Need help translating into lay terms

Wisteria83

Hi folks.  I completed all the testing last week.  PET scan, CT scan, Pelvic MRI and another blood test.  I saw the medical oncologist for the first time and the radiologist for the second time for planning.  I'm tentatively expecting to begin treatment on Monday, March 13th.

First the good news.  No nodes involved and it's nowhere else in my body.  The bad news is that the tumor was upgraded to a "3."  On the MRI report it's called T3b.  I can't figure out what exactly the "b" means, so if anyone can tell me, I'd appreciate it.

I've been reading everything I can find about anatomy so I can understand the report, but I'm still confused.  The tumor is 5x3.5cm, right lateral anal and rectal wall, nearly circumferential along it's inferior aspect.  The anorectal junction is involved.  Near completely circumferential in the anal portion, involves the rightward lateral rectal wall.  Involvement of Muscularis Propia and invasion of the right external sphincter levator ani muscle.  There is displacement of the rightward vaginal wall anteriorly, tumor invasion of the posterior wall of the vagina may be present on axial series 601, image 14.  Mesorectal Fascia appears to be involved on the right side.  If anyone can explain this to me in plain English, or direct me somewhere where I can read about this so I can understand it, I'd appreciate that too!

I'm expecting 6 weeks of radiation, M-F, weekends off.  I'll be having two rounds of Mitomycin, weeks one and four.  I'm waiting to hear from a mail order pharmacy about the Xeloda (Capecitabine) pills which I'll be having instead of 5-FU on my radiation treatment days.  Since I won't be taking the 5-FU, I won't need a port.  IF the Xeloda is out of reach financially, all bets are off, I guess, and I'll be getting the port and 5-FU.  I sincerely hope that I'll be able to afford the pills.  Although we are on a fixed income, and aren't rolling in dough, we still make too much money to qualify for extra help paying for treatment.  Not much more, sadly, so this is going to create a genuine hardship for us since we just manage to live within our means with no extras. We each drive cars that are 10 and 12 years old, and we have a mortgage that is managable.  This is going to be very costly, and I've only half joked with my husband about getting divorced so that I would qualify for the extra help in paying for my treatment, but at this stage it's probably best to just get on with the treatments rather than postpone them in order to obtain a divorce.  I think there's a 6 month waiting period from the time filing is made.  I really am only half joking about this.  I feel tremendous guilt for causing us financial hardship.  

My job this week is to rest, and eat as much as I can to gain weight before treatment starts.  I mentioned in my first post that I'm 85 lbs.  The doctors want me to try for 5-10 lbs.  I saw the nutritionist and got a lot of information from her and some samples of supplements like Boost and Ensure that have high calories and protein.  I'm forcing myself to eat, but I have no appetite, and so far I haven't gained. 

I'm also experiencing pain up inside my rectum.  It's been for the last couple of weeks only, but it has been getting worse, and I told my doctors.  My radiologist is going to be taking over my pain management for the duration of my treatment, because he has a lot more leeway with regards to prescribing than my actual pain management doctors do.  He's already written me a prescription for Oxycodone and has told me that he'll be increasing the dose of my Fentanly patch next time I need a refill, which will be next week.  That is such a relief to me since I know that he will stay on top of this.  Being a chronic pain patient, I have a contract with Pain Management, so my radiology oncologist wrote them a letter to let them know that he'll be taking over temporarily, so I won't be red-flagged.  He took this step because he tried to contact their office for over a week and got no response from them, and I called too and finally got a response after a week and was told to just keep the appointment that I have with them today and discuss it then.  So I'll be seeing pain management this afternoon, armed with a copy of the letter my oncologist sent, so there won't be any real discussion, except for me telling them the way it's going to be.  I've had so many issues with their office...not returning phone calls and not refilling prescriptions in a timely manner.  It's very frustrating, but I haven't dared say anything because I've learned not to piss people off if you need something from them. 

I'm so grateful to those of you who are here on this board.  I can't imagine going through this without having you to explain things and offer advice and support.  I've learned so much already just from reading others' posts.  The biggest thing is knowing that I'm not alone, and that nothing is taboo to discuss and no problem or question is "silly."  That means so much, so thank you all.

