Let's talk about radiation

AWK
AWK Member Posts: 364 Member
edited September 2015 in Uterine Cancer #1

I see a lot of great questions, concerns, information on it buried in other threads and thought it would be good to start a conversation on it.  I was diagnosed originally with Stage IIIC UPSC in April 2013.  My cancer continues to be active and progressive with mets found shortly after I finished frontline chemo and radiation.  I had 28 topical radiation treatments and three brachytherapy.  In my progression of disease over the last two years i ought I would share that the areas that were radiated were where active mets and cancer were originally found - targeted at the "source sites in my mind".  I asked the doctors about the need for radiation and the difference between that and chemo.  He had an interesting answer which was think locally (radiation) and act globally (chemo).  The radiation is targeted and the chemo is systematic.  

I did well with both the radiation and brachytherapy and thought I would note that with all of my progression the radiation fields are clear with no active cancer.  My issue is systematic.  But I am doing well and living fully.  Anne

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Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Thanks Anne

    Thanks for once again thinking about the bigger picture and starting this new thread. It will sure help to find the answers down the road too!

    Also, appreciate the answer to why both.  Not that I like it but I do get it. :-)

    I hope you are getting close to the end of your tough days from your last treatment!

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    Acting (locally)

    Thanks for your information, Anne.  I do have a couple of questions.  I was going to ask the radiation oncologist next week, but since we have this thread...

    Did you have a scan between chemo and radiation? Did you initially have tumors outside of the uterus or cancer cells in your pelvic wash?  

    I was diagnosed with Stage 3c, Grade 3 carcinosarcoma, very aggressive.  While the tumor itself was contained in the uterus, they found cancer in some of the lymph nodes they removed, but my pelvic wash was clear.  I'm trying to figure out if the radiation is targeted, what do they target when there is no met? I'm not speaking of brachytherapy here.

    I understand chemo being systemic.  I guess all of my experience hearing about radiation from people I've known is that there is a specific target they are aiming at.  Otherwise, it seems to me like using a sledgehammer on a thumbtack.  

    I would also like to hear from slender women who have undergone pelvic radiation which is what my doctor recommended.  He already warned me that because of my size, i would probably have significant side effects.  I'm trying to decide if this treatment, at this time, is worth the risk.

    Chris

  • AWK
    AWK Member Posts: 364 Member
    Editgrl said:

    Acting (locally)

    Thanks for your information, Anne.  I do have a couple of questions.  I was going to ask the radiation oncologist next week, but since we have this thread...

    Did you have a scan between chemo and radiation? Did you initially have tumors outside of the uterus or cancer cells in your pelvic wash?  

    I was diagnosed with Stage 3c, Grade 3 carcinosarcoma, very aggressive.  While the tumor itself was contained in the uterus, they found cancer in some of the lymph nodes they removed, but my pelvic wash was clear.  I'm trying to figure out if the radiation is targeted, what do they target when there is no met? I'm not speaking of brachytherapy here.

    I understand chemo being systemic.  I guess all of my experience hearing about radiation from people I've known is that there is a specific target they are aiming at.  Otherwise, it seems to me like using a sledgehammer on a thumbtack.  

    I would also like to hear from slender women who have undergone pelvic radiation which is what my doctor recommended.  He already warned me that because of my size, i would probably have significant side effects.  I'm trying to decide if this treatment, at this time, is worth the risk.

    Chris

    Glad you ladies replied!

    This will be a good source of information for all of us!  My cancer, also Grade 3 - involved a tumor in my uterus that penetrated 81 percent, a tumor in my right ovary and three pelvic lymph nodes.  My pelvic wash was clean, now we know the cancer was already systematic at that point.  It was just waiting to reveal itself.  I didn't have scans between chemo and radiation; just rolled from one into the other.  

  • Abbycat2
    Abbycat2 Member Posts: 644
    AWK said:

    Glad you ladies replied!

    This will be a good source of information for all of us!  My cancer, also Grade 3 - involved a tumor in my uterus that penetrated 81 percent, a tumor in my right ovary and three pelvic lymph nodes.  My pelvic wash was clean, now we know the cancer was already systematic at that point.  It was just waiting to reveal itself.  I didn't have scans between chemo and radiation; just rolled from one into the other.  

