Vulvar cancer surgery (Vulvectomy) and doing very well.

funbeadgirl said:

Thank you for your wonderful

Thank you for your wonderful words of confidence in me, I'm always so encouraged by your always reaching out to lift me up., that is what I love about this site, we all can rant and rave and expound however we feel and there's always someone there to understand. I know I will get through this, one way or the other, I'm just trying now to put everything in it's proper place and not give over too much control to the disease, it is still my life after all! I really need to start journaling again, it always helped me to get it out of my head and organize my thoughts.

today I saw my primary doc for a regular check up and she was very concerned about my kidney function but also that my calcium was twice as high as should be, so I had to call endocrinologist to sort that out. Now my calcium meds are cut in half and I pray that the calcium doesn't get too low and the seizures start again, honestly there is never a dull moment in my life. More blood tests now too.

im changing gears here, rather than talk about the trials and things that bring me down, I'm going to talk about the things in my life that bring me joy, the things that are really the most important things. I have 4 beautiful grand kids, Olivia-15,Jonas-13, Lucas-3 and Ethan-7 months, they are the four reasons that I endured chemo every three weeks for 5 months, the reason I save my strength to play with them and the smile on my face when I just think of them and how close we are. We live in same small town with my son and his wife and the kids, we have dinner together every Monday night and have been doing it for15 years! My daughter in law called me one day and asked us to move closer to them..oh yeah, she likes me that much, of course we moved...and we only lived 10 miles away at the time.Her parents live in town here too as well as her sister, we all love each other and get long very well...that is a true blessing.

i have a wonderful supportive husband that sat with me every minute of a 6 1/2 hour chemo infusion, six times plus accompanied me to countless doctor appoitments, scans, tests, biopsies, so many things. He's a hard worker and has had to take on extra hours when I couldn't work anymore, he does ALL the cooking and will do anything I ask him, he even anticipates my needs before I do. He supports every choice I make and makes it easy for me to make those choices, he also has been so understanding in the aspects of how this disease has affected me, emotionally, mentally and physically. I honestly believe that this has been harder on him than it has on me,I really do.

im grateful for my mom, she is my biggest cheerleader,I can only imagine how hard it must be for her to watch me, her firstborn,have to face this ordeal and live with the thought it might possibly take myl life, no parent should ever have to endure that. My sister has been a constant support,always ready to take me to the store, run errands, go to lunch, just listen to me vent, we have gotten much closer,a positive thing to have come out of this.

countless other friends that took me to every single day of radiation treatments, two separate times for a total of 58 treatments, and the drive was 60 miles round trip. I've had cards sent to me, fruit baskets, lots of chocolate, meals, visits, my favorite coffee drink from Starbucks, an afghan made for me, numerous caps for chemo, a paid trip to Disney that my friends organized, a surprise party when I finished chemo, and then while on that vacation for 6 days...they came in my house and remodeled my 30 year old kitchen!

how can you ever say a thank you that covers all that? I guess it's in living the life I have that honors the love they showed me, to embrace every moment of every day, to see the good in everything, even the bad days. I don't ever feel sorry for myself, I realize that I have a blessed life and I have much more than another person might have so I must use what I have, what I have learned to pay it forward so to speak,mi hope in some small way I have been able to do that, and I will continue to look for opportunities to do so.

at the very foundation of all of this, at the very core of my being is the recognition that I am not any more special or more blessed than another person, I just try to accept what I have is a gift. I have a strong faith in god that gives me a sure hope of better times ahead, it's not in my hands but in gods hands and I've learned to be patient and wait , while trying to use my life to bring glory to god. I don't blame him or think he's trying to teach me a lesson, this disease happens across the board to babies and children, to good people and less than good people, but I will allow myself to learn about myself and others in the face of it. With that said, I think I have seen the very best of humanity in this situation, I'm humbled to have been the recipient of that kindness.

i have no special words of wisdom, just true feelings and the expression of such. Blessings to you all.

