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pdees

z's picture
z
Posts: 1250
Joined: May 2009

Hello pdees, I noticed your post in the older ones and just wanted to welcome you to the board, but I'm sorry you had to find us. Just wanted to say this is a curable cancer, and you can do this. I wish you well. Lori

pdees
Posts: 13
Joined: May 2011

I have only had 5 days of treatment and already had dull ache in lower back, hips and calves of my legs. Yesterday my throat became very sore. It was never throughly explained about the difference between the port and the picc line. When I asked, they just said "its your choice". I chose the picc line and so far no problems except they didn't set me up to have the dressing changed on a weekly basis like I was supposed to have. When the cadd pump was taken off, the nurse noticed the dressing hadn't been changed, so she did and set it up for me. I have worked at Oncology as a Volunteer for 8 years. Never thought I would be a patient. I still have a long way to go with my treatments (30 radiation treatments altogether and one more round of chemo on the last week). I will probably be coming back and looking for more answers before I get through. I am so thankful for having a place to go to for this type of cancer because this is not that well known. I am also experiencing little red marks on my forehead and my scalp itches. Anyone having this problem?

z's picture
z
Posts: 1250
Joined: May 2009

Hello, I chose to have a port, but there are many that went with the pic line and are doing just fine. The medical community needs to inform us of what is necessary for maintaing our health through our treatments. For most of us its our 1st experience with cancer. I had many side effects from the chemo, yet only had to take the nausea medicine once, although looking back I should have taken as needed and probably would have felt better. My hair thinned and I lost my appetite. I know the chemo goes after fast dividing cells so thats why are hair is affected and we lose it. I had the mouth sores and had to have the medicine to resolve it. You might want to ask about preventing the mouth sores, as again this is another place where we have fast dividing cells. I had the 1 myto infusion along with the 96 hour drip of 5FU 30 radiation treatments and then 1 more 96 hour drip of the 5FU. This is the standard nigro treatment. Nigro is the dr that found the treatment that cures anal cancer. Your on your way and please let us know how your doing. Lori

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

Please come here as often as you need to for support and/or information. We are all here to help you get through this and YOU WILL! It's probably been explained to you that the effects of the treatment are cumulative, so it's a good idea to try and stay on top of things. I took my nausea meds at the first hint of queasiness and they worked very well. Also, pain medication needs to be taken before the pain gets ahead of you--I did this all wrong and suffered more than I probably needed to. Make sure to stay very well hydrated--it is critical that you not get dehydrated. Swish often with a mix of water and baking soda or salt, even if you're not having mouth sores, as this will help prevent them. I don't know what's causing your red marks, but it's important that you mention this to your chemo nurse or doctor, as minor things can quickly turn major when getting treatment. Also bring your sore throat to their attention. As for the scalp itching, that was my first hint that my hair was thinning. Some people do not lose any hair with this treatment, and others lose some--I lost maybe half my hair in patches. My hair began falling out on day 21. Hang in there, you are going to get through this!

pdees
Posts: 13
Joined: May 2011

Thanks to both you and z. It feels so good to know someone that has gone through the same thing. I feel so much better. Never have been a cry baby but these last few days have been the pits but now I know how to cope with things better. I am 76 and have never had any major problems all my life till now.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I just wanted to wish you all the best with week 2. You will not have to deal with the chemo pump, so that will make things easier. Please keep us posted on how things are going as you are able. I will keep you in my thoughts and prayers.

melbas2
Posts: 108
Joined: Aug 2010

Well pdees, we can't cure you here but can share our experiences with you. I was diaganosed in June 2010 and started treatment after hemorroid surgery. Found out I was allergic to the 5F and I thought the mouth sores were gonna kill me. Keep a close eye on that. I hated what the radiation did to my body, but it did end. Once I accepted my illness, it became easier to deal with...a positive attitude helps. Now I'm battling an anemia which causes my bone marrow to eat itself...will see where this journey takes me. Keep your spirits up and check this board often for advie and moral support. I just turned 50 on the 8th, and never thought something like this would happen to me. I will keep you in my prayers.. Melodie

pdees
Posts: 13
Joined: May 2011

All day long yesterday my mouth and throat were so sore I could hardly eat anything let alone swallow. I have been rinsing my mouth with the baking soda and water and it has helped just a little. This AM I couldn't even brush my teeth because the tooth paste burned so bad. How long will this last? I have a call into my Drs nurse but that was 2 hrs ago and so far she hasn't answered me back. Other then that I am not feeling too bad. Haven't noticed my hair thinning but do have some crusty patches here and there. Head a little tender when I brush my hair. I will get through all this but just want to get it over with.

z's picture
z
Posts: 1250
Joined: May 2009

Sorry about the dreaded mouth sores. I had them too, and there is medicine they can give you and also a mouth rinse. They last about a week and then start to lessen. I didn't get any on the 2nd treatment of the chemo. Hopefully, they will call you soon, I would call them again. Lori

gratefulmom
Posts: 15
Joined: Feb 2011

I had a friend who had chemo before me and he sugessted I take L-Lysine to prevent the mouth sores and it worked real well. I had a little tenderness in my gums but didn't get any actual sores.You can buy it in any drugstore or wal-mart. As for your itching scalp, thats just your hair getting ready to fall out. I lost about a third of mine, but I noticed it fell out more where I scratched my head, so try not to scratch it. Good luck with everything.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

