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BiographySingle mother of 2 special needs teenagers. I was diagnosed with Primary Squamous Vaginal Cancer, Stage II in December 2007. I had no symptoms, this was found during a pelvic exam after my PAP came back abnormal which meant further testing. I went through concurrent chem/rads. I had 5 weeks of external rads along with 5 weeks of once weekly Cisplatin. I then had internal rad therapy with the SYED a month later. All was going well until this past Dec. and more testing to see if cancer was still there. Unfortunately recently out that I still have residual/recurrent cancer cells in same spot. Good news is it is still localized all other testing PET/CT, Chest Xray, and exam under anasthesia reveal no mets. I am a candidate for the Cyberknife and will start that soon, I find out 1/29/09 when this will happen. Have been given good news about this Cyberknife and it has a high success rate. Seems I’m always updating this! First line of treatment…failed me, 2nd line of treatment….failed me, 3rd treatment Total Pelvic Exenteration…...failed me, now I am going to start chemo (Topotecan) on December 9, once a week for 3 weeks, one week off, repeat for 6 cycles. This sucker is still localized, praying hard this does the trick. Cancer SymptomsI had absolutely no symptoms Surgery Description, Dates & Side EffectsExams under anasthesia for biopsies and check for mets. No side effects. Then July 2009 had to have a Total Pelvic Exenteration for persistent cancer. Living iwth a urostomy and colostomy now. Radiation Description, Dates & Side Effects25 External Rads I have had no lasting side effects from my rad treatments. I am very fortunate. Re-treated 2/16 thru 2/18 with Cyberknife for relapse. Chemotherapy Description, Dates & Side EffectsCisplatin, 1x weekly for 5 weeks. Experienced fatigue and severe nauseaness. Alot of aches and pains Starting more chemo On 12/9/09. This time it will be Topotecan for 6 rounds. Told I will go bald and I am not upset at all by this news. Bring it on. Hormone Therapy Description, Dates & Side EffectsJust taking estrogen now for really bad menapause side effects. Doing much better now that I am taking the estrogen. I’ve now stopped the update because although no doctor will confirm this, I believe this is what is causing my cancer to keep coming back. Odd. I get the all clear, then when restarting estrogen, 10-12 weeks later I’m told the spot is back. So I am done with estrogen. Comments: |
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Oh Julie – I am sorry for calling you Michelle! It was you, Julie, I was thinking of . . . just blame my increasing years and general muddle-headedness – just stopped by your page again and saw that I had renamed you . . . sincere apologies – and I do hope you are healing and feeling stronger and that life is treating you kindly. with love, janet
Hi Michelle – you were on my mind so I thought I would stop by and say hello. Hope you are fully recovered now from the cyber-knife experience and that life is treating you well. with love and wishes for healing, janet
Hi Julie,
How are you? I had noticed that you hadn’t posted lately. I hope you and your kids are getting through this hot summer; I think the whole country is in a funk. Thanks for your statement on “good” cancers. Such comments make me nuts.
Do you have the results of the CT after Cyberknife?
Hugs and prayers,
Andrea
Thank you for the information Julie. I really didn’t have any hope because all the options they gave me other than bone metasases had been crossed off the list – knowing that other radiation cancer patients have experienced the SAME symptoms makes me feel 100% better – at least now I have hope that it’s not a big deal and in fact, maybe it’s even likely (given how many other have had the same experience) that it’s not in my bones.
I can’t imagine having the majority of my rectum removed and being immobile for so long. I really wish we lived a little closer, so that maybe I could help in some small way. You have helped me so much through this. You are truly a blessing.
thanks,
Robin
Hi again Julie – thinking of you and hoping all has gone well. love xx
Hi Julie – thinking of you today as you head into your appointments with the Cyberknife. My prayers are with you and I am sending extra beams of love and light to support you, your healing and recovery. janet
I am so glad you saw Michelle’s post about getting her colostomy this week. I know my surgery was so far in the opposite direction that I always worry about scaring someone:).