    Good thread, Anne

    I decided not to receive brachytherapy. Since I didn't have Ca on the vaginal cuff, I didn't see the point of radiating healthy tissue. Now, should I have a recurrence on the vaginal cuff, I would quite likely op for the brachytherapy. I saw a radiologist after being diagnosed with stage 3a UPSC, a grade 3 Ca. He said that radiation is always aimed at something, like a gun.  In my case, he said that he could not radiate the cancer in my peritoneal cavity without destroying my colon, stomach or urinary bladder. Another words, without killing me. I had a positive pelvic wash that only chemo could address.

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Radiation[

    I was dx with stage 4 very aggressive endometrial cancer in Aug. 2012.  1st round treatment included 28 external and 2 internal radiation treatments.  External was aimed  at 9 different places and took a total of about 20 minutes.  i hated the laying still for that long, but the result was good .. i have had no return to the area of radiaation.  The only side effect that I had at the time was diarhea, which was controlled with Imodium.  I was teaching full time at the time and missed no days of school because of it.  I had no burns or even redness on my skin.  For awhile my large bones in my pelvis had trouble manufacturing blood during chemo, but that straiten out after a few months,  i had some problems with diarhea for awhile after, but that to cleared up.  All in all it was fairly easy.  When My cancer reoccured my radioloigist recomended chemo because of the systematic nature of my cancer.  Hugs and prayer to all, Lou Ann

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Editgrl said:

    Acting (locally)

    Thanks for your information, Anne.  I do have a couple of questions.  I was going to ask the radiation oncologist next week, but since we have this thread...

    Did you have a scan between chemo and radiation? Did you initially have tumors outside of the uterus or cancer cells in your pelvic wash?  

    I was diagnosed with Stage 3c, Grade 3 carcinosarcoma, very aggressive.  While the tumor itself was contained in the uterus, they found cancer in some of the lymph nodes they removed, but my pelvic wash was clear.  I'm trying to figure out if the radiation is targeted, what do they target when there is no met? I'm not speaking of brachytherapy here.

    I understand chemo being systemic.  I guess all of my experience hearing about radiation from people I've known is that there is a specific target they are aiming at.  Otherwise, it seems to me like using a sledgehammer on a thumbtack.  

    I would also like to hear from slender women who have undergone pelvic radiation which is what my doctor recommended.  He already warned me that because of my size, i would probably have significant side effects.  I'm trying to decide if this treatment, at this time, is worth the risk.

    Chris

    Hi, Chris

    I don't remember having a scan between , but i had what thery call a sandwich treatment, 3 chemo, radiation, and 3 more chemo..  i think they have very specific areas that the aim at  the radiologist does do a scan and then goes over it to plan exactly where his machine willmbe aimed.  They make a mold for you to lay on to keep you from moving and you are not supposedto move at all.  i think in my case they radiated the spots where the surgeon sliced and diced. to make sure they were clean. That area of me has remained cancer free.

    My cancer had spread out of the uterus into the cervics and 3 small spots behind no lymph node involvment, but the wash showed cancer cells.  Hugs and prayers, Lou Ann

     

     

  • caedmon22
    caedmon22 Member Posts: 22
    great idea, thanks anne

    i too wondered what exactly they were shooting at with radiation, but my rad onc said that the pelvic radiation would reduce my statistical chances of recurrence there from 20% to 10%, and the brachy would reduce statistical chances of recurrence there from 15% to pretty much 0%. since uterine clear cell occurs in 4% of cases, i figured i might as well do my best to get out ahead of those numbers in any way possible. (and yeah, i know i'm a statistic of one -- just getting this cancer in the first place seemed so random...i had ZERO potential pre-conditions). mine was stage 1a, grade 3 (clear cell). much less than 50% into the myometrium, high in the uterus, clear nodes and pelvic wash. BUT they found cells in the uterine lymph. so i guess the idea was on the off chance those cells had buddies who had escaped into neighborhood but weren't going to show up in the path report, this was a way to head them off at the pass. i haven't had any adverse effects from the radiation so far. tiny bit of poo issues. have to do the dilator, which i could live without but is a small price to pay. i do worry about recurrence. especially as i get closer to my next visit to my surgeon. it's an aggressive cancer. but i also feel like i did what i could at the time to prevent it, according to information available to me.