Stop using regular toothpaste and either use baking soda or a paste called Biotene, which is available @ drugstores. Biotene also makes a mouthwash. Neither contain anything that will burn your mouth. Use the softest brush you can get and be very gentle, as your gums may be more prone to bleeding. Also, a shampoo that contains Biotin (not to be confused with Biotene) was recommended to me for keeping the hair as strong as possible. I found mine at a GNC store under the brandname of Jason. I would recommend washing your hair as little as possible and do not blow dry.

pdees
Posts: 13
Joined: May 2011

Again I can't thank you all for all the good info. Been taking the mouth wash and lidocaine to numb my mouth. Helped some but still sore and still have a hard time swallowing. Three days later I was prescribed hydrocodone (liquid) and it has help a little. Does help me sleep better. I am like a lot of people, looking for instant relief. HeHe. It will get better and I do appreciate all the encourgement.

pdees
Posts: 13
Joined: May 2011

I thought after a week my mouth would be well. It is just very little. Side of my tonque is still real sore. Still hard to eat or drink. I take everything the Drs. have prescribed for me and even do the salt and baking soda rinse and even Maalox to coat my mouth. Every day I think I will be over this but not yet.
Phyllis

Angela_K
Posts: 374
Joined: Jan 2011

I had a mild reaction to the mitomycin four days after I had it administered (pushed the first day) which included small rash on my chest, back and bottom . . .and severe scalp itching. I used topical Benadryl for the rash and Head and Shoulders for sensitive skin for my scalp as directed by my chemo nurse. All better within 3 days. I didn't experience hair loss until almost three weeks after treatment began and remember my scalp 'aching.'

Three weeks after my last chemo week at the end of treatment, I lost more hair. I lost about 90% of my hair all together and I had a LOT to begin with. It is now growing back in with a vengeance four months out and is the same thickness, texture and color as it was before.

I had one small mouth sore on my tongue, four days after treatment started and that's it. Rinsed my mouth with water, salt and baking soda constantly three days before treatment started and during treatment.

Gulamin
Posts: 132
Joined: Dec 2010

You will get through this. Stay strong and keep doing things that you enjoy. Don't let it all take over... have some sacret time for things that you love even if its just watching your favorite movie or taking a long bath. You will do this! I just received the green light that its all gone after having been diagnosed in Nov 2010 and having gone through the same treatment as you. I am so happy. You will reach this point too. It is surely a wake up call. I think all of us went through the experience differently but the beauty of this board is that there is so much support no matter what you encounter. Sending lots of good energy and prayers.

Angela_K
Posts: 374
Joined: Jan 2011

Gulamin is so right. Don't let it all take over. Maybe start something new just for you like weekly massages or reflexology or meditation.

And EVERYone's journey is different, as individual as their cancer. Personally, I chose not to be an active part of this network until my treatment was completed in January of this year because I didn't want to hear the darker stuff and wanted to experience it all with a fresh spirit.

Like Gulamin, my (possible stage 3B) cancer is gone, having been diagnosed in November of last year. It is a highly treatable cancer!

And we are all here for you anytime you need us on your path.

Many bright blessings to you.

Angela

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

And God bless you. You are an inspiration.

melbas2
Posts: 108
Joined: Aug 2010

Hey pdees, I started getting red blotches on my arms...really bad, and even now 7 months after treatment they still come and go. My skin and my scalp itch, I try not to scratch, but sometimes it's impossible not to. I switched to Headand Shoulders Dry Scalp which seems to help and I constanly put loition on my arms and legs. It got so bad at one point my skin was breaking open from the scratching. The doc said I now have thin skin. I've also now been diaganosed with A-Plastic anemia, which is causing my bone marrow to eat itself, so I bleed very easily. They have pumped me full of horse sreum, shich is supposed to help regenerate marrow, plus I take 400 mgs of cyclesporin per day, and I get at least 2 blood and platele transfusion per month. They said the splotches r beacuse the blood is dirctly under the skin now. I hope this helps. Melodie

sissy310
Posts: 300
Joined: May 2010

Hi Pdees...sorry that you have to be in this site for the reasons you have to be here but am glad you found us as many in here have been what you have been through and are here to help and get your through this. I was supposed to have a port put in (that was my hospitals first choice) but had fevers so they opted for a PICC line. I had two, one for each treatment as I did not want the PICC line in and asked if I could do this twice. I did not find it that uncomfortable I guess and it worked for me. Some tips of what I learned from the individuals in here and on my own was to use the biotene toothpaste and mouthwash rather than regular toothpaste. I also sucked on lemon drops for nausea. The most comfort I got was from sitz baths, cool clean washcloths on my bottom and wearing very loose clothing. The dull ache sometimes could be eased by a warm bath so I combined my sitz baths with that. I do agree that finding something to focus on for yourself (a blog, or a massage or special music or a meditation place) does help. Come back as often and for anything that you need. Hang in there, this cancer is highly curable. Marilyne

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