May kindness, love and warmth find you always.  

funbeadgirl said:

New scan results

Well, I have more mets to pelvic/pubic bones, right hip, two ribs and some exsisting tumors have increased in size since February. Clinical trial is still not ready, so I'm still in a holding pattern. However, I remain hopeful and continue to enjoy the life around me.

 

I really hope they get this trial going for you soon.  I'm glad you remain positive and hopeful.  I'm sorry your scan shows progression. Is there nothing they can do to control this disease in the meantime?  Hugs to you.

funbeadgirl said:

Hi CC, since I've already had

Hi CC, since I've already had aggressive surgery, radiation and chemo they are at a loss as far as the next step. While having chemo last time, I had a tumor forming so apparently chemo was ineffective. I'm also stage 4 with numerous metastes, so a clinical trial would be best and the trial they want to get me in, focuses on the particular genetic aspect of my cancer, it is my best bet.

the tumor mets are small and I'm not in any pain so I think that is why they are comfortable waiting it out a bit but I'm getting scared now, I don't focus on it but I know what the outcome will be for me eventually as these tumors grow, especially the one in my cervical spine but I'm not there yet so I enjoy a good quality of life, live for the moment is my focus.

im really okay for now, we will have a talk about how to proceed later, if trial is taking too long. I won't go past where I'm at, in other words I deal with today and not let tomorrow rob me of today's joy, I have a great life, I am blessed.

I participated in a 3k walk this past weekend with the Lombardi cancer foundation, 40 of my friends showed up to do it with me, I was so encouraged by the outpouring of love from that, that now I am just soaring with hope to keep going despite any scan result that is less than positive. There are blessings around the corner, we just have to recognize them and focus our attention there. The future will take care of itself.

hugs back to you! Thank you!

I'm glad you are comfortable.  Your positive outlook will carry you far.  I hope the trial becomes available to you soon.  Which chemos have you tried?  Did the tumor profiling discover any other treatments of benefit to you?  I was looking for a trial for you that has been all over the news recently, the autologous T cell transplant, where they remove a tumor, collect the white blood cells that are attacking it, grow many more of them, then infuse them back into you.  They have several trials but I couldnt find one for vulva or even solid tumors but they may be available.  NIH would know more.  It has put several people in remission with different cancer types including cervical and liver.  Perhaps worth an inquiry?

stay beautiful and blessed funbeadgirl.  I will continue to send positive energy to encompass you.  Hugs.

funbeadgirl said:

You have no idea what your

You have no idea what your words mean to me right at this moment! I have been having a very rough time this past couple weeks, I just feel I am being put off by the fact that whatever trial my doc is referring to is just taking so long to be approved. I'm not even sure what the trial entails but I will get more info next week when I see my doc. disease has progressed, new tumors and increased growth in others, very scary especially since I am not in active treatment. We will definitely be having a forthright conversation about this.

i am having issues with my leg again, I've been in for cortisone shots and two weeks ago I had an injection in my SI joint, which did help, but the pain and muscle issues just travel to the next weakened area, so I continue in physical therapy. It is helping but living with constant unrelenting pain is wearing me down and I'm not liking the fact that I have to take pain meds on a regular basis. My biggest fear is that the leg is still a non union fracture, which will probably mean another surgery and bone graft...not sure I'm up to that again, for the fourth time! How can my body heal when it is fighting constant bone metastes?

last time they gave me taxol and carboplatin, very aggressive and usually the go to cocktail for an adenocarcinoma, I'm not sure what he will recommend for the next round if I can't get into a trial. My doc did say something about a particular cell production that I have that would qualify me for this trial, honestly I need to get more info from him and write it down. I've been too trusting so far.  I feel pretty good right now but I am very concerned that nothing is being done and I've had progression of disease since scan in February, I think it's time to push the envelope with him. I'm tired of taking the time and paying for office visits every four weeks just to have him tell me that he hadn't heard anything yet, and the anxiety of waiting plus I have high hopes that next time I get news of the trial. I think I must be more proactive about this.

i find it so incredibly kind of you to do some research on my behalf, you are a kind person and I appreciate it so much. I truly feel the positive energy from my CSN friends, my family and friends, it is of great comfort to me. It is that spirit that I cling to for the courage to keep fighting and forging ahead through all of this.

