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Bill158
Posts: 19
Joined: Apr 2013

 

Hello to all of you on the site-I just found the site 2 days ago, and have been reading all weekend, and I am so grateful for this site being here.

 

 I am a 55 year old physician, and I just found out 2 days ago I will be starting radiation and chemotherapy for stage III anal cancer on April 29th.  I went to see my doctor December 2011 for something near my anus that I was worried about and knew wasn’t right.  He said it was a hemorrhoid, and gave me some suppositories for it and since I hadn’t had my screening colonoscopy yet (I know better), he referred me to get that done.  The doc doing my colonoscopy said I had a hemorrhoid too, and he didn’t do hemorrhoids.  I figured I was just over reacting to the thing on my butt, and since I couldn’t get as close as they could, I was ok with what they told me.  Over the next year the thing just got bigger, itched, bled, and was driving me nuts, and nothing was making it better, so I went back to my primary doc, and he decided to take it off in his office in January this year.   The 2nd morning after he removed it I woke up to what looked like a crime scene in my bed, and the area had bled during the night.  A week later I went in for follow up and he told me then that it was squamous cell cancer, but it was well differentiated, and no cancer at the base, so it looked like he got all of it.  He also said there were a couple small bumps in the area, and he wanted me to see a surgeon.  The surgeon took a quick look, and I thought he was going to say he could buzz those other ones off and call it good—he said he wanted to talk to the Oncologists, and see if maybe radiation would be the best way to go.  I was confused then—I thought that would be over kill.  I admit I didn’t know what I was dealing with.  He said he would call me after he talked to the oncologists.  Next thing I know someone else calls to tell me that I have a PET/CT scan scheduled for last Thursday (today is Sunday), and that I was going to see the radiation oncologist, and the hem/onc after that on Friday.  I was wondering what all the fuss was about. 

 

The rad-onc met with me and said I had stage III cancer, as the PET scan showed nodes lighting up in my pelvis, but they weren’t enlarged, and that I would need to start radiation 5 days a week for 5-6 weeks, and maybe chemotherapy depending on what the heme/onc recommended.  I got tattooed while a slurry of appointments were being made for me, and I was handed a few packets of info.  I have to get a PIC line put in, have ANOTHER colonoscopy, have a radiation planning appointment, and start chemo and rad April 29th.  I am working Monday night, and have the colonoscopy scheduled Tuesday afternoon, so I am trying to figure out when to drink the two bottles of colon blast and not be soiling my scrubs at work, or having to pull off the highway on the trip home and have a BM.

 

Friday afternoon I headed down the road 200 miles to work feeling very surreal, and kind of in a fog. Before I went to the hospital I searched on the internet anything I could find about anal cancer, and then I started to realize what all the fuss was about.  I haven’t had a chance to talk to my family, kids and I don’t want to talk to co-workers about this yet.  My girlfriend is the only one who knows so far.   I am a little freaked out---wondering if I am going to be able to work through all this, if my girlfriend is up for this, if my insurance is up for this…I never thought this would happen.  I never thought I would be posting to a support website.  It kind of feels like a bad dream at times

 

I appreciate this website, and any advice.  bill

 

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I am SO sorry you have gotten this diagnosis and that you had to seek out this site.  However, this is a great place for support, so I'm glad you've found us.  We have never had a member who is a physician (atleast that I know of), so let me just say first off, we put a lot of information on here that is based on our own personal experiences, not necessarily on information out of medical journals--or our doctor's mouths!  Some of the best information on getting through this treatment and beating this cancer comes from those who have been there, done that.  Sometimes battling the side effects is a trial an error experience, but we all try to offer suggestions on what has worked for us.  Please forgive me for saying this, but sometimes the doctors just don't have the answers.  That said, we are here to help you and get you through this.

Your story is familiar to many of us.  My internist misdiagnosed my cancer as a hemorrhoid also.  And, like you, I had been putting off that dreaded age-50 screening colonoscopy.  My bad!  My internist scolded me for putting it off until I was almost 55, so she said see a colorectal surgeon who can do the scope and take care of that "hemorrhoid."  I went for my meet and greet with the CR doctor and, after taking my hx and hearing my symptoms, she decided to do an anoscope on me that day.  She immediately told me she was 99% sure I had cancer.  The rest is history.  But here I am, almost 5 years later, doing very well.  That is my hope for you and everyone else on this board.  Going back to misdiagnosis, it is SO common with this cancer.  Many of our stories began the same way as yours.  I think lack of awareness in both the medical community and the general population contributes to this.  We obviously do not get the attention that breast cancer gets.  I guess no one wants to think about anuses.  And with less than 7,000 cases predicted in 2013, the numbers for awareness just aren't there.

The following are a few good websites that I can recommend to you for information and additional support.

www.NCCN.org  As a physician, you will find this site very informative and you'll probably understand much more of the info there than most of us.  It outlines treatment and follow-up guidelines for anal cancer.  You'll have to register first, but that will give you access to all of this information.

www.analcancerfoundation.org  There are lots of good links to other websites here. 

www.analcancerhelp.info  This website was started by a virtual friend of mine who is a survivor of anal cancer.  There's lots of good info here too.

www.rare-cancer.org  This is a forum-style site where you'll find threads on many topics with helpful information.

As for prepping for a colonoscopy while being on the job, I can't help you there, only wish you the best.  When I prep for those things, I might as well camp out in the bathroom.  I would definitely suggest having a couple changes of clothes with you.

I was not employed during my treatment, so I can't answer your question about working through this.  I know many people do, at least until towards the end of treatment, when the side effects become cumulative.  Also, I urge people to take the pain meds prescribed, which might impair you and prevent you from working.  However, keeping the pain at bay is important.  I did not do that and have regretted it many times.  I took only minimal pain meds so I could drive myself to rad treatment every day.  I DO NOT recommend that!

As a physician, I'm sure you are aware of the importance of staying well-hydrated, so plenty of fluids are important.  Diarrhea is a common side-effect, so replacing fluids lost is critical.