Is this chemo week for you? I will talk to you on FB! You are so close to being done and I am so proud of you for fighting your cancer and being a mother of two special children! Bless you and I hope you had a wonderful Mother’s Day! Like I have said before you INSPIRE me
!
Hugs,
Melinda
hello thank you for reading my post. i am trying to get medical but i am waiting for the state to approve me. but i am going try to get enough balls to go to a free clinic to get checked out cause i always feel so crappy
Thanks for the support Julie. Praying for you and your family!
Julie,
all bad things. I mean this thing is SILENT..I had no symptoms at all until an abnormal pap, I was told I had hpv and cancerous cells and I was sent on my way..it was scary (this was 2 years ago). So it scares me now, to think this silent hpv killer we know can infect somewhere else in my body, hopefully it has ‘cleared’ itself out by now! I go on monday and we will see. Wish you the best of luck, your in my prayers!! hope to chat soon!
thank you for commenting on my entry. Means a lot to have people who understand and can really relate. So I am sorry to hear how much youve been through and your going through chemo again :( cancer does suck, blah! So you were saying you know the hpv cancer types, were you diagnosed with hpv? I hear so much mixed things about it, like there is no treatment, it can clear itself, it causes lung cancer/esophagus, etc etc etc
Thanks for supporting me Julie. Good to know others will read or listen. Life is too short and we must not fight this alone.
Hi Julie! Thanks for your support. How do you handle “it” emotionally? Do prefer listeners or information providers?
David
Hi Julie,
Thank U so much to your response on my post re: my Unclear Pet Scan. You are so helpful to me. Wow…so, the FDG uptake #...thanks I will go and ask. Its re-assuring to me to hear that your docs dont even worry about the scans. Im starting to summize that my docs may bump heads. They havent said that yet but Im feeling the tension. Thats not good bcuz their feud affects me. I think they challenge each other and for that Im not getting the calls as quickly as I should be. Who Knows, now Im just babbling. Im not looking to worry or to blame. Im just bringing out a point that OUR blog is soooo much more helpful and quick responding than the ones we lay our lives on the line for…Wish I had the edumacation (LOL) to be a doctor…
Thanks for the shoulder!! I will STAY STRONG!! You do the same girl….
Love,
Elena :)
have radiation burn on the privates – but haven’t asked for the silvadine medicine yet. do you know anything that will help temporarily between now and monday?
noticed that you were expecting news yesterday (1/29) on when you do the cyberknife procedure. I was just checking in on you. You are such an inspiration.
Thank you so much for the advice. I have been trying to figure out how to schedule my office appointments and hearings and figured i wouild just take off wed for chemo and thursday to make sure i was clear. After your advice I think i will hold off on any obligations until day 5 after my treatment just in case.
You were conscious for this? that’s incredible!
3 days of internal radiation on your back – that’s awful
I have flushable baby wipes that i keep in both bathrooms of the house. Thanks for the advice. I’m gonna start using them immediately.
Originally no one gave me any meds to take at home. I have no meds of anny kind. So before I left, because of the things I have read on this site, I asked if I was going to get something for nausea at home. They called in phenegrin. I didn’t really get any instructions or advice on what to expece after chemo, but i do have one of the nurses cell phone number and she told me I could text her anytime if I had any problems.
This site, the people on it and the knowledge they have from going before me is invaluable to me.
I looked you up the same name but you did not show up but thanks! I left you a message! You have handsome boys!I think I had you miwed up with someone else! I am sorry about that! My brain has issues!
