Help Wanted
I've spent a ton of time on-line looking for as much info on colon/rectum cancer as possible. The past 2 nights, I've been up til 1:00 and 2:00 in the morning. I'm devouring books from the library as well. I also have been looking for a place to share and read stories from people who are fighting this fight. Last night I found a blog from this woman my age with two girls who beat colon cancer. I'm hooked reading her blog. I started with her first (oldest) blog and read forward. She describes in detail the good, bad, and ugly of radiation and chemo but keeps such an awesome sense of humor throughout. I read some of her entries to mom this afternoon. It was nice to hear from someone who's walked Mom's road. She's had the same side effects, experiences, and feelings as Mom from the mouth sores and weird taste buds to crying spells and problems with pic lines. As I said in my last blog, this past weekend was horrible for mom. Now, mom is mainly experiencing extreme fatigue (total exhaustion). In this woman's blog, she comments on fatigue from chemo. She says that she can't believe she ever complained about being tired or exhausted pre-chemo. There's nothing like the exhaustion caused by chemo. Bad days are really bad and this woman says that good days are when you make it out of bed. Mom and I laughed together at some of her posts. One is if you're constipated, schedule a colonoscopy and have them send you the bill beforehand, You'll Shit! She's so funny, a total inspiration, and cancer free! check out her blog; http://michelepeters.blogspot.com/
I also found a great place to share Mom's story, ask questions, and give and receive support from others fighting colon cancer. I'm now part of the colon club, my username is MomsCancer (It was after midnight and I was all out of creativity) I copied and pasted my post and comments;
by momsCancer on Tue May 27, 2008 1:06 am
Mom is starting her 3rd week of chemo and radiation. She has Stage 2 Anal Cancer. She has radiation 5 days a week and her chemo drugs are 5-FU and Mitomycin-C. She takes 1 through an iv in treatment room, the other through a pic line pump over 5 days. I'm doing my best to care for her but not sure how much it helps. The doc seemed so optimistic in the beginning saying that life should continue as normal as possible. He said she should continue working and all normal activities. She struggles getting out of bed on most days much less doing anything resembling normal life. She's had one side effect right after another. After first treatment, she had intense nausea and fatigue. She felt like she had the flu 100 times over. Her neck and shoulders ached, her hips hurt, and she just cried. At the end of the first week, she ran a fever and felt a sore throat coming on. The middle of the second week, she had full blown mouth sores. She couldn't drink, eat, or talk. It hurt to cry, but she couldn't keep from that. Her white blood cell count plummeted to 0.8 so they put her on antibiotics. Now she has burning when she pees and bumps in folds of vagina that hurt bad. The doc says the bumps will be on-going until radiation ends. Food and water tastes bad. She says plain water tastes like salt water and she's suppose to drink 2 to 3 quarts each day. Continue normal life, yea right! Others are saying how important it is to keep a positive attitude, that seems impossible most of the time as well. It's only been 2 weeks, nowhere near the end treatment.
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;http://www.onecrazeemommy.blogspot.com/I should change the name to one crazee daughter, I think.
momsCancer
Comment 1: Re: Anything but Normal
by NWgirl on Tue May 27, 2008 2:11 pm
For what it's worth, I found radiation to be the most difficult part of my treatment so far. I had no external skin issues, but urinating was sooooo painful. I cried every time I had to go to the bathroom. On a scale of 1-10, peeing was a 9 - each and every time. And my issues started about the 3rd week too. Unfortunately, they continued until almost 3 weeks AFTER radiation was done. But it did get a little better every day - once radiation stopped. For weeks I couldn't sleep in my bed - I had to sleep in my recliner, because lying flat caused to much pain. I pretty much lived in my Lazy-Boy. The 5FU caused the bottoms of my feet to peel off and it hurt to walk. Near the end of radiation I got a fever and they discontinued the 5FU for the last 5 days of treatment. The last week I couldn't even drive myself to treatments. For chemo I have always driven myself to/from all treatments. Every time I left the doctors office I was stopping by the pharmacy for another prescription - I thought it would never end. But it did end - and now almost all of the radiation issues have cleared up. It just seems like a distant memory - or nightmare - at this point, even though its only been a couple of months since I finished.As I would tell my husband, if it was just one or two things I could deal with it - but it was just one thing on top of another and another and another. After awhile you kind of just lose it. Positive attitude? Yeah right. Save the cheer leaders for the football game. I say just do what you have to do to get through it. Know that it will end (not soon enough - but it will end) and that radiation is an important part of killing off the cancer cells.