Fondly,

Wis

 

 

mxperry220

Anal Cancer Staging

Below is a link that may help you better understand anal cancer staging 3b.

http://www.cancer.net/cancer-types/anal-cancer/stages-and-grades

mp327

Wis

I see that Mike has already posted a link for you that explains staging for anal cancer.  I am a little confused, however, since IIIB would mean not only is your tumor more than 5 cm at its greatest dimension, but that there is lymph node involvement.  As per your post, you state that there was no involvement in the lymph nodes.  I would ask your doctor to clarify that. 

Since I'm not a radiologist, I am not even going to attempt to tell you what all of those terms in the narrative report mean.  Again, your doctor is the best person to ask for an explanation.  I would also ask about the schedule for your chemo.  I received Mitomycin at the beginning of week 1 and week 5, which differs from what you posted, saying you would get it at week 4.  If you register on the site for the National Comprehensive Cancer Network and view the protocol for the treatment of anal cancer, you'll see what I'm referring to.  I'm not saying your doctors are wrong, but the schedule they gave you would differ from the NCCN guidelines as I've stated above. 

I'm glad you have pain management in place.  Now if you can gain some weight before treatment, that would be good.  I weighed about 95 pounds at that time and it was rough trying to eat enough to keep going.  I tried Boost, but did not like the taste of it.  I had better luck with Carnation Instant Breakfast mixed with whole milk with some powdered milk added.

As for the finances involved, it's difficult not to worry about that, I know.  But try to focus on the treatment and getting rid of the disease first.  That has to be your top priority right now.  You will get through this, you will.  Please keep us posted as your treatment date nears.

Martha

Pat42

xeloda
Wis,
My wife will complete the same treatment on the very day you are starting! I know its overwhelming and scary, but it will surprise you how fast you will start to consider your treatments routine. It doesn't hurt as you are getting the actual radiation treatment, and neither did the Mitomycin in my wife's case. Reading a lot on this forum will help you prepare for what's coming up in each succeeding day or week of your treatment (my wife doesn't like reading about it, she wanted me to read it and relay it to her). This treatment is not easy, but so many here have done it.
I'm not very knowledgeable about the biology aspect of all this, but the treatment seems to be very effective, even with tumors larger than the one that's bothering you. My wife's was only slightly smaller, and the doctor could barely detect it last week with two weeks to go. The radiation effects keep working if needed for several months to get rid of the cancer.
My wife didn't want to do the 5FU because of the port, she didn't like the idea of being "plugged in". The cancer nurses/doctors actually helped us get approval from the insurance company for the Xeloda. They mentioned at first that they might not go for it, but it turned out to be a non-issue, it was approved before our next appt. It went through "Accredo Health Group". The chemo doc didn't know exactly how much it would have cost us to buy the Xeloda ourselves, but told us "between $5000 and $8000". Not sure how they did it, but hopefully your experience will be the same and it will all be covered. Having read that most of the people on this forum seem to have had the port with 5FU instead of Xeloda, and looking back, we probably would have done the port instead of paying the extra money if it had come to that. The port sounded scary at first, but almost everyone here handled it fine. The good thing about the 5FU was that it was just two weeks. The bad thing about the Xeloda is that she got REALLY tired of taking those six pills every weekday for the whole treatment time.
One other thing about coverage. Most of the prescriptions they wrote were covered no problem with our insurance. Two surprising exceptions were something called "Magic Mouthwash" and "Neupogen". Our local food store pharmacy called the insurance company and they refused the magic mouthwash (this is used for mouth sores, which she didn't end up having, fortunately). Since they wanted $60 and my wife didn't yet need it, I stopped in at the hospital pharmacy the next day to check their price. They called the insurance company, and got it covered! I'm guessing they know how to word things to get the coverage better than the general pharmacy does (the doctor had told me this at the first appt, and I had assumed it was just a shameless plug to use their pharmacy). Neupogen is used to boost a certain kind of blood cells called neutrophils if the counts get too low. I think most people don't end up getting their counts low enough to need this with the anal cancer treatment, fortunately my wife didn't. But they called it in "just in case" to get pre-approval and it was denied. Twice. The denial letter was really weird, didn't make any sense (something like, "neupogen is used to increase white blood cell counts. Your doctor says you have low white blood cell counts. Therefore, we have decided you don't need this."??? I called to talk to them, and the person I talked to even admitted their reason for denial didn't make sense. From a little research I also found that quite a few insurance companies are not covering this any longer, not sure why. I never got a firm cost directly to the patient on this either, but read things that suggested it could be as much as $3000 for a shot. Hopefully you won't need this either.
So things turned out ok for us with the insurance coverage, given that the neupogen wasn't needed. If it had been needed, or if the Xeloda hadn't been covered, that could have been a lot of money out of pocket, like you're talking about.
If they had not covered the Xeloda for us, and knowing how routine the port route actually is from reading others' stories, I think my wife would have rather gone on a post-recovery cruise than spend the $5K on the Xeloda!
Also, on the subject of weight loss during treatment. My wife managed to lose only a pound during the course of treatment (still have a week to go, but hopefully won't lose any more). Her appetite has been horrible for weeks, she says the Xeloda pills make everything taste bad (another reason 5FU by port might be better, don't know if it has the same effect or not). We had never used Ensure before this treatment, but for the last six weeks it has become a daily thing. There are three or four different versions. The one we use is called Ensure Enlive, which has 350 cals and 20g of protein in 8 oz. Other versions of ensure either have significantly less protein or calories. Two and a half Enlive bottles give you all the protein a normal woman needs in a whole day.
The best of luck to you, I hope you find this forum as helpful as we have!

