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cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

My world changed on June 7th 2011. Things have been moving pretty fast.
June 3 colonscopy
June 7 Anal Cancer
June 10 CT/Pet Scan
June 14 Meeting with my two wonderful doctors and results of PET scan
June 16 Lymph Node biopsy in my right groin
June 21 Results are great - node is clear - I get my tat's and I am simulated to the machine
June 24 PICC line will be inserted
June 27 Radiation and Chemo starts.

I am nervous about the picc line. Can someone walk me through what will happen or I guess I am really asking how painful it will be. Thanks to everyone that is on this site. It is YOU who go before us that makes it easier for us and future cancer patients to survive. :)

duckyann
Posts: 162
Joined: Jun 2009

Hi cph1127,

I want to welcome you but also I wish you did not have to be here under these circumstances. I really do not know anything about the picc line as I had and still have a port in my chest. There are others that had the picc line and I am sure they will chime in soon. Please come here often for any thing; questions, to vent, support or whatever you need. There are wonderful people here to help you through.

Take care

Nancy

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Thank you so much.

z's picture
z
Posts: 1251
Joined: May 2009

Welcome, and sorry you had to find us. Its great that there was no spread. I completed tx on 6-30-09, so I'm coming up to my 2 year aniversary. The 1st thing my gp surgeon said was, this is a curable cancer and if I had to have a cancer this is the one thats curable.

I also had the port and still have it. I will probably take it out next year when I have my colonscopy and do the 2 things at once.

I know like Nancy said others have had the picc line and will probably post. You may also do a search on this discussion board for picc and I'm sure something will come up.

I wish you well, and keep us posted. Lori

mp327's picture
mp327
Posts: 2903
Joined: Jan 2010

I wish you didn't have a reason to be here, but you've found a place for lots of support. It's great that things are moving briskly towards the beginning of your treatment, as I was so anxious to get mine started and hated all the waiting! I am coming up on my 3-year post-treatment anniversary in September. I had a port also, but I know many people get picc lines and have no problems with them. I'm sure someone here will chime in who has experience with one. I wish you all the very best and hope you'll keep us posted. This cancer can be successfully treated, so stay positive and lean on us to help you get through the rough spots.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Thanks so much I read your comment to New Here and was so glad to hear everything that can help with my treatment. I do have great doctors who have told me most of this stuff aready but I would much rather hear it from someone who has gone through it. How many days did you have your Chemo? They have scheduled mind the first four days of radiation and the last four days of radiation. I still do not know how many days of rad. I heard maybe 29 - 33 days. I am a T-1-2, NO My chemo treatment is Mitomycin with 5-FU. I will be on a pump for the chemo at home.

Did you work while you were doing chemo and rad? I am an accountant so I sit all day. What I have read I am beginning to wonder if I will be able to work after 3 weeks in.

Again thank you so much for your help and putting yourself out there

mp327's picture
mp327
Posts: 2903
Joined: Jan 2010

To answer your question about my chemo schedule, I received it on week 1 and week 5 of treatment, which is standard protocol. You may want to clarify with your doctor when the second round is to be done.

I am not employed, so working while going through treatment was not an issue for me. But I will say that had I been working when I began, I would have had to take time off--there's no way I could have worked, especially towards the end. Having said that, keep in mind that everyone's experience is different and your side effects may not be as severe.

I wish you all the very best and hope you'll keep us posted on how the last half of your treatment is going.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Thank you for your post and congratulations on your 2 year aniversary! My surgeon said the same thing to me. I told everyone that I had the good cancer and they looked at me like I was crazy. Well maybe I am but I truly feel that way.

May I ask why you still have your port? Also did you work when you went through your treatment?

Again thank you for taking the time to post to me. God Bless

z's picture
z
Posts: 1251
Joined: May 2009

Hello, I still have my port because on a follow up scan for the anal cancer, a nodule was found in my lower right lung. I had the lobe removed via vats and the divinci robot. It was a squamous cell carcinoma just like the anal cancer but not a metasis as there was no hpv found in the nodule, whereas, in the anal cancer there was. I had the vats on 9-23-10. I didn't require chemo or radiation for the lobectomy as it was a stage 1a primary lung cancer, and the standard treatment is to just remove it. I feel great now. I sm so fortunate that both of my cancers were found early and both have an 85% cure rate.

