Let's talk about radiation
Comments
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urine stream/flowunknown said:Thanks for the giggles.
I'm sorry, you have had it much worst than I so I shouldn't be whining, but I identify with the stay hydrated line. Finally last treatment time, I had a different chemo nurse who told me I only had to drink lots of water the first week after chemo to flush it out of my kidneys, then after that I could relax a little. Only now, along with all the other "common side effects which should go away after chemo is finished", I am now (ahem) losing bladder control a little. Great, if it gets worse I'll be checking out the adult diapers at my local store!
Did anyone experience a slower stream after your treatments? Hysto, chemo or brachy?
Mine is definitely different. Much slower. Not sure which of the treatments would impact this but I sure hope it goes back to normal soon.
It isn't painful. Just SLOW. And my fear is it will stop working one of these days. Yikes!
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Urine flowTeddyandBears_Mom said:urine stream/flow
Did anyone experience a slower stream after your treatments? Hysto, chemo or brachy?
Mine is definitely different. Much slower. Not sure which of the treatments would impact this but I sure hope it goes back to normal soon.
It isn't painful. Just SLOW. And my fear is it will stop working one of these days. Yikes!
i just finished my final torture of internal radiation! Yeah! I am having some burning with urinating and slower flow for me, probably from pain. I'm just so happy it is over. I hope the pain ends soon!
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Slow flowTeddyandBears_Mom said:urine stream/flow
Did anyone experience a slower stream after your treatments? Hysto, chemo or brachy?
Mine is definitely different. Much slower. Not sure which of the treatments would impact this but I sure hope it goes back to normal soon.
It isn't painful. Just SLOW. And my fear is it will stop working one of these days. Yikes!
Yes, ever since my surgery I have had a slower flow. It is a little better now, 2 years later!, but still slower and weaker than in the past. It often feels like I am not fully emptying my bladder. And so... Life goes on.
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Soup / SandySandy3185 said:Slow flow
Yes, ever since my surgery I have had a slower flow. It is a little better now, 2 years later!, but still slower and weaker than in the past. It often feels like I am not fully emptying my bladder. And so... Life goes on.
Soup - I fortunately did not have any pain. My radiologist told me to take an over the counter med for any burning. I can't remember what it is called - but something like Avo???? I tried to find the paperwork but think I tossed it. I'm sure a pharmacy person will know what it is.
Sandy - Thanks for the response. I had a feeling this was normal. Just wanted to make sure I don't wake up some morning and not be able to go. Like you, I don't always feel like I'm empty. On another note: how long did it take you to build up your strength after surgery, chemo and brachy? I'm 6.5 weeks out of chemo and a week out of brachy and I am still not all that energetic. And, my breathing is still labored when I do any kind of cardio related activities. I'm getting impatient!
Love and Hugs,
Cindi
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AZO - Relief for Urinary PainTeddyandBears_Mom said:Soup / Sandy
Soup - I fortunately did not have any pain. My radiologist told me to take an over the counter med for any burning. I can't remember what it is called - but something like Avo???? I tried to find the paperwork but think I tossed it. I'm sure a pharmacy person will know what it is.
Sandy - Thanks for the response. I had a feeling this was normal. Just wanted to make sure I don't wake up some morning and not be able to go. Like you, I don't always feel like I'm empty. On another note: how long did it take you to build up your strength after surgery, chemo and brachy? I'm 6.5 weeks out of chemo and a week out of brachy and I am still not all that energetic. And, my breathing is still labored when I do any kind of cardio related activities. I'm getting impatient!
Love and Hugs,
Cindi
Cindi, I think the product you're referring to is Azo. I've used it in the past to treat UTIs. It's cheap and available at most drug stores. So much easier than drinking tons of cranberry juice!
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CindiTeddyandBears_Mom said:Soup / Sandy
Soup - I fortunately did not have any pain. My radiologist told me to take an over the counter med for any burning. I can't remember what it is called - but something like Avo???? I tried to find the paperwork but think I tossed it. I'm sure a pharmacy person will know what it is.
Sandy - Thanks for the response. I had a feeling this was normal. Just wanted to make sure I don't wake up some morning and not be able to go. Like you, I don't always feel like I'm empty. On another note: how long did it take you to build up your strength after surgery, chemo and brachy? I'm 6.5 weeks out of chemo and a week out of brachy and I am still not all that energetic. And, my breathing is still labored when I do any kind of cardio related activities. I'm getting impatient!