Belle DX 10/07 Stage III Colorectal Cancer 20+ nodes affected Surgery 11/07 Currently going thru chemo; Oxi, 5FU & radiation 44 Years Old
NWgirl
Comment 2: Re: Anything but Normal
by bradyr on Tue May 27, 2008 4:31 pm
I’m so sorry things are going so hard right now.I only had colon cancer, not Anal cancer, and clearly the treatment is worse for anal cancer. But I can tell you that they are hard to start with, particularly if you add radiation to the chemo. Mine wasn’t as hard as your mothers, but It was pretty bad. It was so bad I wanted to quit and just have them let me die.But, she can get thru this. It isn’t going to be easy for either of you, but it will get easier over the next few weeks. I will save you the cheerleader stuff. I don’t believe in that either. I think we all have the strength to do what we need to do to get thru this. As for as a positive attitude, it helped me to have my wife keep a journal. Over the first weeks, it was slow, but we could look back at the journal and see that things were getting better, that I was tolerating the treatment a little better each time. That helped me get thru things. My second round of chemo didn’t start of much better, but I’m now half way thur it and it’s getting better. I’m not some superman. I’m not some always positive person. I’m just a regular person like you and your mother. I made it thru it because as you point out there really wasn’t any alternative. But It did get better and I did make it thru it once and now I’m going to make it thru it a second time.Your mother is only stage 2 and although this treatment is hard, it’s very possible that her cancer will respond to this aggressive treatment and be gone. But there is going to be a month or so here that will feel like the worse time of her (and your life).As far as any help with the specific symptoms, talk to the doctor about the nausea. There are additional medications they can provide, such as decadron that can control this. It make take a few rounds to get the right mix as everyone responds slightly differently. But a lot of us took 5fu and the doctors found the right mix so that it wasn’t so bad. I also assume they are providing some kind of pain killer. If not, you shouldn’t be shy to ask for something right now. As far as the radiation, talk to the radiation nurses and see about clear aloe or other creams that can be applied. I had radiation on my arm and my underarm got as raw as you describe, to the point it was almost bloody.I don’t know If your mother has any restrictions on sugar, but try adding crystal light to the water. Also, try various bottled waters, it’s amazing, but while on chemo, I could taste the difference in all the bottled waters. Some were nasty, I found some weren’t as bad. I’m sure you know that you are really helping your mother here. The two of you will get thru this.
bradyr DX Stage IV 2/07 mets liver/bone/brain/spleen colon resection radiation for bone mets folfox4 + Avastin 6m / Xeloda for 4m Gamma Knife on brain lesion 1/08 Now on FolFiri 6 of 12 CEA 31 down from 43 three weeks ago (0.8 at lowest 49 at peak)
bradyr
Comment 3: Re: Anything but Normal
by pearlgirl on Tue May 27, 2008 5:51 pm
It's possible that the antibiotics may have given her a yeast infection. Check this out with her doctor. Every time I take antibiotics, I have to get Diflucan to head off a yeast infection.
Comment 4: Re: Anything but Normal
by NWgirl on Tue May 27, 2008 10:53 pm
One of the first side effects I had from the radiation was extreme itching. I called my doc on the weekend so he could call in a prescription for Diflucan, which he did. Sadly, it wasn't a yeast infection and it continued for weeks. Insane itching. I tried various creams but all that really helped was keeping the area as clean and dry as possible. Sometimes I'd take showers in the middle of the night in an attempt to get some relief. It was so bad I even got a prescription to help me sleep at night through the itching. Thankfully like most of the other side effects, it finally went away. I just hope the cancer went away with it!
Check out the forum; http://www.colonclub.com/ Go to Colon Talk at top of home page and as I said my username is MomsCancer.
Mom goes for blood work tomorrow. I hope her cell count is rebounding, she needs some good news.
I also found a great place to share Mom's story, ask questions, and give and receive support from others fighting colon cancer. I'm now part of the colon club, my username is MomsCancer (It was after midnight and I was all out of creativity) I copied and pasted my post and comments;
by momsCancer on Tue May 27, 2008 1:06 am
Mom is starting her 3rd week of chemo and radiation. She has Stage 2 Anal Cancer. She has radiation 5 days a week and her chemo drugs are 5-FU and Mitomycin-C. She takes 1 through an iv in treatment room, the other through a pic line pump over 5 days. I'm doing my best to care for her but not sure how much it helps. The doc seemed so optimistic in the beginning saying that life should continue as normal as possible. He said she should continue working and all normal activities. She struggles getting out of bed on most days much less doing anything resembling normal life. She's had one side effect right after another. After first treatment, she had intense nausea and fatigue. She felt like she had the flu 100 times over. Her neck and shoulders ached, her hips hurt, and she just cried. At the end of the first week, she ran a fever and felt a sore throat coming on. The middle of the second week, she had full blown mouth sores. She couldn't drink, eat, or talk. It hurt to cry, but she couldn't keep from that. Her white blood cell count plummeted to 0.8 so they put her on antibiotics. Now she has burning when she pees and bumps in folds of vagina that hurt bad. The doc says the bumps will be on-going until radiation ends. Food and water tastes bad. She says plain water tastes like salt water and she's suppose to drink 2 to 3 quarts each day. Continue normal life, yea right! Others are saying how important it is to keep a positive attitude, that seems impossible most of the time as well. It's only been 2 weeks, nowhere near the end treatment.