  • AWK
    AWK Member Posts: 364 Member
    AWK said:

    Glad you ladies replied!

    This will be a good source of information for all of us!  My cancer, also Grade 3 - involved a tumor in my uterus that penetrated 81 percent, a tumor in my right ovary and three pelvic lymph nodes.  My pelvic wash was clean, now we know the cancer was already systematic at that point.  It was just waiting to reveal itself.  I didn't have scans between chemo and radiation; just rolled from one into the other.  

    Sorry I had to step away!

    In terms of the radiation my understanding is they target the specific sites where the cancer was in order to destroy anything lurking there.    In my case the brachytherapy was recommended for the same reason - to go after anything lurking there even though my cervix (removed) and vagina were cancer free from a surgical perspective. 

    Now with hindsight I wonder about impacts to the bones and also bone marrow; especially given my issues wth bone marrow production.  It is hard to say if the radiation is tied into that given my thirty ish infusions etc.  Either way I wouldn't change  thing about it.  

    Side effects for me were fatigue and  course - diahhrea.  I got medicine for that after about 10 rounds.  I never got burns internally or externally.  Externally my nurse told me to get Aquaphor or something similar.  She said to put it on the radiation spots when I got home after the treatment starting with the first one.  Not to wait for itching or burning.  I think that was great advice.  

    Hugs and prayers ladies!  Anne

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    caedmon22 said:

    great idea, thanks anne

    i too wondered what exactly they were shooting at with radiation, but my rad onc said that the pelvic radiation would reduce my statistical chances of recurrence there from 20% to 10%, and the brachy would reduce statistical chances of recurrence there from 15% to pretty much 0%. since uterine clear cell occurs in 4% of cases, i figured i might as well do my best to get out ahead of those numbers in any way possible. (and yeah, i know i'm a statistic of one -- just getting this cancer in the first place seemed so random...i had ZERO potential pre-conditions). mine was stage 1a, grade 3 (clear cell). much less than 50% into the myometrium, high in the uterus, clear nodes and pelvic wash. BUT they found cells in the uterine lymph. so i guess the idea was on the off chance those cells had buddies who had escaped into neighborhood but weren't going to show up in the path report, this was a way to head them off at the pass. i haven't had any adverse effects from the radiation so far. tiny bit of poo issues. have to do the dilator, which i could live without but is a small price to pay. i do worry about recurrence. especially as i get closer to my next visit to my surgeon. it's an aggressive cancer. but i also feel like i did what i could at the time to prevent it, according to information available to me.

    3 Brachy Schedule

    Hi,

    What is the schedule for the internal radiation?  It seems like 3 times is the standard? If that is true, how are they scheduled?  I mean, is it every day for 3 days, or 3 weeks apart like the chemo normally is or???  Also, I'm seeing comments that it causes fatigue.  How long does that last?  Also, for those that had all chemo first, then had the brachy, did you get a few weeks reprieve after the chemo was finished? 

    Thanks in advance.  I'm sure I'll have more questions the closer I get to this part!

    Cindi

  • AWK
    AWK Member Posts: 364 Member

    3 Brachy Schedule

    Hi,

    What is the schedule for the internal radiation?  It seems like 3 times is the standard? If that is true, how are they scheduled?  I mean, is it every day for 3 days, or 3 weeks apart like the chemo normally is or???  Also, I'm seeing comments that it causes fatigue.  How long does that last?  Also, for those that had all chemo first, then had the brachy, did you get a few weeks reprieve after the chemo was finished? 

    Thanks in advance.  I'm sure I'll have more questions the closer I get to this part!

    Cindi

    Mine were once a week

    The appointments lasted an hour mostly due to the positioning and set up.  The actual treatment was only five plus minutes at most.  The team was gentle and respectful so that helped.  My doctor prescribed Ativan for each treatment to cut down on the anxiety, I took it about 45 minutes prior.  I had low energy just rom the cumulative effects of chemo, then radiation then brachytherapy; I wouldn't attribute it just to the brachytherapy.  