thank you for your wonderful words of encouragement, I carry them close to my heart always. Sue

 

Sue,

I hope that are feeling well.  I hate to think that you are experiencing pain, either from the mets or from the treatment effects.  Did you have the caris test done on your tumor?  Is this how they are trying to move forward with targeted therapy?

my friend passed away this week from prostate cancer.  He was 58.  We spoke occasionally on the phone, commiserating over cancer treatments, changing perspectives, helping each other stay positive and researching treatment options.  I am sad he lost his battle.  I am glad he is free now from this disease.  He had multiple bone mets and had had radiation to his spine and his leg.  He found himself in a lot of pain despite it.  I remember him telling me of a treatment that he was going to try, though never was strong enough to actually get it.  It was radionuclide thrapy, where the give you an IV of radioactive substance that bone absorb, sparing most normal tissue.  It is absorbed into the bone in order to specifically target bone mets.  Thought I'd pass the info along.  It may be of benefit to you.  (Also, he said smoking marijuana helped alleviate his pain and keep him funcationing better than any of the pdescription pain relief drugs.

http://www.ncbi.nlm.nih.gov/pubmed/22740795

there is also a drug for bone mets.  Exgeva.  http://www.xgeva.com

i also found a clinical trial similar to what I posted before. 

http://clinicaltrials.gov/ct2/show/NCT01081808?term=Autologous+T+cell&rank=52

im not sure where you are located, but NIH is worth a call to discuss options.  Most of the time, clinical trial nurses are willing to talk and research to help find something suitable.  If you find yourself so inclined.

I have been sick this week.  I think I have the flu, but I don't really know who gets the flu in July.  I've spent the whole week in bed with fever and cough and sore throat.  Managed to throw some food together and host a 4th of July cookout, but it seemed with my eyes half closed.  I have a scan coming up in a few weeks and am quite nervous.  I am so tired and that scares me.  

i hope that things are going well for you.  Know that I am always thinking of you, sending positive energy to you, praying for us all and an end to this disease.  Hugs.  Kept up the good fight.  

NoTimeForCancer said:

ccfighter, you are so

ccfighter, you are so kind! 

As far as yourself, take a breath.  I don't think anyone can imagine how anxious cancer survivors get when it is time for blood draws, scans, etc....I know I asked on the uterine board once and was assured it gets easier.

Hope you feel better and HUGS to you!

Each one of you brave women are so strong & such an inspiration to us all. Cancer is a hard diagnosis to be given. Doesn't help when it's cancer of your private parts. It took me a long time to say I had vaginal cancer. Keep fighting & remember, there are alot of us cheering for each of you to defeat this nasty b@st@rd!!! Prayers, good thoughts, vibes & hugs to each of you!!!!

babe

I too forget to check the boards, I get so involved in what I'm doing that I forget.  yes, we must hold our heads high and not be ashamed that cancer decides to attack us in our vaginas or vulva area...as I always say, 'it's just parts', that's how I dealt with the radiation mapping and planning to my entire pelvic area..frog leg position...yeah, forget having inhibitions!

i think of you ladies too, I pray for you all to have some reprieve from the disease and treatments and scans, I don't think the anxiety ever goes away. I have PET scan coming up on Tuesday, and the following week I start chemo again. Unfortunately I did not qualify for the clinical trial because I've had a second cancer diagnosis, thyroid cancer and I have issues with calcium absorption so I can't take the bone building medicines either...I'm between a rock and a hard place right now. So the next chemo is a shot in the dark, as my oncologist put it, we hope to just control the metastes and keep me symptom free, I would be so happy with that!

I'm disappointed that I can't be accepted in trial, I feel we have wasted so much time waiting for the trial and now I can't do it...all the while, new cancer cells are growing, makes me mad. Yet, I still have a pretty good quality of life, I have it much better than many others and I don't live in a war zone, I have food, shelter and a support group, what else could I ask for?! It's about perspective, and appreciation and having faith and hope, all things I strive to hold onto.