Okay, I won't bombard you with anymore info at this point.  I hope you'll come on here anytime you need some information or support.  Again, we are here for you.  It won't be a fun time, but you will get through it, as all of us have.  Let us know what you need from us and we'll do our best to help.  I wish you all the best!

Barb5454's picture
Barb5454
Posts: 78
Joined: Feb 2013

I'm so sorry for our diagnosis. Unfortunatley it is all too familiar. My doctor treated me for a so called hemrrohoid. I am unemployed and no way of paying of a colonoscopy (I'm 54). I ended up having one anyway and viola' cancer. In fact my doctor said, "how did you know". So I went through the chemo and radiation and I'm 4 months post treatment.

I do understand when you wonder about your girl friend. I have a boy friend and I freaked when I got the diagnosis and wondered if he would be able to handle it. I wondered about my kids too. Well, they all were extremely supportive. My boyfriend has a hard time handling issues, but he came through with flying colors and is still supportive. So I'm sure your girlfriend, family and friends will be supporitve as well. Just let them be there for you.

Again, I am unemployed so dealing with the wonderful colon "drink" while you are at work is something I don't know. I do know you are a doctor but would you be able to take the night off? Probably a dumb question.

Well, this site is awesome. I'm a bit new myself and everyone here is wonderful! I don't know what I would do without them. Everytime I have a question or concern someone is always there to help.

Hang in there!

 

Phoebesnow
Posts: 450
Joined: Apr 2011

I am very sorry to hear of your diagnosis.  

 

I am using magnesium citrate for prep.  This would not interfere with your work.  You do not have to take the ducolax midday.  I  start eating lighter a few days before.  Follow the low residue diet.  Believe me so much easier and controllable.

 

I wouldn't work unless I had a desk job.  

7243
Posts: 223
Joined: Feb 2011

I'm sorry ur here but glad u have us as support.  We can hear it all ... Hang in there.  Wishing you strength.  Be sure you get to a cancer center familiar with anal cancer.  It is particularly important that your rad Onc is skilled at treatment planning for anal cancer ESP if using IMRT and I believe u want IMRT. Must be skilled in order to cover the area and decrease likelihood of "marginal miss".   

A big supportive hug to u .... 

mxperry220
Posts: 365
Joined: Mar 2011

I felt the same as you when the doctors told me I had anal cancer.  I felt like I was in a fog and it was not real as I had never really been critically sick a day in my life.  I was 58 years old at the time of diagnosis.  Everything was on an accelerated pace with all the tests and doctors appointments before treatment.  That was the longest most stressful two weeks in my life.  Once I started the treatments everything became routine.  I did not sleep for those two weeks even though the doctors presribed sleeping medications.  Nothing worked.  Once treatments started I looked upon them as a job as I am retired.  I was diagnosed in November 2008 and finished treatments in January 2009.  I see my colorectal surgeon for my annual check up next week.  So far I am NED. 

Additionally, the colon prep instructions for me was to take the pills and drink the gatorade around 4:00 P.M.  The "cleanout" process lasted about 3-4 hours.  By 8:00 P.M. the bathroom "urge" subsided. 

Hope this helps.

Mike

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

Bill,

I'm glad you found this site, but of course I and the others wish you never needed to in the first place. Martha has provided a lot of info and links which I think you will find helpful.  I think many of us were in the same "fog" when we first were told we had anal cancer.  I was diagonsed two weeks after Farrah Fawcett died of anal cancer.  I remember listening to the news about Farrah and wondering, "anal cancer...what the heck". Ironically I learned much more than I ever thought I needed to a few short weeks later.

 

I was also Stage III with pelvic lymph node involvement. I did not work during treatment.  I had a high pressure job requiring a lot of hours and a lot of stress. But I also went out of state for treatment to MD Anderson in Houston, so working was not an option.  Looking back, I think I might have been able to work the first week or so, but after that no way.  The side effects of chemo and radiation on bowel movements, energy level, etc. would have been too much to combine with working.

It will be a very vigorous and hectic 6 weeks. It's not easy by any means, but it is doable and there is light at the end of the tunnel.  As you probably know, the effects of chemo and radiation are cumulative, so it gets harder toward the end of treatment. 

I trust that you are being treated by doctors that are familar with anal cancer treatment.  Like many, I was mis-diagonosed early on (they told me I had rectal cancer and were going to treat it very differently than anal cancer.  They even planned on doing a ilestomy which turned out I did not need. Long story short, I was not pleased with my local doctors so we packed it up and went to Houston, which was a very good decision.

There are many people here who can provide you with support a long the way.  I wish you the very best and pray that you will have a healing journey to recovery.

Liz

jcruz
Posts: 257
Joined: Jan 2013

Bill

I lived in that fog for months.  I didn't spend much time researching after my initial diagnosis and I didn't spend much time on this site until after my treatment was over - I was just so freaked out, definitely hanging on by a thread.  It might have been helpful for me to be here sooner but I didn't think I could handle any more info.  I was so fortunate to not be mis-diagnosed.  My primary care dr. and the gastroenterologist both jumped right on the possibility of cancer and not hemorrhoids.  I was treated in my hometown, didn't even really consider going elsewhere.  I'm really glad I stayed home with my friends surrounding me.  I didn't work for 7 months and have just been back at work part-time for the last 6 weeks.  It's really hard.  I don't think I could have worked during treatment - I was knocked flat by the chemo the day after my treatment began in September and didn't feel anything close to normal until maybe February.  I had 7 weeks of radiation and the 2 rounds of chemo.  I also had prior to treatment a surgery for an unrelated (maybe? I think it was somewhat related) gyno problem.

I'm so sorry that you're going through this.  I thought the treatment was both hellish and bearable at the same time.  And I just lived it one day at a time. 

We are all here for each other.  Wishing you the best.

 

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

I am 2 weeks out of treatment for stage IIIB. 