    I had a  break between chemo and radiation, I think about ten days.  After I had the brachytherapy treatments I would go home and crash due to the Ativan.  It wasn't easy but i didn't have pain and recovered well.  

    hugs and Happy Sunday!  Anne

  • caedmon22
    caedmon22 Member Posts: 22

    3 Brachy Schedule

    Hi,

    What is the schedule for the internal radiation?  It seems like 3 times is the standard? If that is true, how are they scheduled?  I mean, is it every day for 3 days, or 3 weeks apart like the chemo normally is or???  Also, I'm seeing comments that it causes fatigue.  How long does that last?  Also, for those that had all chemo first, then had the brachy, did you get a few weeks reprieve after the chemo was finished? 

    Thanks in advance.  I'm sure I'll have more questions the closer I get to this part!

    Cindi

    hi cindi -- i had 25 rounds of pelvic, followed by 2 brachys, starting immediately. i went from external pelvic to the first brachy session -- which is the long one where they do all the prep. by then i was already in full-blown radiation fatigue. my experience with the brachy was that it knocked me on my keester for three days. i could barely peel myself off the bed. i also had a very hard time with the first appointment, but i think that was because it followed so closely on the pelvic rads and everything "down there" was tender. that first brachy was on a thursday. i was supposed to go in the following monday for the last one, but because i had such a hard time my rad onc pushed that one out to wednesday. by wednesday i was feeling much better. on his advice, i took two ativan and a vicodin, and going through the experience was fine. i still had 3 days of major exhaustion afterwards. but two weeks later i did an extended solo road trip, so general recovery was pretty fast for me. i didn't have chemo, though. only radiation. from what i've seen on other boards of folks who had brachy (but not external rads), they are usually scheduled a few days apart. most people didn't seem to have as much fatigue as i did. and not much problem with side effects. the words "piece of cake" came up quite a bit. i hope yours will be that easy too Smile.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    caedmon22 said:

    hi cindi -- i had 25 rounds of pelvic, followed by 2 brachys, starting immediately. i went from external pelvic to the first brachy session -- which is the long one where they do all the prep. by then i was already in full-blown radiation fatigue. my experience with the brachy was that it knocked me on my keester for three days. i could barely peel myself off the bed. i also had a very hard time with the first appointment, but i think that was because it followed so closely on the pelvic rads and everything "down there" was tender. that first brachy was on a thursday. i was supposed to go in the following monday for the last one, but because i had such a hard time my rad onc pushed that one out to wednesday. by wednesday i was feeling much better. on his advice, i took two ativan and a vicodin, and going through the experience was fine. i still had 3 days of major exhaustion afterwards. but two weeks later i did an extended solo road trip, so general recovery was pretty fast for me. i didn't have chemo, though. only radiation. from what i've seen on other boards of folks who had brachy (but not external rads), they are usually scheduled a few days apart. most people didn't seem to have as much fatigue as i did. and not much problem with side effects. the words "piece of cake" came up quite a bit. i hope yours will be that easy too Smile.

    Thanks Anne and Caedmon22 for

    Thanks Anne and Caedmon22 for your replies.

    Low energy seems to come with the territory regardless of the "poison"..... I mean medicine. .... ugh!

    I'm on my hardest weekly chemo impact day today. So, have done nothing but sleep or lay around under the TV.  I find it interesting that we just do it. And, we get through it to do it again. We really are strong women.  

    My meeting with the radiologist isn't until early November. I'll share what he tells me after that.

    Thanks for the hugs Anne!

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member

    Chris,I am on the slender

    Chris,

    I am on the slender side and my radiologist raised the issue of side effects from radiation because of this. 

    I will tell you I started by asking him why I even had to have radiation since 'the equipment' was gone?  He said it is targeted (which we have already heard) and for the brachy that cancer can come back in this area.  Ok, I am not sure of that, but I was doing everything I could to put this in the rearview mirror.

    He did talk about being smaller and how radiation would effect my digestive track.  I was completely freaked out about not being able to work with debilitating diahrea! I really was a wreck.  I did sit down with a dietician who had given me a powerpoint on how probiotics can help the digestive track during radiation.

    The study, seems barbaric actually, was about 60 women being treated with radiation for cervical cancer.  The ones who did NOT take probiotics were hospitalized with dehydration and had 'loose stool' in high numbers.  The comparison to the women who took probiotics and did not have these side effects were shocking.  I had been taking them before all this started and I really had very few side effects. 