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;http://www.onecrazeemommy.blogspot.com/I should change the name to one crazee daughter, I think.
momsCancer
Comment 1: Re: Anything but Normal
by NWgirl on Tue May 27, 2008 2:11 pm
For what it's worth, I found radiation to be the most difficult part of my treatment so far. I had no external skin issues, but urinating was sooooo painful. I cried every time I had to go to the bathroom. On a scale of 1-10, peeing was a 9 - each and every time. And my issues started about the 3rd week too. Unfortunately, they continued until almost 3 weeks AFTER radiation was done. But it did get a little better every day - once radiation stopped. For weeks I couldn't sleep in my bed - I had to sleep in my recliner, because lying flat caused to much pain. I pretty much lived in my Lazy-Boy. The 5FU caused the bottoms of my feet to peel off and it hurt to walk. Near the end of radiation I got a fever and they discontinued the 5FU for the last 5 days of treatment. The last week I couldn't even drive myself to treatments. For chemo I have always driven myself to/from all treatments. Every time I left the doctors office I was stopping by the pharmacy for another prescription - I thought it would never end. But it did end - and now almost all of the radiation issues have cleared up. It just seems like a distant memory - or nightmare - at this point, even though its only been a couple of months since I finished.As I would tell my husband, if it was just one or two things I could deal with it - but it was just one thing on top of another and another and another. After awhile you kind of just lose it. Positive attitude? Yeah right. Save the cheer leaders for the football game. I say just do what you have to do to get through it. Know that it will end (not soon enough - but it will end) and that radiation is an important part of killing off the cancer cells.
Belle DX 10/07 Stage III Colorectal Cancer 20+ nodes affected Surgery 11/07 Currently going thru chemo; Oxi, 5FU & radiation 44 Years Old
NWgirl
Comment 2: Re: Anything but Normal
by bradyr on Tue May 27, 2008 4:31 pm
I’m so sorry things are going so hard right now.I only had colon cancer, not Anal cancer, and clearly the treatment is worse for anal cancer. But I can tell you that they are hard to start with, particularly if you add radiation to the chemo. Mine wasn’t as hard as your mothers, but It was pretty bad. It was so bad I wanted to quit and just have them let me die.But, she can get thru this. It isn’t going to be easy for either of you, but it will get easier over the next few weeks. I will save you the cheerleader stuff. I don’t believe in that either. I think we all have the strength to do what we need to do to get thru this. As for as a positive attitude, it helped me to have my wife keep a journal. Over the first weeks, it was slow, but we could look back at the journal and see that things were getting better, that I was tolerating the treatment a little better each time. That helped me get thru things. My second round of chemo didn’t start of much better, but I’m now half way thur it and it’s getting better. I’m not some superman. I’m not some always positive person. I’m just a regular person like you and your mother. I made it thru it because as you point out there really wasn’t any alternative. But It did get better and I did make it thru it once and now I’m going to make it thru it a second time.Your mother is only stage 2 and although this treatment is hard, it’s very possible that her cancer will respond to this aggressive treatment and be gone. But there is going to be a month or so here that will feel like the worse time of her (and your life).As far as any help with the specific symptoms, talk to the doctor about the nausea. There are additional medications they can provide, such as decadron that can control this. It make take a few rounds to get the right mix as everyone responds slightly differently. But a lot of us took 5fu and the doctors found the right mix so that it wasn’t so bad. I also assume they are providing some kind of pain killer. If not, you shouldn’t be shy to ask for something right now. As far as the radiation, talk to the radiation nurses and see about clear aloe or other creams that can be applied. I had radiation on my arm and my underarm got as raw as you describe, to the point it was almost bloody.I don’t know If your mother has any restrictions on sugar, but try adding crystal light to the water. Also, try various bottled waters, it’s amazing, but while on chemo, I could taste the difference in all the bottled waters. Some were nasty, I found some weren’t as bad. I’m sure you know that you are really helping your mother here. The two of you will get thru this.
bradyr DX Stage IV 2/07 mets liver/bone/brain/spleen colon resection radiation for bone mets folfox4 + Avastin 6m / Xeloda for 4m Gamma Knife on brain lesion 1/08 Now on FolFiri 6 of 12 CEA 31 down from 43 three weeks ago (0.8 at lowest 49 at peak)
bradyr
Comment 3: Re: Anything but Normal
by pearlgirl on Tue May 27, 2008 5:51 pm
It's possible that the antibiotics may have given her a yeast infection. Check this out with her doctor. Every time I take antibiotics, I have to get Diflucan to head off a yeast infection.
Comment 4: Re: Anything but Normal
by NWgirl on Tue May 27, 2008 10:53 pm
One of the first side effects I had from the radiation was extreme itching. I called my doc on the weekend so he could call in a prescription for Diflucan, which he did. Sadly, it wasn't a yeast infection and it continued for weeks. Insane itching. I tried various creams but all that really helped was keeping the area as clean and dry as possible. Sometimes I'd take showers in the middle of the night in an attempt to get some relief. It was so bad I even got a prescription to help me sleep at night through the itching. Thankfully like most of the other side effects, it finally went away. I just hope the cancer went away with it!
Check out the forum; http://www.colonclub.com/ Go to Colon Talk at top of home page and as I said my username is MomsCancer.
Mom goes for blood work tomorrow. I hope her cell count is rebounding, she needs some good news.
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