There are a lot of different experiences/side effects you will find on this site and it has been good for me to keep reading (ableit sometimes with one eye covered!). 

As far as work goes, I immediately went to "light duty" which meant a boring desk job.  My onc said max 6 hours a day, I was disappointed in that but found that I would not have been able to do any more after treatment started and even now sometimes can't make it to my 6 hours due to fatigue.   

As others have said, it is a brutal 6 weeks but it is doable.

I wish you luck and better health in your journey!

Kris

Lorikat's picture
Lorikat
Posts: 562
Joined: Jul 2011

Ok guys!  I DID have my colonoscopies right on time...  I was only a couple years out from a totally CLEAN colonoscopy when I was discovered to have anal cancer..  It was large and had been growing for a while.  Wa it missed? Whom knows but I'm 18 months NED!

sephie's picture
sephie
Posts: 541
Joined: Apr 2009

hey,  i had had colonoscopy Nov. 2008 and was complaining of bleeding , pain, etc with a bubble on outside of anus...colonoscopy came back clean and all ok ....diagnosed correctly march 2009 just 3.5 months later....yes, it was definitely missed by the scope.....shame on my procyologist for not knowing what that ulcer was and biopsying it at time  of colonoscopy...... most of us are misdiagnosed.....lack of info.....   hugs  sephie

jcruz
Posts: 257
Joined: Jan 2013

Me too.  I've had 2 since I turned 50.  I have a brother who's a colon cancer survivor so all of us sibs are on the 5 year plan fo colonscopies.  I had one in 2010 and was diagnosed with anal cancer (a 5 cm tumor) in July 2012 so I don't think it was missed.  Who knows?  And what counts now is NED.

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry that you have to go through this, but it is good thst you found this site. Your journey sounds sadly familiar. I was misdiagnosed for years by a series of specialists who were supposedly the best in their field in this state. Seems that something in plain sight would be easier to diagnose.

I trust that you have found a good cancer hospital? It matters, as you know. I am 2 years post treament for stage 2. The treatment was not nearly as bad as I had anticipated, but it is no day at the beach. As a doctor, you know that no 2 patients respond in exactly the same way.

As far as work goes, I would say that I could not have worked after the second week. I think it would be ideal if you could take a couple of months leave of absence. You need to take care of yourself now.

You will be in my prayers. You can do this! There are many here who can Help you as you go through this. All will be well. All will be well.

Bill158
Posts: 19
Joined: Apr 2013

Thanks to everyone for all your comments--this all really helps.  I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions.  The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon.  Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast. 

I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them.   Any thoughts on this part?

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I'm glad that your director is going to adjust your schedule while you are in treatment.  While the chemo/rad only lasts for 6 weeks, it can cause a myriad of side effects.  I had extreme fatigue that began almost immediately.  Soon, other side effects kicked in, including diarrhea, thrush and lack of appetite.  Of course, everyone is different and my hope is that you will have minimal side effects.  Some can certainly be managed better than others.

As for telling family, I don't have any kids, so that wasn't an issue for me, so I can't give you any advice about that.  However, my mother was 83 years old at the time of my diagnosis and I knew she couldn't handle hearing such news, so I didn't tell her until I was a couple of months out of treatment, which was totally doable since she lives over 600 miles from me.  I guess we all have to handle our own situations in whatever way we think is best.  Some kids can probably handle things like this better than others, I just don't know.

Good luck on your scope today.  I hope all goes well.  Enjoy the rest of your week as you count down the days until you begin treatment.  I found the waiting for things to get going to be the worst and was actually relieved when treatment began.  You will get through this and we'll all be here for you any time you need us!  Best wishes! 

eihtak
Posts: 868
Joined: Oct 2011

I am sorry to have to welcome anyone to this site, yet glad we have a place like this. I am 2yrs post treatment for Stage3b and doing great. I am 54yrs old and have 5 children, now 20-26 yrs old and 6 gransons under 5yrs!!!  At the time of diagnosis one of my daughters had just started college away from home, one was pregnant with no daddy in the picture, one was pregnant with the daddy deployed in afganistan and a two yr old at home, well.....you get the pic, a lot going on. Oh, and my husband had just undergone a stem cell transplant for multiple myeloma (later to have a bone marrow transplant). What I'm getting at is, they all had "life" happening yet when I told them, they did not stop what they were doing but did it better. The strength that is gained through a cancer experience is not just in relation to the "patient" but so much more in the ones we love, (at least it was in my family). They were already close, but became closer, they became more aware of what was really important in life, and our family now is thriving like never before!! Friends and teachers helped if any school issues came up, but none really did, employers were helpful with work schedules for those working. I know I was blessed and not everyone is so lucky to have the help that I did with my family, but don't doubt their strength in handling this, talk to them with confidence that you will be well soon, but need to just get through this difficult time.

I will have you and your family in my thoughts and prayers.

Marynb
Posts: 1134
Joined: Aug 2012

Bill, i was diagnosed the night before Thanksgiving and my daughter, who was 20 at the time, was literally on a train on her way home from college. As a divorced mom, I raised her alone and it was just the two of us. I had to think fast and I made the decision not to tell her until I had complete information and was about to start treatment. I made the calculation that she would be able to go back to school and finish her semester by the time they were ready to start treatment. We celebrated Thanksgiving and she went back on the train to college. Ironically, on the night she was on her way home for Christmas, I was admitted to the hospital after a complication . I begged them to release me before sunrise so I could tell her before she found out from someone else. I did make it home and when I told her she was completely overwhelmed and very hurt that I had chosen to leave her out. I am not sure whether she has forgiven me to this day. She felt that she should have been the first to know, not the last to know, and could not understand why I didn't want her with me during treatment. I persuaded her that I needed her to go back to college and study hard while I went through treatment. She did go back, but was very reluctant and hurt. i kept up a good act when I spoke to her on the phone. I did not want her to see me suffer.
I don't know if I would do things differently if I could go back. I hope that someday she understands that my decisions were guided by love for her.