    I also forced myself to eat protein daily to help the bone marrow in the pelvic area that was getting the radiation. (IMRT is targeted radiation.  They did do a CT for planning purposed of the IMRT and I always had to have an xray before each IMRT to match up the plan with how the body was that day).  I stayed away from highly processed soy, soy protien isolates, as the body treats that like estrogen and hormones cannot be used on my form of agressive cancer, UPSC.

    I shared the study with people I work with and one woman started taking them because of it.

    NoTimeForCancer, thank you!!!

    This is exactly the kind of feedback I was hoping for.  I started taking probiotics shortly after my hysterectomy.  It was suggested by my gyn/oncologist to help with the bloating/gas I was having, and I have continued with them.  The fact that you find they helped you with radiation is very reassuring.  I wish I had known this when my BF was going through radiation for prostate cancer.  It might have helped him, too.

    As far as protein goes, I am also very conscious of that, using a food diary now to make sure I eat enough calories/protein.  For me, right now, there is no such thing as too much. I am determined to keep my blood counts up during chemo...  I do not want any delays. I am grateful that for the most part, my appetite has remained and has made it easy to keep on eating regularly.  My gyn/oncologist jokingly told me that my job between my post/op appointment and radiation (other than dealing with chemo) was to "bulk up."  We both laughed.  Bulk is just not in my physical make up lol.

    I am really curious as to what they will be "targeting."  Areas where they removed the positive lymph nodes?  How do they make that decision when the only tumor was in the uterus and that's gone?  They must have some protocol for that.

    This is why I love the women on this board so much.  So much information and practical experience. You all rock!

    Chris

  • Editgrl
    Editgrl Member Posts: 903 Member
    Lou Ann M said:

    Hi, Chris

    I don't remember having a scan between , but i had what thery call a sandwich treatment, 3 chemo, radiation, and 3 more chemo..  i think they have very specific areas that the aim at  the radiologist does do a scan and then goes over it to plan exactly where his machine willmbe aimed.  They make a mold for you to lay on to keep you from moving and you are not supposedto move at all.  i think in my case they radiated the spots where the surgeon sliced and diced. to make sure they were clean. That area of me has remained cancer free.

    My cancer had spread out of the uterus into the cervics and 3 small spots behind no lymph node involvment, but the wash showed cancer cells.  Hugs and prayers, Lou Ann

     

     

    Hi, Lou Ann

    Thanks for the detailed info.  In some ways, I am more concerned with radiation than chemo.  I understand how the chemo works systemically.  It's just the idea of firing all that radiation into my body that kind of freaks me out.  I also saw the side effects that my BF went through during his radiation.  Truth be told, he did not take very good care of himself diet-wise during any of his treatment, and I can't help but think that had, and continues to have, a lot to do with how his body is handling the after effects.

    Hugs to you, Lou Ann.

    Chris

  • Sandy3185
    Sandy3185 Member Posts: 228

    Thanks Anne and Caedmon22 for

    Thanks Anne and Caedmon22 for your replies.

    Low energy seems to come with the territory regardless of the "poison"..... I mean medicine. .... ugh!

    I'm on my hardest weekly chemo impact day today. So, have done nothing but sleep or lay around under the TV.  I find it interesting that we just do it. And, we get through it to do it again. We really are strong women.  

    My meeting with the radiologist isn't until early November. I'll share what he tells me after that.

    Thanks for the hugs Anne!

    Cindi

    Brachytherapy

    It does seem like 3 sessions is the most common therapy. Mine were scheduled one week apart, so it only took 2 weeks. As I said before, I didn't experience any pain or discomfort and only minor fatigue and no diareah. It was the easiest part of my treatment! I was very unsure about doing any radiation. I finally decided that if the chemo, which is supposed to kill all the cancer, missed a few stronger cells, maybe the radiation would catch any that had stuck around. Not very scientific, but it made sense to me at the time. I'm still not sure I made the right decision and Dr Wenham was kind of on the fence about it when I pushed him although he did come down on the side of doing the brachy. I would ask him again Cindy as it will probably be a lot more uncomfortable for you.  Hope you recover quickly from your latest treatment. Sandy