I took off work for 7 weeks for the anal cancer treatment, and it took a while to get my stamina back. I have a physical job. Now even if I could have sat all day, I know I would have been too tired to work. You have to give your body a chance to rest whenever it needs to. The chemo made me tired and the radiation at the 3rd week made me tired too. You might not get tired at all, everybody is different. I wish you well, and please keep us posted. Lori

Angela_K
Posts: 374
Joined: Jan 2011

I had to live 200 miles from home during treatment, so I did not work. I did volunteer at the clinic and hospital where I was receiving treatment for about 3 weeks until my blood counts began to drop and I was ripe for infection. I did not feel like doing much of anything the last week or two of treatment and for about two weeks following treatment.

EVERYone's experience is different. Try not to worry too much about what lies ahead. Just take one beautiful day at a time. I remember thinking during most all of my treatment "This isn't near as bad as I thought it would be!" And looking back on it (I'm 6 months post)I don't see it as being THAT bad. Perhaps it is mind over matter?

I approached my journey with an open heart and an open mind, knowing that I would a better person for having experienced this . . .and indeed that's where I am now.

And you will be, too. You will get through this and you will be okay. Bright blessings to you. Let us know when you need us for support.

Angela

Angela_K
Posts: 374
Joined: Jan 2011

I had to live 200 miles from home during treatment, so I did not work. I did volunteer at the clinic and hospital where I was receiving treatment for about 3 weeks until my blood counts began to drop and I was ripe for infection. I did not feel like doing much of anything the last week or two of treatment and for about two weeks following treatment.

EVERYone's experience is different. Try not to worry too much about what lies ahead. Just take one beautiful day at a time. I remember thinking during most all of my treatment "This isn't near as bad as I thought it would be!" And looking back on it (I'm 6 months post)I don't see it as being THAT bad. Perhaps it is mind over matter?

I approached my journey with an open heart and an open mind, knowing that I would a better person for having experienced this . . .and indeed that's where I am now.

And you will be, too. You will get through this and you will be okay. Bright blessings to you. Let us know when you need us for support.

Angela

z's picture
z
Posts: 1251
Joined: May 2009

Double post.

Captain11
Posts: 88
Joined: Apr 2011

Hi, cph 1127... Sorry you had to find this site. Keep the faith and keep a good sense of humor... it really is the best medicine. My husband had a picc line put in, but he was sedated and totally out of it. I had a port put in. It was not painful... you will be sedated. From what I understand, the doc cuts open a small section of skin in the chest area and places a little iv needle which can have several connections, this way you don't have to keep getting jabbed in the vein all the time. I think I am correct on that... I know the port is placed in the chest, usually on the right side, just above the breast, slightly under the skin. It is the size of about a quarter... the iv needle goes in there and you don't have to get multiple stabs in the veins. It doesn't hurt..
Please look at the other postings, there is a lot of helpful information and suggestions to make this easier to bear. We are all here for you and wish you well on your journey.

A few tips to begin with: Go to your appts with a family member or a friend. Write down your questions, no matter how insignificant you may think they are. Get answers..don't leave the doc's office without answers. If you get a "let's wait and see" answer, get a second opinion. My husband came with me and he did the writing for me, I was just too nervous. It looks like you will be getting the 6-week radiation series and the 1st and 5th week chemo regimen, (yes?) About the radiation: It will irritate your skin. Use the aquaphor and/or pure aloe ointment for comfort. The treatments may leave you very weak. If your body is telling you to take a nap, then do it. If you feel like you have a burst of energy, don't overdo it, because you will more than likely pay for it the next day. You may experience dry mouth and/or thrush. Get a prescription for the dry mouth, I used BMX mouth solution. Also use biotene toothpaste and rinse. Chew biotene gum, which helps with the dry mouth, keeps the saliva going. You need this because dry mouth can lead to dental problems. Also, check with your onc, he/she may not want you to floss while you are on chemo. Flossing can lead to bleeding, and that will lower your blood counts. Very important to keep up with your nutrition. Keep hydrated. You will probably experience diarhea, please take the imodium, right at the onset of the diarhea; otherwise you can become dehydrated quickly. Also you can use the BRAT diet (bananas, rice, applesauce, toast). I lost 40 of my 137 pounds, quickly. You may not feel at all like eating, please force yourself to do so. Make sure to get your protein. Carnation breakfast shakes, ice cream, peanut butter, etc. Don't worry about a regular "healthy" diet, as long as you get your protein. Drink plenty of water, very important. Exercise is also important; (even though it was very difficult for me). At least do stretching exercises. Make a to-do list and keep it handy, so that when people say "Call me if you need anything", you can ask them to pick out something on the list. Don't worry about the housework, lawn, blah, blah, blah, those things will be there, and you can put them on the list for others to help with. Ask your doc for pain meds, if you need them. There are meds for nausea; I got compazine, and it worked well... it can make you tired, in addition to the radiation and chemo. Stay in contact with family and friends... keep us posted here. Watch funny movies, tv shows, etc. Again, keep laughing. It will really help. You are not alone. It is very difficult for people to know the kind of fatigue you will go through, unless they have been through this. Keep a positive outlook. Good luck to you. God bless.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Thank you for your post. This has been a crazy 3 weeks but "If God brings me to it, he will bring me through it"

My doctors have been great so far and are telling me most of this stuff up front. I am wondering if I will be able to work through this. I am an accountant so I sit all day. Did you work?

