Liver and WG

[Doug]

Yes, hi, Judy! And ditto from me on hope that it isn't a flare. Or anything that can't be controlled with hospitals, 15 specialists, and a good medical plan.

[mucjud13]

Andrew,
Thank you for your concern. I had tests yesterday. At VA from 8am -4:4:30pm.
Had Infusion of Zometa too. This was my first. I start Exterior Radiation
next week June 25, 2009 for my Breast Cancer. I will be getting it 5x a week for 6 weeks. Kind od scared but been throu worse with WG.
I'm afraid of getting flares while being treated with radiation due to swelling and bacteria infections. I just got over a bacteria infection during recovery of breast surgery.
The MD said he didn;t realize I was on a steroid(I only plasted it on top of my paperwork and his rewuired meds sheet i had to make out!!! Jerk).
I have been trying to set up rides to VA with the Cancer Society. They VA keeps changing my appointments(3x since yesterday for just my first session).
I feel alone with this whole thing and trying to reach out here and yahoo. Up to 3 weeks ago I could not find any of you guys in my 5 years of WG.
So, thers is hope for me here for support and to help to others with this weired and painful disease.
Again, Thanks for you email.
Judi

[crackers]

my wg started jan 2007 in sept 07, while undergoing a wg related colonoscopy they found a tumour.this was removed but the following day my bowel perforated which resulted in emergency surgery,a week in intensive care and a further 2 weeks on a general ward.i started a 24 week course of chemo in the december finishing in june of last year.while all this was going on the wg kind of took a back seat without any serious repercussions.at the moment the breast cancer has to take priority, treatment wise,as the main threat to your health.all the way through my episode the wg was monitored but as it didn't worsen they concentrated on the cancer.i know it's a scary time for you but don't feel alone.when you found us here you also found dozens of new friends.friends who understand how you feel and really care about others.PS had my second 6monthly ct scan last week and no cancer.so be positive,good things do happen.
john.

[mucjud13]

Thank you so much John. I needed to hear what you said about my cancer.
It's been overwhelming.
Yes, I am so glad I found here and all of the nice people like yourself that speak with experience, care and understanding.
Judi

[jola57]

I had breast cancer surgery last year, fortunately it was not metastatic and no further treatment was necessary, but a cyst festered inside and exactly a year later had to have more surgery to get the cyst out. I was on 35 mg pred and chemo for WG at the time and ortunately all was and is well. So keep positive thoughts and enjoy our little get togethers

[coffeelover]

Wow Jolanta! I woulod never have guessed. YOU are the inspiration for positiveness. I will follow your lead
Lisa

[mucjud13]

Hey Jolanta,
Thanks for the support. If I may ask you...what chemo were on while tx for Cancer and what chemo are you on now?
I am starting radiation next week, they keep backing up my start date due to needing to consult more on my plan. I will have 5x a week for 6 weeks external radiation(beam). I have been warned of infection, rash, due to my labs not that great.
I have these tatoo green marks over both breasts and feel like it's Halloween! I just have to take my top off and beam!!!!!lol
You are so positive. I am deep down but I feel like I have been hit with too much and having to make too many decisions about all this.
Like everythingis on hold until this tx is over. I got a call from Cancer Support and they are arranging transport for me-I think. I got a call to day from a nutrionist, it was really nice of them. I seem have everything covered they said as to antinflamatory foods. I'm just trying to Let go and Let God I guess.
Someone said here I need to stay focused on my treatment and let everything else go.
Thanks for the support and I hope I can be of help some time too.
Judi

[jola57]

Hi Judi, we all inspire each other at one time or another. You inspire me now by being able to talk about letting go in face of what will come. I and others here are with you every step of the way, we can't be there in person but know that we are there in spirit. My cancer did not need treatment so I was only on cyclophosphamide
150mg, 35mg prednisone and bactrim at the time which is probably why ithe cycst formed. I am lucky that I have no side effects. I will be thinking of you and wishing a quick recovery. My mammogram is next thursday so I keep thinking positive thoughts and hope that the long thick lump I feel is just a calcified cyst

[mucjud13]

Hey Again Jolanta, I Will Be Thinking Of You With Positive Visuals Of Your Lump Being Non Threatening.
Today, I Got Some Further News About My Kidneys. My Labs Were Not Good At The Va. St' Joseph's Hospital/cancer Dept. Called Me To Schedule (per Va Request?) For An Immediate( Within A Few Days) A Ct Of My Kidneys On Monday June 22, @ 10am/ No Food Or Drink For 24 Hours.
I Was Just Telling Someone That I Felt Better Today Or Having A Decent Morning And Then The Call Came And "jolted" Me Again.
Put Me Right Back To When I Was Seeking All Kinds Of Answers About Everything And John Suggested Focus Just On Your Cancer Tx Right Now. He Was Right And I Refocused But, I Keep Getting A Call With "jolts Of New Issues Or Further Complications.
Maaannn! I Can't Even Start My Radiation Tx Yet And All This Other Wg Stuff Symptom Stuff Keeps Coming Up.
I Do Not Know Right Now How You All Do It!!! I Just Don't...
I Have A Ride For Wednesdays(for 6 Weeks) During My Radiation Tx But Nothing Yet For The Other Four Days, The Breast Cancer Support System Gave Me Another Agency To Contact. I Am Just Thinkingo The Hell With It And Take Myself And Just Remain Stressed And Get It Over With.
I've Been Getting A Bad Burning And Itchy Sensation Under My Skin Inside The Top Layer Of Skin On My Arms At Night. I Can Feel Little Bumps Under My Skin(granules,mini Lymph Nodes?). I Haven't Told Anyone Because It Comes And Goes For Past 5 Years And Thought It Was Nerves And They Would Tell Me To See A Psychiatrist So I Have Said Nothing And Tolerate It But Now I'm Thinking It Maybe Related To Wg(i Did Some Searching And Found That There Are Lymphs At Tand Near The Elbows And In Very Rare Cases They Found Granuals Under The Skin That Flares In Wg.
Have You Heard Of This Or Know Someone Who Has. What A "b" I'll Tell Ya!
Please Let Me Know How You Make Out, I Will Pray And Visualize Like I Said That It Is Benign.
Judi

[mucjud13]

Thanks Doug For Your Support And Humor!!! I Wish You Well Too.
Judi