I might lose my hair, my strength maybe even my life, but cancer will never take away my spirit of joy for the life I have now, I won't allow that...for now I will take it one day at a time, do my best and forget the rest.

funbeadgirl said:

Hello everyone

I too forget to check the boards, I get so involved in what I'm doing that I forget.  yes, we must hold our heads high and not be ashamed that cancer decides to attack us in our vaginas or vulva area...as I always say, 'it's just parts', that's how I dealt with the radiation mapping and planning to my entire pelvic area..frog leg position...yeah, forget having inhibitions!

i think of you ladies too, I pray for you all to have some reprieve from the disease and treatments and scans, I don't think the anxiety ever goes away. I have PET scan coming up on Tuesday, and the following week I start chemo again. Unfortunately I did not qualify for the clinical trial because I've had a second cancer diagnosis, thyroid cancer and I have issues with calcium absorption so I can't take the bone building medicines either...I'm between a rock and a hard place right now. So the next chemo is a shot in the dark, as my oncologist put it, we hope to just control the metastes and keep me symptom free, I would be so happy with that!

I'm disappointed that I can't be accepted in trial, I feel we have wasted so much time waiting for the trial and now I can't do it...all the while, new cancer cells are growing, makes me mad. Yet, I still have a pretty good quality of life, I have it much better than many others and I don't live in a war zone, I have food, shelter and a support group, what else could I ask for?! It's about perspective, and appreciation and having faith and hope, all things I strive to hold onto.

I might lose my hair, my strength maybe even my life, but cancer will never take away my spirit of joy for the life I have now, I won't allow that...for now I will take it one day at a time, do my best and forget the rest.

I pray you always keep your fighting spirit and love of life.

i am sorry that you won't be able to take part in the clinical trial you were hoping for.  I am sure that is disappointing but I do believe that the right chemo combo WILL keep you symptom free and control your disease.  What chemo are you going to start on?

how did they discover this second primary of thyroid cancer?  Does this interfere with your calcium absorption?  Or is it the bone mets That interfere with calcium absorption? 

I hope everything continues to go smoothly for you.  You are such an inspiration to us all.

hugs and healing energy.

funbeadgirl said:

It will all be fine

Thanks Babe and CC for the encouraging words! I try to maintain a good attitude but I do have my days...

my thyroid cancer was found on a PET scan after my first vulvar cancer treatment, I had scan 3 months after I completed radiation, which is normal and that's when it was found. That was back in 2009 and I've had only one clean scan in all that time. It was not related to vulvar cancer at all. In the process of that surgery, one parathyroid gland was removed and that is what has been causing my calcium issues. I went to emergency room 3 times with seizures before they figured it out, one time I was hospitalized for 5 days, hooked up to I.V. For calcium, potassium, magnesium. Because of that I can't take the bone building drug, which is a bummer.

doc said this time it would be carboplatin and gemzar. Right now I have a really bad chest cold and it's in sinuses, so I'm not sure I will be able to have the scan, I'll have to call clinic tomorrow morning.

my plan is to do the chemo, get plenty of rest, eat good quality food and just enjoy the good days, it will all be fine.

I'm sorry you are dealing with a cold on top of everything else.  That's just not fair!  I also had the cold, or whatever virus has been going around.  Started with a sore throat, then a terrible phlegm producing cough that hurt, it hurt to breath, and my sinuses were so congested.  I also had a fever for a few days with it.  Started July 1st and I was pretty much down and out for a week before things started to improve.  I still have a lingering cough though.  Get plenty of rest and fluids.  Try to keep your strength up best you can.  This too shall pass.

i did the carbo gemzar.  Gemzar was a pretty easy chemo for me, all things considered.  Fatigue my biggest complaint with it, but no bone pain, nausea, ect like I had with taxol.  The carbo of course is a little rougher with the blah feeling and taste changes.  Gemzar also caused my liver enzymes to elevate, but they returned to normal after treatment.  Hopefully you will find it as tolerable as I did.  I know chemo is no fun but I pray that it keeps your disease contained for a long long time.

i hope that you able to get your scan but the worry of course would be the false positives from inflamation caused by the virus.  I hope the results are better than you imagine and that the beast will be tamed.

hugs to you.  Hang in there and keep us updated.

funbeadgirl said:

Wait...what?