Pat

Mollymaude

Wisteria

the other people replying to your post were very complete in their replies. I agree you should ask for clarification on the radiology report but on the other hand don't get too caught up in it if you know what I mean. I guess the important question is: "does this radiology report change my prognosis?" My tumor was about the size of a chicken egg and was very painful, after my oncologist said I couldn't take Tylenol and ibuprofen I ended up on oxycodone pretty quickly. I honestly can't remember what number came after the T For the staging But it was a largish tumor. I took the 5FU and did fine with it. I didn't like the port or the I fusion week of 5FU but it was doable and if you need to do it because of finances you can get thru it fine. 

Wisteria83

mp327 said:

Wis

I see that Mike has already posted a link for you that explains staging for anal cancer.  I am a little confused, however, since IIIB would mean not only is your tumor more than 5 cm at its greatest dimension, but that there is lymph node involvement.  As per your post, you state that there was no involvement in the lymph nodes.  I would ask your doctor to clarify that. 

Since I'm not a radiologist, I am not even going to attempt to tell you what all of those terms in the narrative report mean.  Again, your doctor is the best person to ask for an explanation.  I would also ask about the schedule for your chemo.  I received Mitomycin at the beginning of week 1 and week 5, which differs from what you posted, saying you would get it at week 4.  If you register on the site for the National Comprehensive Cancer Network and view the protocol for the treatment of anal cancer, you'll see what I'm referring to.  I'm not saying your doctors are wrong, but the schedule they gave you would differ from the NCCN guidelines as I've stated above. 

I'm glad you have pain management in place.  Now if you can gain some weight before treatment, that would be good.  I weighed about 95 pounds at that time and it was rough trying to eat enough to keep going.  I tried Boost, but did not like the taste of it.  I had better luck with Carnation Instant Breakfast mixed with whole milk with some powdered milk added.

As for the finances involved, it's difficult not to worry about that, I know.  But try to focus on the treatment and getting rid of the disease first.  That has to be your top priority right now.  You will get through this, you will.  Please keep us posted as your treatment date nears.

Martha

Schedule

Hi Martha, thanks for responding.  I'm definitely going to ask them about the chemo schedule on Wednesday when I go back.  The medical oncologist gave me copies printed from the NCCN guidelines with the plan she will follow circled.  I also have read through the guidelines on the site a couple of times as you had previously suggested.  It seems like the more I read and learn, the more questions I have.  Perhaps they meant at the end of week 4.