Love and Hugs,
Cindi
I am going back a while but after my 1st go round with this. I had my last chemo in the 1st of June and it took almost until school started at the end of August for me to get most of my strength back. It is a long slow process. It is so hard because you so want all of this to be behind you. It will happen but it takes time. Your body has been through so much. It needs time to recuperate. Hugs and prayers , Lou Ann.
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AZOTeddyandBears_Mom said:Soup / Sandy
Soup - I fortunately did not have any pain. My radiologist told me to take an over the counter med for any burning. I can't remember what it is called - but something like Avo???? I tried to find the paperwork but think I tossed it. I'm sure a pharmacy person will know what it is.
Sandy - Thanks for the response. I had a feeling this was normal. Just wanted to make sure I don't wake up some morning and not be able to go. Like you, I don't always feel like I'm empty. On another note: how long did it take you to build up your strength after surgery, chemo and brachy? I'm 6.5 weeks out of chemo and a week out of brachy and I am still not all that energetic. And, my breathing is still labored when I do any kind of cardio related activities. I'm getting impatient!
Love and Hugs,
Cindi
is what my radiologist suggested if I experience any burning, urgency etc.
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Ladies - That's IT! AZOEditgrl said:AZO
is what my radiologist suggested if I experience any burning, urgency etc.
I was close. LOL... chemo brain and all. Maybe the fog has lifted and it is time to try and read a book again.
LouAnn - thanks for the encouragement. I do feel a bit guilty for even complaining - my journey so far has not been nearly as hard as many of you have had. And, there you are continuing to be an excellent coach. You are amazing.
Love and Hugs,
Cindi
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CindiTeddyandBears_Mom said:Soup / Sandy
Soup - I fortunately did not have any pain. My radiologist told me to take an over the counter med for any burning. I can't remember what it is called - but something like Avo???? I tried to find the paperwork but think I tossed it. I'm sure a pharmacy person will know what it is.
Sandy - Thanks for the response. I had a feeling this was normal. Just wanted to make sure I don't wake up some morning and not be able to go. Like you, I don't always feel like I'm empty. On another note: how long did it take you to build up your strength after surgery, chemo and brachy? I'm 6.5 weeks out of chemo and a week out of brachy and I am still not all that energetic. And, my breathing is still labored when I do any kind of cardio related activities. I'm getting impatient!
Love and Hugs,
Cindi
My onco nurse told me the labored breathing some of us experience is due to white blood count / platelets / hemoglobin. .. basically it's depleted blood. I too am looking forward to regaining my full strength. I've still got one more infusion scheduled, I can hardly wait to complete this series. I marvel at people on this board who have had 29 and 47 infusions. I'm so impressed by their strength and endurance.
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GardenaGardena said:Cindi
My onco nurse told me the labored breathing some of us experience is due to white blood count / platelets / hemoglobin. .. basically it's depleted blood. I too am looking forward to regaining my full strength. I've still got one more infusion scheduled, I can hardly wait to complete this series. I marvel at people on this board who have had 29 and 47 infusions. I'm so impressed by their strength and endurance.
Thanks! My white blood count took a hit with the Brachy. It was barely in the low normal range when I started so I know I need to just be patient.
I'm still amazed at how much our bodies can take and still recover from... I agree with you on our ladies that continue on maintenance. And pray everyday for that magic formula that could bring everyone to NED / CURE forever.
Love and Hugs,
Cindi
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TeddyandBears_Mom said:
Gardena
Thanks! My white blood count took a hit with the Brachy. It was barely in the low normal range when I started so I know I need to just be patient.
I'm still amazed at how much our bodies can take and still recover from... I agree with you on our ladies that continue on maintenance. And pray everyday for that magic formula that could bring everyone to NED / CURE forever.
Love and Hugs,
Cindi
I finished chemo in May and brachytherapy in June 2014. By the beginning of August I was feeling a lot better but it wasn't until the end of the year that I got all my energy back and didn't get exhausted after every little chore. So at 3 months out I was feeling pretty good but it was another 3 months until I felt "normal". It took about 1+ years for most of the neuropathy to go away, my hair is pretty thin and I still don't have the endurance I used to but I feel great. I'm gardening, traveling and walking around Disney all day with my grandkids. I feel great! Sandy
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SandySandy3185 said:I finished chemo in May and brachytherapy in June 2014. By the beginning of August I was feeling a lot better but it wasn't until the end of the year that I got all my energy back and didn't get exhausted after every little chore. So at 3 months out I was feeling pretty good but it was another 3 months until I felt "normal". It took about 1+ years for most of the neuropathy to go away, my hair is pretty thin and I still don't have the endurance I used to but I feel great. I'm gardening, traveling and walking around Disney all day with my grandkids. I feel great! Sandy
Thanks! The timeline helps. I'll give myself a break! I just kept thinking I had gotten lazy and was using excuses not to do anything. (Which is not normally me.)
