nontarget tissues represent potentially life-threatening late toxicities stemming from pelvic radiotherapy.
The evidence base for pelvic radiation disease risks and treatments remains limited; few clinical trials or prospective studies of pelvic radiotherapy have been published. Irradiation of nontarget, healthy tissues ultimately underlies pelvic radiation disease; however, total and per-fraction radiation doses, the volume of irradiated tissues, and concomitant administration of chemotherapy or biologic agents all appear to modulate risk.
RISK ASSESSMENT
Few data are yet available about how widespread use of radiotherapeutic modalities with improved targeting, such as intensity-modulated radiotherapy (IMRT), will affect the incidence of pelvic radiation disease. Early data suggest IMRT and 3D conformal radiotherapy are associated with late GI toxicity rates of 6% and 15%, respectively, among patients treated for prostate cancer; 3.6% and 3.0%, respectively, among patients treated for cervical cancer; 7% and 3%, respectively, among patients treated for anal tumors; and 9.5% and 20%, respectively, among rectal cancer patients also undergoing neoadjuvant chemotherapy. In general, chemoradiotherapy and radiation dose intensification can improve tumor control rates, but these also increase the risk of acute and chronic toxicities.
Comorbidities and other patient factors also modulate risk. For example, diabetes nearly doubles the risk of pelvic radiation disease 5 years after radiotherapy. Tobacco use, inflammatory bowel disease, scleroderma, or a history of pelvic or abdominal surgery also appear to increase the risk of pelvic radiation disease.
Detecting late toxicities following pelvic radiotherapy traditionally depends primarily on patients completing symptoms-based questionnaires, but these tools are problematic for several reasons. Questionnaire-based assessments cannot reliably distinguish symptoms that are radiotherapy-associated chronic toxicities from symptoms with other causes. Patients' definitions of symptoms such as diarrhea can vary, as well; furthermore, patients sometimes deny stigmatizing conditions such as fecal incontinence. Patients should be educated before radiotherapy is undertaken and after its completion about the risks of late toxicity and that these effects may mimic other disorders.
"Patients may not be their own best advocates," cautions Andreyev. They may deny symptoms they have taken drastic measures to prevent to avoid social embarrassment. For example, patients experiencing debilitating urgency of defecation may prevent fecal incontinence by never leaving the house; thus staying, at most, only a few seconds away from the bathroom, or not eating for many hours before they go out.
MANAGEMENT
Symptom management is based on gastroenterologic assessments and nurse-led patient needs assessments. Some patients may need a referral to a urology or gastroenterology specialist, hyperbaric oxygen services, a pain management team, or psychological support.
In cases of extreme bowel obstruction, surgery may be necessary despite the fact that fibrotic scarring leaves patients with pelvic radiation disease at higher risk of complications from surgery. Endoscopic thermal coagulation therapy using argon plasma, laser, or heater probe can reduce pelvic radiation disease-associated bleeding; however, these treatments may cause pain, strictures, fistula, and perforation. Endoscopic formalin or cryoablation are also frequently used for bleeding, but these too have a risk of perforation, rectal ulcers, and pain.
The term radiation proctitis implies that late pelvic radiotherapy toxicities are driven by inflammation, and this sometimes leads to inappropriate treatments with corticosteroids or other antiinflammatory agents, such as 5-aminosalicylic acids. These drugs do not offer any benefits to patients with pelvic radiation disease, according to a 2002 systematic review of clinical trial data.
Opiate antagonists can reduce diarrhea in these patients and bleeding can be ameliorated with a 4-week course of oral metronidazole or sucralfate enema treatments. Fecal incontinence can be more challenging, although there is limited evidence that phenylephrine gel may help. One very small prospective, controlled study of 19 patients found that fecal incontinence declined among patients who received oral vitamin A (retinol palmitate, 10,000 IU/d for 90 days).
very interesting. I have many of these symptoms myself. I just deal with it figuring this is just the way it will be......
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PhoebesnowPhoebesnow said:Pelvic radiation disease article
Thank you so much for this article. Can you start a new thread with the article. I would have missed it as I read this thread a few days ago and I assumed people were just wishing her well. This will be so helpful for those doing research on this topic.
Wishing you the best and hopping you kick this kidney thing in the butt too!
Yes, I will put it on a new thread.
Thanks for the good wishes. Hugs!
Martha
0
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