Thanks again for putting your experiences out there to help others.

Captain11
Posts: 88
Joined: Apr 2011

I stopped work when I started my radiation. For my job, I drove all the time and interviewed people. I went to a lot of govt installations and met with many "important" people. At the end of the day, I had to enter all my data electronically, so I was at my desk for long periods of time. My cancer was a bit more involved; so, I was out of work on FMLA, then short-term disability. Because my cancer spread, I had to go to long-term disability, which I am still on. I have been out of work since July 2009. My situation is different from yours. I started on the 31 day radiation and the mitomycin (in the onc clinic) and the 5FU at home 96 consecutive hours of infusion; (hence, the port) during the 2nd and 5th week of treatment. I should have had the port during my 1st week, but there was a mix-up while my onc was on vacation, and he didn't order the port for me prior to my getting started... anyway, that was one of the reasons I got a 2nd opinion and a different onc...who is much better, with a wonderful, compassionate bedside manner. I started as stage 3B, and it was more involved than that. I had to go on a second chemo regimen, more aggressive and a lot longer treatments...120 consecutive hours of 5fu every 3 weeks, the first day before starting the 5fu I had the chemo drug, cisplatin, injections, which lasted about 5 hours, then went home for my 5 days 5fu infusions. Because the radiation will probably make your hips stiff, it may be difficult for you to sit at your job all day...maybe you will be able to take a break every so many minutes and stand up for a while. I don't know what your job allows. I know I can't go back to mine for a while, until I get all the side effects under control.. If you have seen the other posts, you read about the stiffness, neuropathy, bleeding, butt and vaginal walls tightening, fecal urgency, numbness, loss of balance. These are all side effects, but not everyone experiences them all, just remember to keep up with your nutrition and exercises, and try to eat fruit and other anti-oxidants. Fruit juice is great, but make sure to dilute it at least one part juice to one part water. You are lucky in that your docs have given you a lot of this info up front; but unless they have gone through it, they don't really "feel your pain". One of the oncs in my clinic had cancer, so he knows what the patients go through. Please feel free to vent, ask questions, commiserate, or just chat. We all love to hear good reports, so keep us posted. I know it is scary, and I should practice what I preach, but don't be afraid. We are all here for you; and you are not alone. God bless.

duckyann
Posts: 162
Joined: Jun 2009

I did not work through treatments either. Actually I stopped working a little before due to major pain. I did start back to work 1/2 days 5 days post treatment.

I still have my port because my doctors rule of thumb is 2 years. I am hoping to get it out after my 2 year post treatment exam on June 27th. Hopefully all will be good and it can come out.

Nancy

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi - First time poster here, although I've been lurking for a while now. I was diagnosed in Sept 2008, stage 2, no node involvement, and went through the standard 6 weeks of radiation with chemo (5FU and mitomycin C) during weeks 1 and 5. Clear since then.

About working - with the help of my employer, I was able to work full time for the first 4 weeks. My employer has a special program where employees going through long-term treatments, like those for cancer or dialysis, get paid for the time they are at the treatments, and at doctors' appointments too. I have a desk job - some lab work, but mostly I'm at the computer. I also am able to work from home, which helped a LOT. And I'm fairly close to my treatment center, about 30 minutes. I'm not sure I would have been able to work 40 hours/week without the help of my employer paying for the time I was away from work. I also don't think I would have been able to work full time if I had to travel further to the appointments.

Around the end of week 4 of the treatment, I had to cut down to 20 hours/week due to fatigue and also because the radiation burns were starting to bother me. I stayed at 20 hours/week (a lot of that done from home) for several months after treatment.

Do you have to decide now? How flexible is your employer? If possible, it would be a good idea if you could decide on a weekly basis...don't know if they'll let you do that or not.

Good luck! And stay optimistic! This thing CAN be beaten!

patacz
Posts: 64
Joined: Sep 2010

Hello cph1127,

I took time off work, and I also work on a computer all day, and I recomend it. I was determined to fight the cancer 100%, so I made that my full time job. I didn’t want to have to worry about work related issues and wanted to be rested and allow my body to do its work. It might be different for other people, but for me this was a good option because the Chemo made me very tired and at the end of the radiation treatments sitting down was very painful - I was so burned.