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

I didn't tell anyone for 7-10 days (I did get on this site however).  It was a lonely first week.  I did not tell anyone because I did not have the answers to the questions they were going to ask, I did not have the answers to my own questions!

I raised my boys alone, we are a tight knit, trusting, honest crew and normally share information accordingly.  I felt bad keeping this from them but when I was able to sit down with at least some answers for them, I received the response I expected which was 100% love and support.  My oldest is a cancer survivor himself, he lives with me and probably always will due to the type of treatment he received "back in the day".  My youngest has a very busy life with a wife, 2 kids, job and school but he is not too busy to call me or stop by daily which has been terrific.  Although it is not a secret I would have ever even considered keeping from them, I am glad I waited a little bit and at the same time glad everything is out in the open now.  You will know when the time is right and I'm sure your kids will respond with caring concern.

One day at a time, one foot in front of the other!   

pializ
Posts: 284
Joined: Nov 2012

Hi Bill, I am sorry that you have found it necessary to find this support group, & I am sure you are still reeling from the diagnosis. I had wanted to wait until I had my diagnosis firmed up hefore telling her, but circumstances meant I had to tell her even before my biopsy. However, although she was already und3r considerable pressure already, she would not have thanked me for not telling her. But you know your own children, & use that knowledge to determine whether & when to tell. I completed my treatment on 25th January for s5age 3 anal cancer, & have just had my first follow up examination under anaesthetic yesterday. Although the treatment is gruelling, I tolerated it fairly well. However, I would have been unable to work during treatment. I was ok for first couple of days, but then the fatigue kicked in big time, and I would nod off mid conversation (according to my daughter). I still struggle with fatigue, but that was my main symptom prior to diagnosis anyway. I am noticing improvement though & am getting there bit by bit & able to eat most of what I could before treatment. I looked at what h3lped people during treatment, & shopped before trea5ment began. I wlso followed a low fibre diet which helped. I did try some cream, but did not find it helpful for my burns, hut used a portable bidet and salt water. Whether due to that or not, although I burned, it was not as severe as others I have read about.  I was off painkillers a couple of days after treatment ended, and never needed to ta more than co codamol. If you have any questions, I'm sure there are enough of us male & female to chip in. Remember, this treatment is harsh, but doable,  and is for a relatively short duration. Good luck Bill, Regards, Liz

jcruz
Posts: 257
Joined: Jan 2013

I was worried about how and when to tell my daughter who was 27 when I was diagnosed.  I'm in California and she had been back East for college and work for a number of years.  She's been back in Calif. the last two years attending grad school but last summer when I got my diagnosis she was in Brooklyn with her boyfriend and was on her way to Amsterdam for a language course.  We wouldn't see each other for several months.  I felt I had to tell her - we're very close.  It was hard telling her over the phone.  She cried so much she clogged up her phone and she couldn't hear me.  I was so glad her boyfriend was there with her.  She went off to Amsterdam and on her way back to college she came to see me.  I had started treatment and was in pretty bad shape but it was good for both of us.  She came to see me on a few weekends and during my one really bad week (the one after my final radiation treatment) when I needed a transfusion, neupogen shots and daily hydration appts. she came and took care of me.  The person I worried most about telling was my 86 year old mother, herself a melanoma survivor.  I just didn't want her to think about another one of her children being sick but she seemed to take it well and just asked me to keep calling her so she'd know I was okay.  

I told all my siblings in a group email which seemed a little impersonal but I had to think of what was most expedient and least taxing for me.  I told them all to call me after.  Only one of my siblings lives anywhere near me and he really came through for me.  He came over just to hang out and when I had to move in the middle of my treatment he came and packed boxes and then came again when my daughter was here and the two of them put my whole house together for me.  I got lots of support from all of my siblings, phone calls, email, goofy cards, goody boxes in the mail.  Lots of love.

I think even your teenagers can deal with this.  It may distract them some but life can do that to you.  I'm sure they love you and want you to get well and will want to do something to help you.  I have a friend who sent her daughter off to college in another state after she'd had 2 surgeries and just before she began a yearlong combination of radiation and chemo for a different cancer.  I think of her as my cancer mentor.  For them the cancer is just a part of what is normal life for them.  And that normal life included her daughter graduating from high school and flying out on her own to start college.

Tell people at your own pace.  Give them as few or as many details as you feel comfortable doing.  At first I told few friends and colleagues but over time I told more people and became more comfortable with talking about anal cancer.  If they asked, I told and I got bossy about HPV vaccines and anal cancer screening.  I surprised myself.

shirlann54
Posts: 161
Joined: Aug 2011

This site Really helped me I didn't know any one who ever had anal cancer.I'am 59 and 2 years out of treatments. I didn't work and i don't think i could have .It takes a lot out of you.My Dr said i had Hemorrhoid's too . I have 2 Kids 38 and 41 years old. They were such a big help to my husband and i .Were here for you ....Shirley

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

check this out Bill ----

 

http://clinicaltrials.gov/ct2/results?term=anal+cancer&Search=Search

 