Julie,
That’s great news to hear about the cyberknife. Did you feel tired or nauseas after the treatment?
put in janet fehl I think.. Try jfehl@yahoo.com I am having brain issues…
When I went back for the results I did not expect to hear that! My cancer doctor said I needed to go back to Johns Hopkins and I said heck no! I was doing some research and I saw that NY had a 94 percent in cancer rating and Johns Hopkins had a 64 percent in cancer rating so I decided to go there. I am going to them since they are not that far from where I live and they are in good rating. I asked Kurt what are they going to do and he said just watch me. Here where I live I am just out of there leaugue Kurt said. So they put me on the steriods to get rid of the swelling but I can tell the swelling is still there. I can feel it still! I know I have always had tumor in my head that the doctor never removed from my speech area and across my butterfly area. But I have more tumor from where he had removed my other tumor. It is all crazy! You should see the MRI! I took this test on facebook that said I was going to die in a year! That is crazy!
thanks for the information. I noticed on there that cisplatin is usually the chemo drug for cervical cancer, and 5fu is normally the chemo used for breast cancer. I’m getting 5fu which is the breast cancer chemo drug. I’m not sure why. It seemed kind of odd to me. Unfortunately hair loss is a side effect of it, but I can life with that. I’ve been wearing scarfs around the house to get used to it and to get my kids used to it so it won’t be so difficult for me to leave the house the first time. I learn more tomorrow when i see the doc and get some of my test results back. They know it is invasive, I’m just crossing my fingers that it didn’t make it to my bladder and related urinary parts. I can accept the temporary hair loss much easier than a permanent bag for urinating.
Hope everything is going well for you. You seem so up beat and cheerful! Carpe diem ;)
I just discovered your blog and will continue to check in and share my support as best I can. I appreciate reading about your experiences and you help give me courage and hope. Frank
hi julie…you are to be commended …such strength and courage…I will be watching for your progress reports and hoping that 2010 will be a better year for you..!
d
Hi Julie thanks for your comments . still finding my way around site so left a reply to you on my profile . well i am irish .ha ha
Julie,
How long after your first cyberknife did you start chemo? Were you tired much after cyberknife? Thanks for help!
Julie,
Thanks for the info. Extra jolt of energy sounds good.
Dear Julie,
I’m new to the site and saw you up there in “my corner” and thought I’d stop by to say hello.
I can’t imagine going through this without my husband. I hope you have a strong support system besides this site (which is a Godsend)!
Blessings,
Theresa
Hi Julie, The pain was so unbearable and also the vomiting. The meds for vomiting weren’t working. I had the same pains last night at the same time as the night before. I am anxious to bring it up to my dr on Tuesday. I’m praying for you and wish you a calm and peaceful day.
Julie,
Thanks for your words of encouragement.
even though everyone I know tells me that I will be okay with this. I needed to hear from someone that lives with this. I am too busy having a “pity party” for myself I can’t even think straight right now.
Do you do the self irrigation? sorry to be so personal. But I think there is nothing personal left when it comes to cancer. The nurse said that I can be taught to train myself for it.
I truly am praying for a full recovery of every one.
Julie,
You have been through so much yet you remain strong and inspiring. You are a miracle! Your boys are so lucky to have you.I will keep you in my prayers daily.
Hi Julie,
Thank you so much for taking the time to make me feel better about whining! My chemo day is on Wednesdays, as well, and I will be thinking about you, about your port, and wishing you health with every bit of strength I have. Keep up the fight!
Jill
Julie,
Ashley loves the color of my hair now. She thinks I look just like her now. She is a beautiful little girl. She does have a little attitude once in a while but most of the time we main tame it by a star program…
Julie,
Thank you for the comment. I did very well on the second surgery the photo I have posted on my profile is new. I am trying to be a better person because over all I have been mean to my hubby but I am trying to be better. I do not wish to be this way at all I would rather just die but I love my daughter and I just do not know what to do with myself… Life is just not the same anymore and I really cannot take it anymore. I will not take depressant pills they only make me more crazy! So I just do not know what to say! The doctor yesterday at Johns Hopkins said this is normal. I kind of just did not know what to say!
Hi Julie,
I wish you the very best and thank you for looking at my info. If you wish to talk just drop me a email at kjafehl@yahoo.com
You might want to write Tara; I believe she had the knife and she could easily tell you how it works and how she felt about it. Good luck.
Weezie