In regards to the staging, I'm wondering if they put that "b" in there because there was a question of it invading the vaginal wall, and it wasn't super clear on the MRI.  Again...more questions.  I don't think it matters since it's all going to be radiated there anyway.

I will try your suggestion of Carnation Instant Breakfast.  I'm not a milk drinker, but I'll do it to gain weight.  Maybe if I add ice cream?

 

Wisteria83

mxperry220 said:

Anal Cancer Staging

Below is a link that may help you better understand anal cancer staging 3b.

http://www.cancer.net/cancer-types/anal-cancer/stages-and-grades

Staging

Thank you.

 

mp327

Wisteria83 said:

Schedule

Hi Martha, thanks for responding.  I'm definitely going to ask them about the chemo schedule on Wednesday when I go back.  The medical oncologist gave me copies printed from the NCCN guidelines with the plan she will follow circled.  I also have read through the guidelines on the site a couple of times as you had previously suggested.  It seems like the more I read and learn, the more questions I have.  Perhaps they meant at the end of week 4.

In regards to the staging, I'm wondering if they put that "b" in there because there was a question of it invading the vaginal wall, and it wasn't super clear on the MRI.  Again...more questions.  I don't think it matters since it's all going to be radiated there anyway.

I will try your suggestion of Carnation Instant Breakfast.  I'm not a milk drinker, but I'll do it to gain weight.  Maybe if I add ice cream?

 

Wisteria83

I know what you mean about having more questions as you read up on this.  I'm sure your oncologist can clarify your chemo schedule for you and that it will be along the guidelines set in the NCCN protocol information.  As for the "b" in your staging, I just don't know.  But you are right--the entire area is going to get zapped.

And I say a big YES to adding ice cream to your Instant Breakfast!  Go for the Haagen Daz! 

Wisteria83

Pat42 said:

xeloda
Wis,
My wife will complete the same treatment on the very day you are starting! I know its overwhelming and scary, but it will surprise you how fast you will start to consider your treatments routine. It doesn't hurt as you are getting the actual radiation treatment, and neither did the Mitomycin in my wife's case. Reading a lot on this forum will help you prepare for what's coming up in each succeeding day or week of your treatment (my wife doesn't like reading about it, she wanted me to read it and relay it to her). This treatment is not easy, but so many here have done it.
I'm not very knowledgeable about the biology aspect of all this, but the treatment seems to be very effective, even with tumors larger than the one that's bothering you. My wife's was only slightly smaller, and the doctor could barely detect it last week with two weeks to go. The radiation effects keep working if needed for several months to get rid of the cancer.
My wife didn't want to do the 5FU because of the port, she didn't like the idea of being "plugged in". The cancer nurses/doctors actually helped us get approval from the insurance company for the Xeloda. They mentioned at first that they might not go for it, but it turned out to be a non-issue, it was approved before our next appt. It went through "Accredo Health Group". The chemo doc didn't know exactly how much it would have cost us to buy the Xeloda ourselves, but told us "between $5000 and $8000". Not sure how they did it, but hopefully your experience will be the same and it will all be covered. Having read that most of the people on this forum seem to have had the port with 5FU instead of Xeloda, and looking back, we probably would have done the port instead of paying the extra money if it had come to that. The port sounded scary at first, but almost everyone here handled it fine. The good thing about the 5FU was that it was just two weeks. The bad thing about the Xeloda is that she got REALLY tired of taking those six pills every weekday for the whole treatment time.
One other thing about coverage. Most of the prescriptions they wrote were covered no problem with our insurance. Two surprising exceptions were something called "Magic Mouthwash" and "Neupogen". Our local food store pharmacy called the insurance company and they refused the magic mouthwash (this is used for mouth sores, which she didn't end up having, fortunately). Since they wanted $60 and my wife didn't yet need it, I stopped in at the hospital pharmacy the next day to check their price. They called the insurance company, and got it covered! I'm guessing they know how to word things to get the coverage better than the general pharmacy does (the doctor had told me this at the first appt, and I had assumed it was just a shameless plug to use their pharmacy). Neupogen is used to boost a certain kind of blood cells called neutrophils if the counts get too low. I think most people don't end up getting their counts low enough to need this with the anal cancer treatment, fortunately my wife didn't. But they called it in "just in case" to get pre-approval and it was denied. Twice. The denial letter was really weird, didn't make any sense (something like, "neupogen is used to increase white blood cell counts. Your doctor says you have low white blood cell counts. Therefore, we have decided you don't need this."??? I called to talk to them, and the person I talked to even admitted their reason for denial didn't make sense. From a little research I also found that quite a few insurance companies are not covering this any longer, not sure why. I never got a firm cost directly to the patient on this either, but read things that suggested it could be as much as $3000 for a shot. Hopefully you won't need this either.
So things turned out ok for us with the insurance coverage, given that the neupogen wasn't needed. If it had been needed, or if the Xeloda hadn't been covered, that could have been a lot of money out of pocket, like you're talking about.
If they had not covered the Xeloda for us, and knowing how routine the port route actually is from reading others' stories, I think my wife would have rather gone on a post-recovery cruise than spend the $5K on the Xeloda!
Also, on the subject of weight loss during treatment. My wife managed to lose only a pound during the course of treatment (still have a week to go, but hopefully won't lose any more). Her appetite has been horrible for weeks, she says the Xeloda pills make everything taste bad (another reason 5FU by port might be better, don't know if it has the same effect or not). We had never used Ensure before this treatment, but for the last six weeks it has become a daily thing. There are three or four different versions. The one we use is called Ensure Enlive, which has 350 cals and 20g of protein in 8 oz. Other versions of ensure either have significantly less protein or calories. Two and a half Enlive bottles give you all the protein a normal woman needs in a whole day.
The best of luck to you, I hope you find this forum as helpful as we have!