Your description of exhaustion after every little chore is perfect for what I'm experiencing.
My neuropothy has gotten a lot better. I still do have some tingling and numbness but not nearly as bad as even a week ago.
I will say this.... for the first time since the entire journey started... I have ZERO doctor appointments next week! Now, that is progress! :-)
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It's great to hear your neuropathy is betterTeddyandBears_Mom said:Sandy
Thanks! The timeline helps. I'll give myself a break! I just kept thinking I had gotten lazy and was using excuses not to do anything. (Which is not normally me.)
Your description of exhaustion after every little chore is perfect for what I'm experiencing.
My neuropothy has gotten a lot better. I still do have some tingling and numbness but not nearly as bad as even a week ago.
I will say this.... for the first time since the entire journey started... I have ZERO doctor appointments next week! Now, that is progress! :-)
When did your neuropathy start? Did it ever get better between chemo or did it just build? I have read that if neuropathy starts after your first treatment (mine did) and doesn't get better between chemos (mine hasn't) that it's likely to be perment. I worry about my fingertips, right now they feel like they're not part of my hands, stiff, hard and dry, prickly. But it's my feet that I'm most worried about. They were only slightly numb even after chemo 3, however, this last week leading into chemo 4 week, they've become increasingly numb, stiff, tight, often feel like pins poking into the tips of the toes. I know before last chemo #3, the nurse said they discussed lowering my does because of this, I said no, full steam ahead. I just wish I knew if they would recovr somewhat after chemo, or if I could eventually lose the use of my feet and fingers.
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Neuropathyunknown said:It's great to hear your neuropathy is better
When did your neuropathy start? Did it ever get better between chemo or did it just build? I have read that if neuropathy starts after your first treatment (mine did) and doesn't get better between chemos (mine hasn't) that it's likely to be perment. I worry about my fingertips, right now they feel like they're not part of my hands, stiff, hard and dry, prickly. But it's my feet that I'm most worried about. They were only slightly numb even after chemo 3, however, this last week leading into chemo 4 week, they've become increasingly numb, stiff, tight, often feel like pins poking into the tips of the toes. I know before last chemo #3, the nurse said they discussed lowering my does because of this, I said no, full steam ahead. I just wish I knew if they would recovr somewhat after chemo, or if I could eventually lose the use of my feet and fingers.
My doctor suggested L-Glutamine, Vitamin B-1, B-6 and B-12 to help with the neuropathy. You might ask your doctor about that. I had been taking B-12 before chemo and was taking L-Glutamine for the first few days of chemo anyway before the neuropathy started. I don't know if it was because of that or not, but mine wasn't too bad, mostly mild numbness and no pain. It didn't show up until chemo #4.
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Mine started after the fullEditgrl said:Neuropathy
My doctor suggested L-Glutamine, Vitamin B-1, B-6 and B-12 to help with the neuropathy. You might ask your doctor about that. I had been taking B-12 before chemo and was taking L-Glutamine for the first few days of chemo anyway before the neuropathy started. I don't know if it was because of that or not, but mine wasn't too bad, mostly mild numbness and no pain. It didn't show up until chemo #4.
Mine started after the full round of chemo #3 and progressed from there. It didn't get better in between treatments.
I mostly didn't have pain with it except some burning and pins like you described. I still get some surprise sharp pains now but not all that often.
I have not heard of anyone having permanent full damage - only some continued partial numbness with pain. So, I'm hoping that yours isn't fully permanent!
Stay strong and maybe consider a slight reduction in your dose?
Love and Hugs,
Cindi
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Yes I take B6 & B12Editgrl said:Neuropathy
My doctor suggested L-Glutamine, Vitamin B-1, B-6 and B-12 to help with the neuropathy. You might ask your doctor about that. I had been taking B-12 before chemo and was taking L-Glutamine for the first few days of chemo anyway before the neuropathy started. I don't know if it was because of that or not, but mine wasn't too bad, mostly mild numbness and no pain. It didn't show up until chemo #4.