I had to push off the PET scan until following Monday, same day I saw doctor for chemo planning, they did scan in morning and I went back in afternoon to see doc, it all worked out. Scan did not show any more mets, just the ones they knew about from two months earlier, and those seemed stable, although one in neck did increase in size a little. So the plan was to start that Thursday with first treatment. I came back Thursday , all ready in heart and mind to do chemo and I was sent home because they did not have authorization from insurance....yeah, you can only imagine what my reaction was. I promptly went home and called my insurance company and insisted it be handled immediately...yes, they dropped the ball, my file was sitting there, amongst the others waiting for approval. The gal responsible was gone for a day and had not caught up to get mine approved! Grrrr long story short...I was back at doc and getting treated within the hour, my doc was impressed that I called insurance company. I told him that I am not intimidated by anyone or anything when it comes to my healthcare, certainly not an insurance company...they work for me!

so I had carbo with the gemzar, no reaction and did well, a little nauseous but manageable. So this past Thursday I went back for just the gemzar and could not do it because blood counts and platelets were too low..bummer! So home again with no treatment, and hope this week I can have it. As a result of now being neutropenic, I have to stay away from crowds and my grandkids, another bummer. My schedule will be carb with gemzar one week, next week only gemzar,then a week off, then start over. I hope this doesn't happen again but I imagine it will. I think doc will give me neupogen next week if counts don't come up, not sure why he didn't this week, probably because of the platelets and I think he wanted my body to fix itself, especially this first time. He is very conscientious with anything regarding blood counts.

so now that I have a few days to myself, I am getting some things done around my house and just enjoying the beautiful weather and feeling good for now, that's what I'm content with. Hope all here on the boards are doing okay and keep putting one foot in front of the other, that's all we can do sometimes. Stand firm ladies!

I too couldn't get the second week of gemzar on the first go around.  My counts tanked also.  I think it's largely the carbo though the gemzar will take down the Platlets.  I tried to switch to cisplatin to avoid the blood count issue but became allergic.  I am glad you handled the treatment well and are going ok.  Yeah for the stable scan! 

Keep ep putting one foot in front of the other.  All the way to the finish line.  Hugs.

Jenn Jenn said:

VIN lll

 

 Sorry that we have to meet under these circumstances However iam from Canada And Was just diagnosed last Monday with stage 3 VIN, I go Tue Aug 26th to the Cancer Clinic to find out Surgery options Dates Honestly I dont know much other then i was diagnosed with this Ive researched and read so much online and find alot contradicts each other so im not further ahead then i was a week ago.I would love to hear your story and how you've been doing.

The world is full of pain but HOPE will always keep you going.

 

Two years ago I had my Bartholian gland removed, it turned out to have a Squamous Cell Carcinoma tumors. The lymph node removal showed that cancer had invaded those too and a MRI showed loose cells where the originl tumor had been removed. I had four rounds of chemo, two through a PIC line and 31 sessions of radiation. Secound degree burns set in at day 20 and 3rd degree burns on day 25.I went neutropenic at the same time so I ended up having four bad days. A year and a half later my lungs and bowels still fill up with phlem from the chemo and I still have scar tissue in my vagina and my bowels, which causes diarheaa. I decided when I was told that I had cancer that the best way to deal with this was to remove my emotions from the mix. It helps, I deal with symptoms by altering my diet ( no dairy products, take pro-biotics and control level of spiciness), jumped back into sex a couple of weeks after last radiation session and never altered my schedule because I want my life to be normal. I am blessed to be have been able to retire several years ago so that the demands on my time are fewer and I only have to do what I want to. I do a lot of volunteer work and try to give back because I'm grateful that I came through this. I don't kno what sorts of contradictions you're referring to but, yes, there's a lot of different experiences out there.If you have any questions, please ask.