Pat

Thank you

Hi Pat, thanks for your response.  I'm glad to hear that your wife is getting finished and you've had good results so far.  She sounds like a trooper!  She's lucky to have you do her reading for her too.  My husband is super supportive, but I'm the one that's doing all the reading...that's fine, because he's a great cook!

I've been disabled since 2006 and have only Medicare for insurance and Silverscript for part D.  Silverscript won't cover Xeloda at all, and when I looked at their site to see, they said it would cost over $58,000. out of pocket.  That's ridiculous.  I'm not Trump or Opra.  I'm wondering if Medicare will cover it at all...still checking.  I also would prefer to spend money on a post-recovery cruise...or a trip to Scotland...I've always wanted to go there.

I've been told that I have great veins, and I'd like to keep them that way, so if it comes to needing a port, I'll go that route if I have to.  

I'm using the high calorie ensure and boost.  I may need to drink it more frequently though.  In spite of it's small size, it's quite filling.  

Even though I haven't started treatment yet, I already feel nauseous.  I know that's just nerves.  My anxiety is through the roof right now.

Wis

Wisteria83

Mollymaude said:

Wisteria

the other people replying to your post were very complete in their replies. I agree you should ask for clarification on the radiology report but on the other hand don't get too caught up in it if you know what I mean. I guess the important question is: "does this radiology report change my prognosis?" My tumor was about the size of a chicken egg and was very painful, after my oncologist said I couldn't take Tylenol and ibuprofen I ended up on oxycodone pretty quickly. I honestly can't remember what number came after the T For the staging But it was a largish tumor. I took the 5FU and did fine with it. I didn't like the port or the I fusion week of 5FU but it was doable and if you need to do it because of finances you can get thru it fine. 

Change prognosis

Hi, You're right. I shouldn't get too caught up in the details, but I'm just grasping at everything and anything right now.  Truthfully, it doesn't change my prognosis or treatment.

As the treatment date gets closer, the more nervous I'm getting.  I'm not even looking down the road post treatment...it's the pain I worry most about.  