My doctor started me with B6, 100mg each day, but I added B12, 5000 sublingual myself,and I told them I added that vitamin also D3. My GP had tried B12 previously for my sciatic like pain in my right leg. After reading lots about B12, it didn't seem like it would hurt if I tried it, the nurse added it to my chart but didn't say don't take it. I'm not taking L-Glutamine or B1. I read good things about L-Glutamine but read one article on WebMD that said it might interfer with chemo? I asked my nurse (the previous one I didn't like) about it and she said she had never heard about it, and suggessted to not add anything. My new nurse seems really good so I'll mention it to her next week when I'm ready for chemo 4. I've tried to read anything on reduced dose chemo and can't find much so I'm hesitant to say yes just because I don't want any stay cancer cells to get a reprive alone with my good cells. Hugs Nancy
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Maureen, I was out of townMoeKay said:Please Be Thorough In Your Radiation Decision-Making
I realize that my case goes back a good while, but I feel it's important to state my piece. I was diagnosed with endometrial cancer in early 1999. I obtained three opinions before starting treatment. I selected a highly-regarded gynecologic oncologist with about 30 years experience to perform my surgery. At my initial consult, after reviewing my slides, my gyn-onc told my husband and me that after surgery some women need no radiation, some need only brachytherapy, some need only pelvic radiation, and some need both.
I had a radical hysterectomy because when my gyn-onc opened me up, he saw a bulbous swelling involving the upper cervix. He also found palpably enlarged lymph nodes on the left side and large nodes on the right side, so he performed a pelvic and paraaortic lymphadenectomy. My gyn-onc advised me, confirmed by pathology, that I had a deeply-invasive grade 2 tumor which had invaded more than 80% of my myometrium or uterine wall. The tumor was fairly large (approx. 4 cm.), had extensively invaded the lymph-vascular space, and involved the lower uterine segment, which was another risk factor for recurrence. As you might guess, I fell into the group of women who my gyn-onc firmly believed needed both internal and external radiation.
Because of the distance I lived from my gyn-onc, I went for radiation at an unaffiliated hospital about an hour away. I just pulled out my radiation consent form from 1999, and it provides an extensive, but not all-inclusive, list of side effects. Suffice it to say that anyone reading the list gets the idea that radiation is serious business. The consent form also states, "I understand that even with the most careful planning and administration of treatment, unforeseen side effects may occur because of the unique and varied tolerance of individual persons. Late effects of the treatment may not always be predictable, and may be influenced by subsequent treatment for this or other diseases." I know my radiation oncologist discussed side effects with me, but I can't remember specifics. (I may have more details in my notes, but haven't gone through them to draft this post).
I do have intermittent bowel effects from radiation. Are they at times inconvenient? Certainly. However, I am very healthy and can do many things that a lot of other women of my age (68) cannot. I am usually at the gym taking a variety of classes 5 or 6 days a week. I recently retired and when I'm not down the shore, I have been running up and down the steps in my house at least 50 times a day. When I plan vacations, I do consider access to bathrooms, for the days I have to make more frequent trips to the restroom. However, my husband and I travel several times a year.
I guess my real point is you certainly have the right to refuse pelvic radiation, because the risks of long-term side effects are real. However, I would strongly advise you to make sure that you are not jeopardizing your life. You clearly won't have any side effects if you succumb to the cancer. For years I've heard women say that they feared the side effects of radiation, so they decided to decline radiation after surgery because, "I can always get it later, if I recur." Based on all I've read, learned, and seen over the years, I'm not convinced that a cure can always be achieved on recurrence. My advice is to just be sure that if you decide to decline pelvic radiation, you do it after being fully informed about the potential consequences of that decision.
Wishing you all the best,
Maureen
Maureen, I was out of town and only had a chance to read your reply today. I wanted to thank you for your post. In no way did I intend to direct women to NOT take radiation as a treatment. I, myself, had internal and brachytherapy and knowing what I know now, I can't tell you if I would or would not do it again. I know at the time, and I still feel this way today, I wanted to do everything I could to beat this beast to death.
I should add a note to this thread, as a result of the brachy you are given a dialator to use as the treatment causes your vagina to 'shrink'. It was on CSN that I read a dear, beloved woman write that you have to use the dialator every day, not just the 3 times a week. I did point this out to my friend and she said that after going to daily her doctor was able to realize a difference in the ease of the internal exams.
This thread is exactly why I am so grateful for CSN. To me, these are the conversations, where we can have these discussions and share our stories on treatment, side effects, etc...that truly can help all of us.