189 studies found for: anal cancer

Rank Status Study
1 Not yet recruiting A Phase I/II Evaluation of ADXS11-001, Mitomycin, 5-fluorouracil (5-FU) and IMRT for Anal Cancer
Condition: Anal Cancer
Intervention: Biological: Advaxis
2 Unknown Radiation Therapy Plus Fluorouracil With or Without Additional Chemotherapy in Treating Patients With Primary Anal Cancer
Condition: Anal Cancer
Interventions: Drug: cisplatin; Drug: fluorouracil; Drug: mitomycin C; Radiation: radiation therapy
3 Terminated Radiation Therapy, Mitomycin, and Either Fluorouracil or Cisplatin in Treating Patients With Locally Advanced Anal Cancer
Condition: Anal Cancer
Interventions: Drug: cisplatin; Drug: fluorouracil; Drug: mitomycin C; Radiation: radiation therapy
4 Completed Assessing Drivers and Barriers to Follow-Up Screening for Anal Cancer in Men Who Have Sex With Men
Condition: Anal Cancer
Intervention:  
5 Active, not recruiting Radiation Therapy, Cisplatin, Fluorouracil, and Cetuximab in Treating Patients With Locally Advanced Anal Cancer
Condition: Anal Cancer
Interventions: Biological: cetuximab; Drug: cisplatin; Drug: fluorouracil; Other: laboratory biomarker analysis; Radiation: radiation therapy
6 Completed Anal Cancer Screening Study
Conditions: HIV Infections; Papillomavirus Infections; Anus Neoplasms
Intervention:  
7 Active, not recruiting Cisplatin, Fluorouracil, Cetuximab, and Radiation Therapy in Treating Patients With HIV and Stage I, Stage II, or Stage III Anal Cancer
Condition: Anal Cancer
Interventions: Biological: cetuximab; Drug: cisplatin; Drug: fluorouracil; Radiation: radiation therapy
8 Recruiting Cetuximab, Cisplatin, Fluorouracil, and Radiation Therapy in Treating Patients With Stage I, Stage II, or Stage III Anal Cancer
Condition: Anal Cancer
Interventions: Biological: cetuximab; Drug: cisplatin; Drug: fluorouracil; Radiation: radiation therapy
9 Completed Screening for HIV-Associated Anal Cancer
Conditions: HIV Infections; Anal Cancer; Anal Dysplasia; Papillomavirus Infections
Intervention:  
10 Unknown Predictive Value of FMISO-PET, FDG-PET-CT, DWI-MRI and DCE-MRI Scans for Patients With Anal Cancer Receiving Radiotherapy +/- Chemotherapy
Condition: Anal Cancer
Intervention: Other: FMISO-PET, FDG-PET-CT and Magnetic Resonance Imaging (MRI)
11 Completed Chemotherapy Plus Radiation Therapy in Treating Patients With Stage II or Stage III Anal Cancer
Condition: Anal Cancer
Interventions: Drug: cisplatin; Drug: fluorouracil; Drug: mitomycin C; Radiation: radiation therapy
12 Recruiting Topical MTS-01 for Dermatitis During Radiation and Chemotherapy for Anal Cancer
Condition: Anal Cancer
Interventions: Drug: Tempol; Drug: 5-Fluorouracil; Drug: Mitomycin-C; Procedure: Radiation Therapy
13 Unknown Combination Chemotherapy Plus Radiation Therapy in Treating Patients With Stage II or Stage III Anal Cancer
Condition: Anal Cancer
Interventions: Drug: cisplatin; Drug: fluorouracil; Procedure: neoadjuvant therapy; Radiation: radiation therapy
14 Unknown Intensity-Modulated Radiation Therapy, Fluorouracil, and Mitomycin C in Treating Patients With Invasive Anal Cancer
Condition: Anal Cancer
Interventions: Drug: fluorouracil; Drug: mitomycin C; Radiation: intensity-modulated radiation therapy
15 Completed Capecitabine, Oxaliplatin, and Radiation Therapy in Treating Patients With Stage II or Stage III Anal Cancer
Condition: Anal Cancer
Interventions: Drug: Capecitabine; Drug: Oxaliplatin; Radiation: Radiation Therapy (XRT)
16 Completed Infrared Coagulation in Preventing Anal Cancer in Patients With HIV Who Have Anal Neoplasia
Conditions: Anal Cancer; Precancerous Condition
Interventions: Procedure: infrared photocoagulation therapy; Device: Infrared Coagulator
17 Completed SGN-00101 in Preventing Anal Cancer in Patients With HIV Who Have Anal Neoplasia
Condition: Anal Cancer
Intervention: Biological: HspE7
18 Recruiting Infrared Coagulator Ablation or Observation in Preventing Anal Cancer in HIV-Positive Patients With Anal Neoplasia
Conditions: Anal Cancer; Neoplasm of Uncertain Malignant Potential; Nonneoplastic Condition; Precancerous Condition
Interventions: Other: clinical observation; Procedure: infrared photocoagulation therapy
19 Unknown Low-Fiber Diet or High-Fiber Diet in Preventing Bowel Side Effects in Patients Undergoing Radiation Therapy for Gynecological Cancer, Bladder Cancer, Colorectal Cancer, or Anal Cancer
Conditions: Anal Cancer; Bladder Cancer; Cervical Cancer; Colorectal Cancer; Fallopian Tube Cancer; Gastrointestinal Complications; Ovarian Cancer; Radiation Toxicity; Sarcoma
Interventions: Dietary Supplement: dietary intervention; Other: laboratory biomarker analysis; Procedure: gastrointestinal complications management/prevention; Procedure: management of therapy complications; Radiation: selective external radiation therapy
20 Recruiting Tissue Procurement for Gastric Cancer, Gastrointestinal Stromal Tumors (GIST), Esophageal Cancer, Pancreas Cancer, Hepatocellular Cancer, Biliary Cancer, Neuroendocrine, Peritoneal Mesothelioma, Anal Cancer and Colorectal Cancer in Patients Undergoing Surgery or Biopsy
Condition: Gastric Cancers
Intervention:  

 

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torrance
Posts: 118
Joined: Jan 2012

Bill,

By now I am sure you have found that your story is all to familiar to us!  What I hope you can keep in mind on journey is that, there will be no dumb questions, and no question you can't ask.  NO secrets here.

About working, my biggest concern for you would be your exposure.  Once you start chemotherapy you will be VERY vulnerable to any infection/virus/cootie you come in contact with.  Your PICC line will also be vulnerable for the duration of your treatment.  Don't unnecessarily put yourself at risk as you will NEED all your strength for this battle.

All kids are different in how they would respond.  You know your kids well and I say give them the information they may need to understand the situation.  You could invite the older ones to join a support site, they may need to reach out on your behalf as well.  A STRONG supportive group is essential and they truly can help you with this battle.

Please know you are in all our prayers as well as your girlfriend and kids.