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Sandy3185 said:

    Brachytherapy

    It does seem like 3 sessions is the most common therapy. Mine were scheduled one week apart, so it only took 2 weeks. As I said before, I didn't experience any pain or discomfort and only minor fatigue and no diareah. It was the easiest part of my treatment! I was very unsure about doing any radiation. I finally decided that if the chemo, which is supposed to kill all the cancer, missed a few stronger cells, maybe the radiation would catch any that had stuck around. Not very scientific, but it made sense to me at the time. I'm still not sure I made the right decision and Dr Wenham was kind of on the fence about it when I pushed him although he did come down on the side of doing the brachy. I would ask him again Cindy as it will probably be a lot more uncomfortable for you.  Hope you recover quickly from your latest treatment. Sandy

    Sandy

    Thanks. The decision to do or not is a hard one. If I didn't have my pre-existing issue (vulvadynia) I would not hesitate. Because I'm really afraid not to do it. I think I will talk to Dr. Fernandez first and see what he says. I don't have another appointment with Dr. Wenham until 2 months after the brachy.  When I asked Dr. Wenham about both chemo and brachy, his answer was we treat serous, seriously.  And that recurrence is most likely to hit the vaginal cuff first. That was before my surgery and I didn't push for more information. I wish we all had some black and white answers. But, we know that isn't possible!

    So, if I don't do it... Will I be constantly worried about a recurrence? And, if I do, do it.... Will I have to deal with discomfort for the rest of my life?  Anyway, I will continue to ponder this over the next 6 weeks.

    Glad to hear you didn't have issues though. That makes me hopeful that going forward with it, won't be too hard for the "normal" things.

    Hugs to all,

    Cindi

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Editgrl said:

    NoTimeForCancer, thank you!!!

    This is exactly the kind of feedback I was hoping for.  I started taking probiotics shortly after my hysterectomy.  It was suggested by my gyn/oncologist to help with the bloating/gas I was having, and I have continued with them.  The fact that you find they helped you with radiation is very reassuring.  I wish I had known this when my BF was going through radiation for prostate cancer.  It might have helped him, too.

    As far as protein goes, I am also very conscious of that, using a food diary now to make sure I eat enough calories/protein.  For me, right now, there is no such thing as too much. I am determined to keep my blood counts up during chemo...  I do not want any delays. I am grateful that for the most part, my appetite has remained and has made it easy to keep on eating regularly.  My gyn/oncologist jokingly told me that my job between my post/op appointment and radiation (other than dealing with chemo) was to "bulk up."  We both laughed.  Bulk is just not in my physical make up lol.

    I am really curious as to what they will be "targeting."  Areas where they removed the positive lymph nodes?  How do they make that decision when the only tumor was in the uterus and that's gone?  They must have some protocol for that.

    This is why I love the women on this board so much.  So much information and practical experience. You all rock!

    Chris

    Probiotics

    Hey Chris and No Time,

    I know nothing about probiotics except from TV commercials and yogurt (which I hate).  Is there a supplement that I could take? Or, what are you using? I would like to incorporate something to help with the stomach issues from chemo.   I do like frozen yougurt. Does that count?  Concern though because it has a lot of sugar.

    Chris, I'm still amazed at how well you are tolerating the chemo.  As tiny as you are, I would have expected it to be really hard for you. So glad it hasn't been. My appetite isn't all that great. And, the fatigue is high for two days each week. I'm still not sold that weekly is better!

    Take care,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member

    Probiotics

    Hey Chris and No Time,

    I know nothing about probiotics except from TV commercials and yogurt (which I hate).  Is there a supplement that I could take? Or, what are you using? I would like to incorporate something to help with the stomach issues from chemo.   I do like frozen yougurt. Does that count?  Concern though because it has a lot of sugar.

    Chris, I'm still amazed at how well you are tolerating the chemo.  As tiny as you are, I would have expected it to be really hard for you. So glad it hasn't been. My appetite isn't all that great. And, the fatigue is high for two days each week. I'm still not sold that weekly is better!

