The demon has gotton out of control

[freshair]

Hi everyone,
Just want everyone to know that I haven't posted much cause it is very uncomfortable sitting at the computer and I have had a lot of energy loss. I have awful urinary problems where it is suggested that if it totally gets out of control I will have tubes put in the kidney and the urine bag. The cytoxan didn't work. It has spread all over again and is in the liver. It also spread into the bladder and could go into the rectum next.

This is such a demonic disease. So now I am going to try oxiplatin and 5FU. And after that maybe an excorist is needed. :) We must keep our humor. I was so depressed yesterday after hearing all this and slept it off. The most challenging part is not letting the cancer get us down and out. I will know when "realistically" chemo won't touch this.

Sending prayers to everyone (have been for Yvonne, Becky, Marie and EVERYONE and can't post that much.  Deeply saddened to loose some wonderful women on this forum.

Love, Helen

[Stage3overseas]

My mom's cancer spread too.  To her liver, lungs and abdomen.  I posted about Fuda Cancer hospital in Guangzhou China last year- and my mom actually went there for treatment.  She's from the Philippines- a 2 hour flight-  OK here's history again- so she was stage 3c Jan 07 and did Chemo Carbo Taxol which ended in June.  She was on remission until CA 125 rose rapidly in Nov (from 14 in Sept. to 123  in november).  She had Caelyx in dec. but her ca 125 rose to 230 so she opted to go to China.  She checked in at Fuda hospital Jan 1st.  They did a PET CT scan, where they discovered all the spread.  They did gendicine treatment, cryosurgery in her lung tumors, and currently on immunotherapy.  She is doing well now (was critical after cryosurgery because her blood count went down- but they're all back to normal now). She will be flying back to the Philippines on Jan 21 (as per her doctos)- if the ultrasound goes well today.  She will go back to Fuda 3rd week Feb for check up and more treatment if needed.  She will not be on chemo for now.  I just wanted to share this with everyone- LEt's all hope and pray this works.  The doctors were positive despite the spread.  I will keep everyone updated. Again here is the link to the hospital's website:
http://www.orienttumor.com/ENGLISH/index.htm
I hope and pray we find something to control or better yet cure this disease.

[Lafnatitall]

We are in a constant circle with different ones in the middle...I feel privileged to be a part of it.

[Curious Daughter]

I am praying for you all.  You're so right...this is such a demon, this disease.  

My Mom is on Doxil and I will watch for those side effects.  They never mentioned taking anything like COQ10.  I need to find out about that.  Her mugascan was borderline, so taking something that could help her may be the best option.  She's on coumadin....do you think she can still take COQ10?

[Brownie3321]

Oh Yvonne and Helen, please, please know I am praying for both of you. I am so sad to read your last posts and I support your decisions to do whatever you feel is best for your quality of life. You two are very special women. With the deepest respect and love, Deandra

[learninboutlife]

Room for another? -- I'm joining the circle too! Sending loving prayers and hugs your way Helen!

~Fran~

[Mary 53]

I posted the other day to you and somehow lost the post. I have been thinking of you since reading this post last week.

I am in the circle.....

Love, Mary

[freshair]

Thank you everyone for your positive responses and the prayer circle. I love that. Insurance acceptance is going on, I had to have a heart clearance today with an echocardiogram, EKG and cardiologist. The cardiologist says heart is OK. So it is a go. Will fight with this new combination. The support here is so wonderful. We cannot let this cancer take our emotions. We must not let that happen. It is sometimes very difficult when under treatment. Yvonne--maybe you will last a lot longer. With my drug assay test it showed a lot of chemos will not work. Only you know. I am wishing you strength and praying you get out of that depression most of all.
Love,
Helen

[YvonneS]

You are right.  You kow when.  I have made tht decison.  Go back to my Ono on Tues.  I just can't do this anymore.  My hair is out - again. Like you, I can't sit at the computer.  Depression is tough.  Most of my family are supporting my desision.  One son, who lives away and hasn't been here for the chemo doesn't understand.  You are wonderful women and none of us deserve this.  I get angry with all the breast cancer stuff, because it is like they ahve forgotten us.  But, may all there pressure do something to cure that.  How sad we don't all react the same to these drugs.  God bles you.  I will post wehn I feel up to it.  I love you each and every one.  Yvonne

[SimplyStar]