 

Joanne

Stage 2, two years from end of treatment.

Bill158
Posts: 19
Joined: Apr 2013

Thanks again to everyone above--I am overwhelmed at the caring responses you all have given me.  I have been busy driving home, getting hosed by the butt docs, and driving back to work again during a blizzard here.  Finally slowed down enough that I could read everyone's notes.  My colonoscopy showed about a 1.5cm nodule at my anus that they though was neoplasm, but they didn't biopsy it--rest of scope was ok.  I checked with my rad/onc today, and I am going to get IMRT, and I am stage 3b.  My girlfriend and I sat down after having sushi last night (I was starving), and we had a talk---I told her that I knew she didn't bargain for this, and I would understand if she didn't think she could hang--she said she wasn't going anywhere, and then when I started to tell her if she changed her mind, she said she would beat me if I asked her again, and that she WASN'T GOING ANYWHERE,  so i shut up at that point.  She's awesome.  She has had two sibs that died of cancer, so she said she can handle it. 

I haven't told my family, and kids yet.  I can see where it would strengthen the family, but my 16 year old son is very sensitive, even though he acts tough, so that has got me wondering how and when to tell them--I will probably have to soon since I will have a PIC line hanging off of me next week.

Work... sounds like I may be underestimating what this is going to do to me. 

seems like time is going slow until treatment begins,...I appreciate everyone here.

bill

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I'm glad your scope was negative for any findings except for the anal nodule.  Now you and your doctors know exactly what is to be dealt with.  As has been stated by many above, the treatment can be brutal for some (but not all), so you really aren't going to know how your experience will be until you're in the thick of it.  I agree with Torrence that you may want to rethink working during treatment.  As you already know, chemo will attack your immune system and make you vulnerable to bugs/infections.  As we all know, hospitals are full of such things.  I was hospitalized in January for a bowel obstruction and my biggest concern was not getting "sick" while I was an inpatient.  I hope you're in a position to take a leave if you need to.

As for girlfriends, spouses, and significant others, my husband was a rock during my treatment.  Your girlfriend sounds pretty tough too and able to handle whatever lies ahead in your journey.  You will need her support, so I'm very glad she is going to be by your side for the duration.  As for your kids, specifically your son, since you will most likely be unable to hide this from them, probably being upfront, while being as positive as possible, would be a good approach.  Again, I don't have kids, so maybe I shouldn't even comment on that. 

The bottom line is you all will get through this.  I think your knowledge as a physician will be of huge benefit to you.  I had worked in various jobs in healthcare admin over the years prior to my diagnosis, but when I heard those words "You have cancer," suddenly I felt as though I knew nothing.  I learned quickly that I had to educate myself.  However, the big thing lacking for me was a support group, such as the people on this site.  I think my journey would have been much easier had I had all of these wonderful people to communicate with and I hope you will come here as often as needed to get support--we will be here for you.  I wish you all the best as you near the beginning of treatment!   

torrance
Posts: 118
Joined: Jan 2012

Bill,

Please keep in mind on your journey and as you tell your son and others, they will all feel like they have cancer too!  They will feel helpless when it comes to be able to help you at times, try to make it a point, even at your lowest, to ask for their help, even with the smallest of thing.  Like, hand me the remote, can you get my spray bottle out of the fridge, etc.  It will be those small requests to you, but will help them feel like they are making a difference to you! Again, one day, one test, one treatment at a time.

 

Joanne

Marynb
Posts: 1134
Joined: Aug 2012

Oh, how I wish I had gotten your advice when I was going through treatment, Joanne. After it was all over, my daughter expresssed deep anger and hurt that she wasn't allowed to help me. I thought I was doing the right thing by protecting her. I never, ever wanted to hurt her feelings.

Missgrace's picture
Missgrace
Posts: 37
Joined: Apr 2012

I felt fine all the way through treatment and didn't start feeling bad 'till treatment was finished. Of course, I had some painful skin burns but could still function. My oncologist said I was the "model patient" and handled therapy better than anyone he had ever seen. A few days later,I started experiencing tachycardias (200-300 beats per minute--too fast to count) and a fever of 104+. After a week in the hospital, blood transfusions, and LOTS of drugs, I stsrted feeling better. I remember thinking that I would rather die than relive that week, but I'm fine now. Don't despair: Life may be a little different but it's still good. You will still be able to do the things you used to do, but be prepared for a bit of a rough patch .I'm less than a year post treatment and I can once again out-drink, out-dance and out-party my friends. You may have loftier goasls, but you'll get there Hang in there!

shirlann54
Posts: 161
Joined: Aug 2011

I had a pic line too .One good thing about a pic line is they take it out the day your done with your last chemo...Shirley

Bill158
Posts: 19
Joined: Apr 2013

I can't wait to get this PIC line out.  It wasn't aspirating 2 days ago, so the home health nurse had to infuse Alteplase to get it going again.  It would flush fine but you couldn't draw blood back.  I have been flushing it twice daily. 

So I finished my chemo in the first week, which wasn't too bad--had nausea for 1 day relieved with Zofran, and my mouth and tongue hurt for the next week.  I've had 10 rad treatments so far, and starting to get some signs of burns in the crack area.  Not having diarrhea yet, but BM's are painful, and there is an aching inside afterwards.  Using Calmoseptine on the skin.  So far I'm eating pretty much anything that I usualy would, except when my mouth was hurting, i stayed away from spicy, acidic, crunchy foods.  I've been working weekends and that's going fine so far.  I've noticed there isn't blood with my BM's or when i wipe now, and I used to always have some bleeding, so I'm hoping that's because whatever was bleeding is getting poisoned, or cooked!  21 more rad treatments to go, and one more round of poison.

bill

jcruz
Posts: 257
Joined: Jan 2013

I'm glad you posted an update.  I'm impressed that you've been able to work weekends.  That's fantastic.