    Take care,

    Cindi

    The priobiotic

    The probiotic recommended to me by my GYN/Oncologist was Culturelle capsules.  Now, it only contains lactobacillus and inulin, but it seems to do the job.  I also have Pro Greens which has a wider range of probiotics along with a bunch of vegetable extracts that RoseyR has recommended in several of her posts to help with side effects of chemo.  However, I will tell you that I have a problem choking it down.

    It doesn't taste bad, but it doesn't taste good.  I have resorted to mixing it in a smoothie and I take it during the first few days of chemo. I don't know if that affects its effectiveness but it does make it more palatable.

    A friend with bladder cancer is taking acidophilus pearls and seems to be having good luck with them.

    I, too, am amazed at my reaction to the chemo and very grateful.  I hope my cancer cells are not as resiiient as I seem to be.

    Chris

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,081 Member

    Probiotics

    Hey Chris and No Time,

    I know nothing about probiotics except from TV commercials and yogurt (which I hate).  Is there a supplement that I could take? Or, what are you using? I would like to incorporate something to help with the stomach issues from chemo.   I do like frozen yougurt. Does that count?  Concern though because it has a lot of sugar.

    Chris, I'm still amazed at how well you are tolerating the chemo.  As tiny as you are, I would have expected it to be really hard for you. So glad it hasn't been. My appetite isn't all that great. And, the fatigue is high for two days each week. I'm still not sold that weekly is better!

    Take care,

    Cindi

    Cindi, not all yogurts are

    Cindi, not all yogurts are the same and the important thing in yogurt is the live and active culture - I don't think they can live in frozen state . 

    There are a million different manufacturers out there, I took Accuflora (Walmart - $10) and took it to my dietician to look at.  She was really impressed that it had lots of both kinds of little critters. 

    Chris, I will tell you what my chemo nurse when we first sat down before I started the chemo/radiation, and maybe you were told this too.  Because the radiation is targeted in your pelvis, where there is a lot of bone marrow, getting the last couple chemo's in might be difficult.  (I am not sure if you are having the "sandwich" treatment or not  - 3 chemo/radiation/3 chemo.)  For number 5 I did the blood work in advance and it was low but the morning of chemo it has popped up very nice thank you!  For number 6, again the numbers were low and I thought it would pop up again, it didn't.  It was devastating to me and my BFF.  We both left crying, we were so ready to be done.  It was delayed one week.

    I agree with you on radiation.  It COMPLETELY freaked me out.  I really had a problem wrapping my head around this.  For me, it brought on fatigue I had never experienced before.  I sat in my office just thinking how I had never felt like this before.  When I got home I usually crashed on the couch at 7 pm and dragged myself up to bed somehow. 

    I am betting most of us thought we could never make it, but you will and you will amaze yourself.  There may be a few little bumps along the way, but it is very doable!! 

  • Abbycat2
    Abbycat2 Member Posts: 644

    Sandy

    Thanks. The decision to do or not is a hard one. If I didn't have my pre-existing issue (vulvadynia) I would not hesitate. Because I'm really afraid not to do it. I think I will talk to Dr. Fernandez first and see what he says. I don't have another appointment with Dr. Wenham until 2 months after the brachy.  When I asked Dr. Wenham about both chemo and brachy, his answer was we treat serous, seriously.  And that recurrence is most likely to hit the vaginal cuff first. That was before my surgery and I didn't push for more information. I wish we all had some black and white answers. But, we know that isn't possible!

    So, if I don't do it... Will I be constantly worried about a recurrence? And, if I do, do it.... Will I have to deal with discomfort for the rest of my life?  Anyway, I will continue to ponder this over the next 6 weeks.

    Glad to hear you didn't have issues though. That makes me hopeful that going forward with it, won't be too hard for the "normal" things.

    Hugs to all,

    Cindi

    Brachytherapy and UPSC

    My gyn onc told me that I had clean margins with all that was removed with my hysterectomy and that my chance of eventually developing cancer on the vaginal cuff was small. He said that brachytherapy reduces the chance of a recurrence on the vaginal cuff but does not reduce/prevent a distant recurrence. With UPSC, a distant recurrence is more likely, worse for stage 3 and 4 women but not unheard of with stage 1 or 2. I had a positive wash so I wouldn't be surprised if the cancer spreads outside of the pelvis.