Wis

Phoebesnow

Wisteria83 said:

Change prognosis

Hi, You're right. I shouldn't get too caught up in the details, but I'm just grasping at everything and anything right now.  Truthfully, it doesn't change my prognosis or treatment.

As the treatment date gets closer, the more nervous I'm getting.  I'm not even looking down the road post treatment...it's the pain I worry most about.  

Wis

Pain

I had no pain before treatment.  I was a stage 2  almost 3 because of size.  I had no pain until the end of week 3 when the burns kicked in. I took the painkillers and it took the edge off.  I suffered more because I have another condition ataxia.  There really are people here who do just fine, work, no pain pills, minimal to no burning.  

Dominiq

Phoebesnow said:

Pain

I had no pain before treatment.  I was a stage 2  almost 3 because of size.  I had no pain until the end of week 3 when the burns kicked in. I took the painkillers and it took the edge off.  I suffered more because I have another condition ataxia.  There really are people here who do just fine, work, no pain pills, minimal to no burning.  

Pain

I was very anxious before starting the treatment as well. I am on week 2 and dealing with just a little nausea. I am less anxious this week. You get used to a new routine. I did not like the idea of the port either but I am doing just fine with it. It was just a little sore the first couple days. Best of luck with your first week. Dominique

tanda

Wisteria83 said:

Thank you

Hi Pat, thanks for your response.  I'm glad to hear that your wife is getting finished and you've had good results so far.  She sounds like a trooper!  She's lucky to have you do her reading for her too.  My husband is super supportive, but I'm the one that's doing all the reading...that's fine, because he's a great cook!

I've been disabled since 2006 and have only Medicare for insurance and Silverscript for part D.  Silverscript won't cover Xeloda at all, and when I looked at their site to see, they said it would cost over $58,000. out of pocket.  That's ridiculous.  I'm not Trump or Opra.  I'm wondering if Medicare will cover it at all...still checking.  I also would prefer to spend money on a post-recovery cruise...or a trip to Scotland...I've always wanted to go there.

I've been told that I have great veins, and I'd like to keep them that way, so if it comes to needing a port, I'll go that route if I have to.  

I'm using the high calorie ensure and boost.  I may need to drink it more frequently though.  In spite of it's small size, it's quite filling.  

Even though I haven't started treatment yet, I already feel nauseous.  I know that's just nerves.  My anxiety is through the roof right now.

Wis

Wis

Hi Wis,

I am on Medicare with an AARP Medigap supplement and SilverScript Plan D.  SilverScript does not cover Xeloda BUT IT SHOULD BE COVERED BY MEDICARE PLAN B (many cancer drugs are covered under Medicare Plan  

The out patient  pharmacy at my cancer center provided Xeloda, at no cost to me.  I feel very fortunate to have had Medicare; all aspects of my treatment were covered (proton radiation, physical therapy and some brief home care services after treatment)  I was also given some Aquaphor with lidocaine, domboro pads and soaks,etc by the nurses.. I just bought alot of overthe counter creams and sanitary pads,etc.  Doctors often have no idea about the cost of meds and other things.  There must be a place in your treatment center that can clarify some of these issues about cost. 

I don't know the details, but there is some kind of an issue about chemo being given in a private oncology office vs an out patient hospital site.

https://www.goodrx.com/ this site offers free coupons that can be used at pharmacies for drugs not covered by your insurance....you can type Xeloda and get a rough idea of costs;  Xeloda(capecetabine) may have a generic; also pharmaceutical companies do have programs to lover the costs of their drugs.  Drs initiate the request.

Where do you live and where are you being treated? 

Wisteria83

tanda said:

Wis

Hi Wis,

I am on Medicare with an AARP Medigap supplement and SilverScript Plan D.  SilverScript does not cover Xeloda BUT IT SHOULD BE COVERED BY MEDICARE PLAN B (many cancer drugs are covered under Medicare Plan  

The out patient  pharmacy at my cancer center provided Xeloda, at no cost to me.  I feel very fortunate to have had Medicare; all aspects of my treatment were covered (proton radiation, physical therapy and some brief home care services after treatment)  I was also given some Aquaphor with lidocaine, domboro pads and soaks,etc by the nurses.. I just bought alot of overthe counter creams and sanitary pads,etc.  Doctors often have no idea about the cost of meds and other things.  There must be a place in your treatment center that can clarify some of these issues about cost. 