Foot note: I was traveling this past week and found a woman's purse on a city's mass transit system. Fortunately, she did not have a lock or finger swipe on her phone and we were able to call someone in her phone and get her purse back to her. Of course, the woman and her husband wanted to do something for me to show their appreciation, but I asked that they pray for a cure for cancer. We have lost too many friends to this terrible disease. (I write this as a note for everyone who locks their phone. There are good and bad people out there. I have found at least 4 cell phones in a variety of places, and now one purse, and was able to get them back to the rightful owner because their phones were not locked. That is something to think about)
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My fingers started going numbunknown said:Yes I take B6 & B12
My doctor started me with B6, 100mg each day, but I added B12, 5000 sublingual myself,and I told them I added that vitamin also D3. My GP had tried B12 previously for my sciatic like pain in my right leg. After reading lots about B12, it didn't seem like it would hurt if I tried it, the nurse added it to my chart but didn't say don't take it. I'm not taking L-Glutamine or B1. I read good things about L-Glutamine but read one article on WebMD that said it might interfer with chemo? I asked my nurse (the previous one I didn't like) about it and she said she had never heard about it, and suggessted to not add anything. My new nurse seems really good so I'll mention it to her next week when I'm ready for chemo 4. I've tried to read anything on reduced dose chemo and can't find much so I'm hesitant to say yes just because I don't want any stay cancer cells to get a reprive alone with my good cells. Hugs Nancy
My fingers started going numb after my first chemo and never got better between chemos. After the third one, my face (cheeks) and my toes were all numb, swollen and stiff. The fingers on my right hand were really bad. I can't take B12 because mine is already higher than normal, which was what triggered my GP to do the liver tests on me (apparently high B12 can indicate liver disease). I have noticed that I do not have as much pain in my feet at night and the little finger on my left hand has gotten some feeling back in it. I'm going to talk to my doctor when I go in on the 22nd about the L-Glutamine. I'm afraid to take anything without her ok because of my liver problems.
I worry too that by not completing all six chemos I have not given myself the best chance to beat this, however, then I talked to another lady on this site, her doctor only recommended three chemos to begin with. But then another had her cancer recurr a couple of months after she finished her sixth chemo. I guess only time will tell.
In the meantime, I'm going to live my life to the fullest, numb hands and feet be damned. Tomorrow we're driving about 100 miles to see one of our granddaughters in the final performance of her high school play and then taking all three grandkids along with their parents to the Olive Garden to celebrate. Before this cancer we probably would not have done this - too far to drive, it might snow, I might get sick, there'll be other plays....but not anymore - we are not taking anything for granted anymore!
Love,
Eldri
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EldriEZLiving66 said:My fingers started going numb
My fingers started going numb after my first chemo and never got better between chemos. After the third one, my face (cheeks) and my toes were all numb, swollen and stiff. The fingers on my right hand were really bad. I can't take B12 because mine is already higher than normal, which was what triggered my GP to do the liver tests on me (apparently high B12 can indicate liver disease). I have noticed that I do not have as much pain in my feet at night and the little finger on my left hand has gotten some feeling back in it. I'm going to talk to my doctor when I go in on the 22nd about the L-Glutamine. I'm afraid to take anything without her ok because of my liver problems.
I worry too that by not completing all six chemos I have not given myself the best chance to beat this, however, then I talked to another lady on this site, her doctor only recommended three chemos to begin with. But then another had her cancer recurr a couple of months after she finished her sixth chemo. I guess only time will tell.
In the meantime, I'm going to live my life to the fullest, numb hands and feet be damned. Tomorrow we're driving about 100 miles to see one of our granddaughters in the final performance of her high school play and then taking all three grandkids along with their parents to the Olive Garden to celebrate. Before this cancer we probably would not have done this - too far to drive, it might snow, I might get sick, there'll be other plays....but not anymore - we are not taking anything for granted anymore!
Love,
Eldri
I think that is one of the gifts we receive out of the bad cancer things... The awareness that life is precious and not guaranteed. Living in the moment and taking the time to truly enjoy the things that matter. I call that a gift. I hope you have a safe and fun trip! Love and Hugs, Cindi
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Peripheral Neuropathy
Mine also started after my first treatment. It didn't lessen at all between treatments, just became worse each time. By the time I had finished my third treatment, my hands and fingers were tingly at times and quite numb. My feet and especially the soles of my feet and my toes were also numb. After the third treatment I also began to get a shooting "electrical" pain in my right thigh that would go down to my knee and lasted for about 30 seconds at a time. My doctor switched me to Taxotere because of this and after that the neuropathy didn't get any worse but did not really start to diminish until I had been done with treatment for a few months. It did very gradually go away but it has taken a long time and I still have some minor numbness in my toes.
As an aside, I have had restless leg syndrome for many years and it did get worse during treatment. I am wondering if there is a relationship between this and the neuropathy especially as my restless leg(s) are worse than ever. I know there are a few others here who have mentioned that they also suffer from restless leg syndrome. Sandy
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