My daughter is on doxil  has had 8 infusions so far. She was dx July 2006  had the 6 basic chemo  finished in Nov 2006, recurred Feb 2007 with 3 small lesions found on the abdominal wall, went on a trial that did not work Topotecan and tykerb,  started her on doxil 80 May of 2007, they did not tell her about the foot and hand syndrome side effects and after the second infusion she developed very sore feet and hand blistering.  We then found out about the cooling needed during infusions and now that is used. she was off work and very much in pain for weeks with the feet, they reduced her chemo to 60 since then,   I suggest you google the Doxil site and read how to prevent  most of the side effects.  avoid hot water, hot spicey foods, exercize day before and several days after,  COQ10 is suggested to take daily to prevent heart muscle damage, you should have an EKG prior to taking Doxil. Leslee takes quite a few suppliments to help the immune system and high amounts of Vit C 2500 mg per day, to ward off infections. Multi vitamines, cranberry capsules, sage, ginger and green teas, she only lost 2 weeks of work with the feet, and since has gone back to full time at work. she has a very active job, dealing with people with disabilities, she is a supervisor and has full charge of them from 8 to 3 daily, work, toileting, feeding, exercize, activity times.  Her CA125 started at 864, went down to 7  with the first chemo,  crept up to 65  prior to trial,  then kept going up till just last month, going down now and is at 224. Doxil is good  but please read and know what the side effects are and go prepared. the COQ10 is important too. Good Luck  will answer any questions you may thing of, kinda late here right now and I can't get to sleep. also make VERY sure the nurse that starts the infusion knows what she/he is doing, Doxil going into the tissue of the arm causes tissue damage.  Read as much as you can about it first, and make sure they know what they are doing. Ask for the ice packs to the ankles and wrists.  Usually takes about 1 to 2 hours per visit, she has hers every 4 weeks.   Marty

[Kimchi]

I know there are loads of people who have or are taking doxil ..The above titel may not get you as many replies on your question, so maybe post a new topic .  Also suggest you try researching on the archives.    

[Petey388]

anyone on doxil???

[BeachGal7]

Hi Helen, It's being positive that's going to pull you through.  Jatoo's wife Melody had some promising treatment.  This will hopefully help you too.  Take care..

[nyc lady]

I am sitting here with my mouth wide open and tears in my eyes....Let's hope that you are as lucky as Jatoo's wife and the treatment works for you.  More then anything, I want you to be pain free...if you need anything, I am right here, I mean that!!!!!

Love,
Pam

[butterflytc]

so sorry Helen, you are a real trooper, include me in the circle too, and know my prayers are with you.

[dustinsmom2]

i am so sorry that the test results came out badly, if you can make room in that circle for my family and myself we will continue to pray that this new regiman works, i have heard alot of good things about it as well, and here is a big ((((hug))))

Erika and family

[dian07]

I will join the others holding hands in prayer for you.  Jatoo offers some real positive information.....Yeahh!!!  If it works for Melody, and it has, let us not give up hope as good news just might be around the corner for you, too.
Peace.
dian

[Jatoo]

Just to let you know that my wife's CA 125 is finally normal at 34 after two (2) cycles of 5FU and Oxaliplatin. Let's pray that it will work for you.

Jatoo

[Tybear]

I am really sorry to hear of your latest news. I had to laugh though, when you suggested an exorcisim...too funny! This disease really is like a demon... I hope you find something that works for you soon and brings you the relief you deserve.
I appreciate the prayers and want you to know you continue to be in mine as well...
Becky

[Jan214]

"A Cheerful Heart is the Best Medicine"  I don't know who wrote that old saying but I believe it is true.  You have a cheerful heart in abundance, so I am sure this next protocol will be the one.  My husband and I will stand firmly with you in that circle of prayer.
Jan

[baguba]

I am so angry now I could cry!  You just stay rested, positive and keep that sense of humor.  We'll all do the rest in the prayer department and together we'll get through this.  I will pray extra hard that your new chemo will do the trick.  Sending love and positive energy to you, Judie L)

[newlifegal]

I'm so saddened to hear what you are going through. I'm asking God to send you His peace as you continue to perserve.

Christa

[coogeegirl]

Make room in that circle for me as well!!! I am sending you lots of positivee energy and hoping that the latest chemo shoots that cancer down in flames.

Every good wish to you Helen

Jenny

[Brownie3321]

Helen, I am so sorry, I really am. I am also so upset by this. The h@ll with this disease! Make room in that circle for me and my whole family including extended, because we are all praying for you and wishing for a cure to sh!tty disease. We get enough people pushing, maybe we will get what we are looking for. Try and stay humerous Helen, I know it helps me. With love, Deandra

[Kimchi]

Been waiting all week to hear your results and I am so pissed that the cytoxan did not work...worse part is that this med had not affect on stopping the cancer from growing.  I feel like you wasted so much time and hope...really ticked off about your situation.   Get started on the new meds right away.  oxiplatin and 5FU seems to be working for Melody, I hope it will work for you too.
Sending you positive eneger from the Land of Smiles