I don't know the details, but there is some kind of an issue about chemo being given in a private oncology office vs an out patient hospital site.

https://www.goodrx.com/ this site offers free coupons that can be used at pharmacies for drugs not covered by your insurance....you can type Xeloda and get a rough idea of costs;  Xeloda(capecetabine) may have a generic; also pharmaceutical companies do have programs to lover the costs of their drugs.  Drs initiate the request.

Where do you live and where are you being treated? 

Medicare

Thank you so much!  I hope to find out today if the Xeloda will be covered.  If Medicare part B will cover it...that will be wonderful!  I'll ask if they have an outpatient pharmacy where I go.  I live in eastern NC and my treatments will be through Carolina East Health System.  I'll be having radiation in New Bern and chemo in Pollocksville.  There is one main medical center in New Bern.  It's a small hospital with an Oncology Center, and in Pollocksville there is an Internal Medicine satellite office that offers many services.  I live pretty much in the middle of nowhere, but it's only a 30 minute drive for treatment.

In spite of it being a relatively small community health resource, they seem to have it all together and are keeping up with advances in medicine, so I feel confident in their ability to treat me.  I asked the medical oncologist how many patients she sees with the same cancer as I have and her answer was 3 per year.  I don't think that's very many at all, but given the supposed rarity of this cancer, maybe that's normal.

I just moved here two years ago from CT.  I did wonder initially, if I should go "home" for treatment, because I know I have more options there.  Teaching hospitals like UCONN I know from experience, are quite good, but this is home now, and I'll be more comfortable here, even though most of my family still lives in CT.

Thank you for the link to goodrx.com.  I'm going to check that out as well.  

Wis

Wisteria83

Phoebesnow said:

Pain

I had no pain before treatment.  I was a stage 2  almost 3 because of size.  I had no pain until the end of week 3 when the burns kicked in. I took the painkillers and it took the edge off.  I suffered more because I have another condition ataxia.  There really are people here who do just fine, work, no pain pills, minimal to no burning.  

Pain

Phoebe, I hope I can be one of those who don't experience  a lot of pain, but my body doesn't deal with pain well at all...especially burns.  The smallest burn from cooking can cause me extreme pain if I allow air to touch it and don't keep ice on it for hours.  I don't know why I'm made that way. I try hard not to be a whiney baby about it, so when I have pain, I tend to want to be left alone to deal with it.  Once, I got burns on my hands from chopping hot peppers and I was miserable for hours after and it totally ruined the dinner with company.

I'm grateful that my dr. understands this and he's promised to do everything he can to make treatment more tolerable for me.  

Wisteria83

Dominiq said:

Pain

I was very anxious before starting the treatment as well. I am on week 2 and dealing with just a little nausea. I am less anxious this week. You get used to a new routine. I did not like the idea of the port either but I am doing just fine with it. It was just a little sore the first couple days. Best of luck with your first week. Dominique

Anxiety

Dominique, I hope that I can be like you and that the anxiety will lessen as I proceed with treatment.  Just reading about all the possible side effects is discouraging...I know that I probably won't experience all of them and I'm probably making more out of this in my mind than it warrants.  Still...it reminds me of something my mom told me about childbirth..."the first time you're afraid because you don't know what will happen, and the next time you're afraid because you do know."  So while I'm glad to be armed with knowledge of the possibilities, at the same time, knowing that things may happen can be quite frightening.

lp1964

Dear Friend,

Just wanted to wish you good luck with your treatment. 600-800mg ibuprofen 3 times a day worked great for me for my pain which was very severe. Radiation completely eliminated the pain. Ask your nurse and pharmacy about prescription assist programs. I made good money and Xeloda still cost me like $6 per month. Do a search on that. 

Hang on hold on, everything will be fine!

Laz