I am glad you trust and like your doctors, that is a blessing. Faith is so crucial in times like this. I am wishing you the best and keeping you in my prayers.

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

i had a picc line. it did bother me but most people said that they did not even know it was there. i would forget that i was hooked up to a bag and it would pull on it but soon figured out how to clip it so that it would not pull. please put a stocking thingy over it to help keep it stable. it took me some time to learn to sleep with it but like i said everyone else had no problems. then they had to redo it because it had caused a slight infection. you have to flush it and clean it. i was by myself most of the time so i just went to MDA and had a nurse help me do it. i made it through it but the very minute that i was finished with my last chemo , i had them pull it out!!! BIG MISTAKE. the very next day, i was so sick from the tx that i had to be taken to icu where they had to put many IV's in me . if i had kept the picc line they could have put in fewer IV's. so keep it a little while until you are sure that you will not crash and have to get IV's. You will be fine. hugs to you sephie

gratefulmom
Posts: 15
Joined: Feb 2011

you didn't mention how young or healthy you are,so I will add this. I was 47 when diagnosed with stage 3B anal cancer. I am a self-employed hairdresser. I missed about 3 weeks of work altogether because I became so burned from my radiation that I couldn't even sit up in a chair. When I rode in the car I layed on the back seat, but I also healed very fast with the help of silver cream.My treatments had to be stopped twice. Once because my white counts were too low and once to let my burns heal some. This is a very painful treatment but If you are healthy and keep up your protien you will heal quickly, and it will bee over with before you know it. I am now one year out of treatment and have no problems at all. Scar tissue is all gone,can eat anything, and sex is great. I consider myself very blessed,and I wish the same for you. Good luck and God bless

gratefulmom
Posts: 15
Joined: Feb 2011

you didn't mention how young or healthy you are,so I will add this. I was 47 when diagnosed with stage 3B anal cancer. I am a self-employed hairdresser. I missed about 3 weeks of work altogether because I became so burned from my radiation that I couldn't even sit up in a chair. When I rode in the car I layed on the back seat, but I also healed very fast with the help of silver cream.My treatments had to be stopped twice. Once because my white counts were too low and once to let my burns heal some. This is a very painful treatment but If you are healthy and keep up your protien you will heal quickly, and it will bee over with before you know it. I am now one year out of treatment and have no problems at all. Scar tissue is all gone,can eat anything, and sex is great. I consider myself very blessed,and I wish the same for you. Good luck and God bless

gratefulmom
Posts: 15
Joined: Feb 2011

you didn't mention how young or healthy you are,so I will add this. I was 47 when diagnosed with stage 3B anal cancer. I am a self-employed hairdresser. I missed about 3 weeks of work altogether because I became so burned from my radiation that I couldn't even sit up in a chair. When I rode in the car I layed on the back seat, but I also healed very fast with the help of silver cream.My treatments had to be stopped twice. Once because my white counts were too low and once to let my burns heal some. This is a very painful treatment but If you are healthy and keep up your protien you will heal quickly, and it will bee over with before you know it. I am now one year out of treatment and have no problems at all. Scar tissue is all gone,can eat anything, and sex is great. I consider myself very blessed,and I wish the same for you. Good luck and God bless

sandysp's picture
sandysp
Posts: 788
Joined: May 2011

Wow - especially the sex part! Weren't you in pain before the treatment? I have been in pain with the tumor and was in a lot of pain with the ovarian cysts they removed after my CT scan revealed masses in the pelvic bowel. I already feel so much better in my lower abdomen, I can't believe it. Even with the surgery. But reading you post really helps me. I start treatments July 3, I think (after the official holiday). I am 61 and probably could have kept working when I was your age, but I sell real estate and the driving was causing me to be a threat to myself and others! I told my boss I'll be back in the fall. Luckily my realtor friends say it hasn't been that much going on to miss. Got my port today and tattoos this week too. These things probably just seem incidental to you but it's been a big week for me.

sandysp's picture
sandysp
Posts: 788
Joined: May 2011

Wow - I was diagnosed May 5 and start radiation and chemo after the fourth of July weekend. Had some complications and even surgery along the way, though. Did you get your port? I got mine today. I'm glad I have some down time. They say the tumor has not changed in size, so that's good. My husband is going to California for his Mom's 90th birthday. I'm staying home with the dog and then taking a trip to Holy Cross Monastery, where I like to hang out for true down time. It is on 20 acres along the Hudson River where the air is startlingly fresh! I will say prayers for all of us.

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