Sounds pretty similar to my first 2 weeks.  A little nausea and extreme fatigue from the chemo and a nasty case of thrush the following week.  Also did notice the bleeding diminish.  One of my doctors had said I would notice that and it was the radiation doing its work.  It was a little relief from the pre-treatment pain and bleeding but it was followed further through the treatment with more pain, burns, etc.  Oh, I remember that aching inside after a BM.  I think I was taking 5mg oxy as needed at that point.  After another few weeks I was on the CR 10mg oxy all the time.   

I'm now 7 months post-treatment.  Occasionally I am overcome with fatigue but it's definitely improving.  I'm also being a little more adventurous in my food choices and don't seem to be the worse for wear.  I've realized in the last month that I could use some counseling - I don't know why it took me so long to clue in to that.  

Good luck to you as treatment progresses.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. It sounds like your body is responding well to the treatments! That is great news. So far, so good. To prevent mouth sores, I was told to rinse with a warm salt water solution several times a day. It helped and I did not get mouth sores. You might want to try it. As a doctor, I am sure that you know enough to keep an eye on your white blood counts and avoid contact with germs if it gets too low. At a couple of points, my counts got very low and I needed the shots and was told to stay away from people, wear mask, etc.

I hope your son is doing ok with your diagnosis. I wish that I had talked more with my college aged daughter about it.

Hang in there! You are in my thoughts and prayers as you go through this.

LaCh
Posts: 520
Joined: Dec 2012

My advice is to have no expectations one way or the other regarding how you're going to feel since the experiences run the gamut.  I was ok until week 4 but some people are ok throughout.  Your girlfriend has no reason to ditch you (although of course, that's not any of my business) but insofar as the treatments go, they can be difficult, challenging and painful and then they're over. Having lymph node mets is certainly not what you want, but if given the same set of circumstances, if you wouldn't leave her, why would she leave you?  Anyway, after treatment it seems pretty common that the external burns (that most but not everyone gets) heal pretty quickly after the radiation ends and then you deal mostly with the aftereffects of the radiation (faitgue etc) but the important thing to keep in mind is that everyone responds differently. I didn't have a PICC, I had a chest port and it was a nightmare--yet for some it's not a problem at all. Everyone is different, some people have support, some people don't, some people have awful side effects, some people don't.  My advice is to address problems when you have them, not before. Cross bridges when they're before you and don't worry about how to cross them if they're not. Above all question EVERYTHING. YOU are your own advocate. No one is going to care about the outcome as much as you will. (I'm not saying that you're not loved; I'm talking about your medical team). This is a peculiar cancer in that you don't have month after month of chemo or radiation ahead of you; it's short and then it's over. I'm not saying it's a walk in the park, but it's something you can deal with.  People do.  You can too, by putting one foot in front of the other and not worrying about tomorrow until tomorrow comes.  

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I was glad to see your update, as I've been wondering how you were doing.  Your first week of chemo sounds a lot like mine--tired with a little nausea, controlled effectively with meds.  I had thrush for which I was prescribed Magic Mouthwash.  I'm really impressed that you are able to work weekends and I hope you can keep that up.  I'm sure your blood counts will dictate as to whether that remains a good idea or not, along with some other possible side effects.  My hope is that you will have minimal issues.  Please keep us posted.

pializ
Posts: 284
Joined: Nov 2012

Just wondering how you are doing

Liz

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I have been thinking about you too and hoping that all is going well.  Update us when you can.

Bill158
Posts: 19
Joined: Apr 2013

mp and liz, thanks for asking--I'm doing ok, and at work tonight, working tonight and the next two nights.   I have my chemo pump in a fanny pack tonight, since it won't run out until tomorrow sometime--it was started on Tuesday because of the holiday.  My white blood cell counts have all been good so far, and the only side effects from the chemo is the metallic taste in my mouth, a little nausea, and my mouth is starting to feel sensitive again, but I have magic mouthwash if it gets real sore again.  I've had 24 radiation treatments so far and I think I have just 6 more to go, but maybe 7 due the holiday.  They started the "coned down" rad treatments last week, but I am more burned and peeling more than ever--the crease where my thigh meets the pelvis has big pieces of skin peeling off, and its pretty sore and red.  Ibuprofen does ok for that pain while I am at work, but I have used about 8 Percocet in the last 10 days for bad days usually in the morning. 

Bowel movements are so painful--never have had pain like that before.  I have just started to have diarrhea intermittently and can't tell if its related to anything I am eating, but I did find out that beans cause almost immediate cramping, massive amounts of gas, so I have avoided them--I like having beans and rice so I miss that. 

I can't wait to get rid of this PICC line, and my onc said I can take it out this weekend after my chemo pump is done. 

My energy levels have been good.  I have an occasional lazy day and the couch calls me to lay down and take naps, so I have been listening to my body and resting when I need to.  I planted my patio garden and my tomatoes, kale, peppers, peas are all doing good--have them on a drip system so they get watered when I'm out of town. 

I am very much looking forward to finishing up my treatments--my girlfriend and I are going to Puerto Rico that we have had planned since January (have a medical convention/education conference there), so I am hoping I will be all healed up by then. 

pializ
Posts: 284
Joined: Nov 2012

Thanks for updating us! Pardon the pun, but the end is in sight! You are doing really well & although I felt I did well during treatment,  there is no way I could have worked at that time (or now even & I am 4 months past treatment now). Puerto Rico has a good sound to it. Although the picc didn't cause me any problems at the time, it was a relief to have it taken out. Not much more now, then it will be over! Take care, & keep us updated if you have time. Liz

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

It's really good to hear from you--I'm amazed at how well you are doing this far into treatment.  Being able to work is something I could not have done.  Painful BM's--that is putting it mildly.  I'm so sorry you are having to deal with that, but I think most of us did.  Beans and any high-fiber foods are probably not your friend right now, but once you recover, hopefully, you'll be able to enjoy them again, especially since you are a gardener.  Perhaps by the time you read this you'll be rid of the pump and picc line.  With only 6 more treatments to you go, you're almost there!  The last few can be rough, but you can do this!  I'm glad you have your girlfriend to support you through this and when it's over, you both certainly deserve that trip to Puerto Rico--it's beautiful there!  Please let us know when you can how things continue to go for you after treatment is over.  As always, I wish you all the best! 

sephie's picture
sephie
Posts: 541
Joined: Apr 2009

wow,   you are doing sooooo great!!!!!  being a physician you will not make the mistake i did and remove Picc line too soon...  at end of my tx, i knew that i was pretty sick and had loads of diarrhea but thought that was the way it was.... last day of chemo , i hated my picc line and had it removed immmediately.... 2 days later i was put in er and hospital at MDA.... needed picc line to keep from having sooooo many iv's and etc.... blew all my veins.... so  make sure you are not needing it for fluids and etc..... i also had a trip planned for 2 weeks after end of tx.... before tx started my team told me i would not be able to make the trip,... i thought they were wrong because i was strong , healthy, etc... but they were correct.... could not make the trip.....   take care.....sephie

Marynb
Posts: 1134
Joined: Aug 2012

I am so glad to hear that you are doing well! You are almost at the end, and soon cancer in your body will be history! Congratulations! It sure will be a happy day when that darned picc line comes out! Hang in there and I am hoping you heal quickly.

jcruz
Posts: 257
Joined: Jan 2013

I just want to echo sephie's caution about removing the picc line as soon as the last chemo drips in.  I needed 3x a week hydration during most of my treatment and continued to need it for weeks after the last chemo.  I remember both of my oncologists saying the first 2 weeks after the end of treatment would be the hardest and they were so right.  I had one week of radiation left after the 2nd round of chemo and the week following that last radiation I had an infection, a fever, disastrously low blood counts and needed a transfusion, 3 neupogen shots and 4 hydration sessions in the infusion center.  I was near needing to be hospitalized but fortunately the care I received in the infusion center kept me from being admitted.  I continued with hydration for another 2 weeks and finally on my birthday almost a month after that last chemo I felt like I didn't need anymore.  I had a port rather than a picc line which definitely made the whole thing easier for me.  

I am in awe that you have been able to continue working.  I wish you well as you approach the end and begin the recovery phase of this arduous journey.  

Bill158
Posts: 19
Joined: Apr 2013

I appreciate everyone's words of encouragement, and also caution about the PIC line.  I still have it in since I felt kinda rough last night--was nauseated, and i think I let myself get a little dry.  Feeling better tonight except for feeling like I am sitting on a BBQ grill.  Might just leave it in for another day or two to see how things go.  I do have another question though--they told me coning down the treatments would lessen the symptoms, and side effects, and I assumed the burns, but this weekend my crotch area, and man parts were red and burning, and a little swolen--normally the genitals have been getting burns on the back part, but this was all over this weekend.  It didn't look like an infection, and the genitals aren't so sensitive, and red now, but still have a lot of peeling skin between my legs---is this normal or could the treatment fields have been off, or do they just open it up at the end to make sure they get everything? 

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

Based on my own experience, I seriously doubt that coning down will lessen symptoms/side effects.  I was the most miserable during the last week of treatment, my coning down week, and for the week after treatment ended.  I believe this is because the effects of the radiation are cumulative and the radiation continues to work for some time after that last zap.  My skin peeled quite badly between my legs too.  I am sure your treatment fields were set correctly, as your issues sound typical for this treatment.  The usual protocol is not to open it up at the end, rather it's to cone down and target the tumor area only.

This is a rough time in the treatment, but hang in there.  I felt markedly better 10 days after my treatment ended.  I hope that will be the case for you.

Lorikat's picture
Lorikat
Posts: 562
Joined: Jul 2011

Ditto what Martha said....  The THREE weeks after treatment were the very worst for me.  I wore nothing but dresses and kept a fan on my nether parts when ever able to!  

 

Bill158
Posts: 19
Joined: Apr 2013

Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry to hear of your complications and I hope and pray you feel better very soon. I am glad you have been admitted so you can get the care that you need. My WBC's got very low twice and I was given neupogen shots. Those shots made me feel pretty lousey, but the counts came back up in a few days. From reading posts here, it appears that men may have a greater chance for severe burns. It must be very painful. I am sorry. The last two weeks are no day at the beach, to say the least! I am praying that you heal very quickly! Hang in there! Sending you hugs and prayers!

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

I'm sorry you are going through all this as you approach the home stretch.  I did have burnt skin with 2nd and some 3rd degree burns.  It started to heal about 3 weeks post treatment. I'm glad you are being cared for and I pray that they will get it all under control so that you can begin the healing process. 

You are in my thoughts.

Liz

pializ
Posts: 284
Joined: Nov 2012

Sorry you are in so much pain. You have done amazingly well so with the care you are noe receiving, your healing process will soon be underway. Ride it out and take any pain relief offered, & if it's not, ask for it. Keep us informed of your progress. Liz

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I am so sorry to hear this, however, I'm not really surprised.  The last week is hell, at least it was for me, and I think for many others.  I had severe burns too, accompanied by a low WBC, which required Neupogen injections that made me feel like crap for a couple of days afterwards.  They did, however, boost my count enough to continue with radiation.  It sounds like you are very miserable and it does indeed suck.  The painful BM's--I remember well how I would begin to cry as I ran to the bathroom to have one.  I didn't want to eat because I knew that what went in would eventually have to come out.  Many of us know what you are going through right now, but the good news is we are all still here, recovered from the acute stage of side effects.  You will recover too once you get past this.  Hang in there and update us when you can.  You will certainly be in my thoughts. 

Barb5454's picture
Barb5454
Posts: 78
Joined: Feb 2013

Hi Bill...I'm so sorry you have to endure this.  Im 5 months post treatment and I remember they had to stop my treatments because I had 3rd degree burns and horrible vaginitis!! My wbc was the same as yours. I had 10 treatments left and I finished them but I had to wait 2 weeks. My WBC came back up after about a week. Hang in there!

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