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Vulvar cancer surgery (Vulvectomy) and doing very well.

Redsusieq
Posts: 1
Joined: Jan 2014

I am 49 years old and from Michigan.  I was recently diagnosed with vulvar cancer and am now 3 weeks out from surgery.  I am doing VERY well.  My cancer has not spread.  They removed the lesion (left side only) and did a lymph node biopsy and it was all clear.  I have no further treatment. 

I would be very willing to share my story with anyone, help with questions or just plain listen.  It was a scary process and I found little information.  I just want to be available if anyone would like to know what I experienced and am stil experiencing.

 

 

teg's picture
teg
Posts: 12
Joined: Apr 2013

I am four weeks post-op from my second surgery. My first surgery was partial vulvectomy (right side) and perineal biopsy/reconstruction March 2013. I had to go back in four weeks ago because they did not get clear margins the first time. The second procedure was mostly laser ablation. no lymph node biopsy was performed and my labs said VIN III.

I hope that will be the end of it for me. I will follow up with my doctor in four months. 

 

funbeadgirl
Posts: 157
Joined: Jan 2009

Well ladies, I havent been on the boards lately, mostly because I am still fighting this beast of a disease! I see some familiar names here, which unfortunately means you too are still fighting it. My hope is for you all to stand with courage and strength. I am amzed at how many different types of vulvar cancer there are and how rare they are. I am so sorry for all you have had to endure.

I just found out that my last PET scan showed three more mets, another in pelvic area, one in shoulder and one in cervical spine at C2, so my options are fewer now and I have come to a place of peace , living with the beast. If they could just manage it , maybe keep mets in check, I would be happy. I'll be happy in any case because cancer will not dictate to me how I will feel. It is SO hard to believe I am so sick when I feel great, no pain, I am walking 3 miles a day, I drive, shop, whatever I want, but my body is very sick, so I will continue to live my life the way I want until it changes.

My hope is that women do not have to feel embarassed or uncomfortable about this disease, I wish there was more information and more support groups specifically for vulvar cancer. There are issues very unique to this cancer and its treatments that I believe women need an outlet for...maybe someday.

Now I wait for call from oncologist about next line of chemo for me, he was running a special test on bone marrow to find the right chemo. Spring will come soon, and sunshine and warm breezes, something to look forward to!

Best wishes to you all, take care.

ccfighter
Posts: 380
Joined: Jan 2012

Funbeadgirl,

you are truly an inspiration for us all.  You have been a brave warrior throughout this all and have persevered through some really rough times.  You have an amazing outlook on life, and a graceful way with words.  Peace, love and light to you dear sister.

 

i know you will rally through this next set of hurdles the way that you have before, and come out the other side stronger, and tougher, and a survivor!  I'm sorry you are back in the ring, and I know that it is a tough blow after all you have been through.  But you are strong and will knock cancer back on its a$$.  

There is also the options for clinical trials.  Some are looking quite interesting and very promising.  I hope you find something that works for you.  Hugs and prayers. Let us know how things are going.  We are all here for you.

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Dear Funbeargirl

You have always been an inspiration to me when I felt so alone with this cancer. Yes you are right...there is nothing to be ashamed of and we need more money to be placed in this area to further treatment. I think we will see a lot more women with this cancer in the future. My poor husband and I have been unable to resume a healthy sex life after the radiation fried me down there. We are coping and dealing with hyperbaric oxygen treatments and doing well considering. This cancer impacts a woman in so may ways, physically and emotionally. You have a great attitude and just keep at it one day at a time. I love that you walk 3 miles per day. Me too...this is my therapy and I pray during this time. Yes one the posts says there are clinical trials so don't give up. We love seeing you on there. 

Best wishes always and keep up the great work.

Kathleen in Phoenix

Stage 11, squamous cell carcinoma of the vulva

Dx. in Mar 2012, tx with chemo and radiation.All clear so far!!!

funbeadgirl
Posts: 157
Joined: Jan 2009

Thank you cc and Kathleen, I am always so humbled by the expressions of encouragement here, we all know what it means to us to be understood, I appreciate every word.

i looked up the testing that is being done, it is called Caris test, it looks promising, I hope my doc was able to get insurance company to approve it. He also mentioned clinical trials so I imagine we will have that conversation next time.

yes, I will continue on, it is what I have learned to do and it serves me well as I keep busy with my normal life activities it is a sort of distraction from all the pokes and prods from the medical end of things and keeps me hopeful. Focusing more on my grand kids and  helping others less fortunate also keeps me grounded and not feeling sorry for myself.

i never thought it wasn't fair that I was dealt this hand...what would not be fair is if this was happening to one of my grand children, better me than one of them. It's all about perspective.

we bolster each other up with a few words of courage, cry with each other when we need to and feel the comfort and solace of others who understand the path we travel. May each of you who visit these boards be inspired by those who have travelled that path before you, knowing you can make it too.

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Dear Funbeadgirl

I am wondering how you are doing? I hope you are doing well and finished your treatment. Can you tell me, or can anyone, how do I feel better "down there"? It has been 2 years and my skin to the outside of my vagina remains red and sore. I had 50 hyperbaric treatments to heal a radiation necrosis ulcer, that healed. BUT I still hurt!! And sex hurts. I feel bad because at 49, I feel so good otherwise but my sex life with my poor husband...I feel robbed and sad. I feel too young for this.....anyways any good creams out there to apply to heal this? FUnbeadgirl, thinking of you.

Kathleen in Phoenix

Suffering through post treatment side effects.

 

funbeadgirl
Posts: 157
Joined: Jan 2009

Hi Kathleen,

sorry I did not answer your question about the creams for radiation. Hopefully your radiation oncologist gave you some creams. I was given several different creams at different stages of my radiation, first it was a moisturizing type cream, then I was given a cream with lidocaine in it for pain, then i was given a cream with antibiotic in it. That was when I had the 'wet burns'...not pleasant but manageable. One cream was called Skin Repair cream with Olivamine, manufacturer Medline, it was a moisturizer. I had a rare reaction to the chemo, I had what was called 'radiation recall', the chemo basically affected skin from previous radiation and the skin blistered and peeled like a bad sunburn. Funny thing was I never had that reaction when I first had radiation. Both times I had radiation, I used the creams twice as much as they recommended. I was fortunate that the skin in vulvar area healed very well.

did they tell you about scar tissue from radiation? I had to literally massage the areas radiated every day to break up the scar tissue, very painful but it was worth it, I have no pain in that area now. As far as sex...well personally i have had to come to terms that part of my life is over. For about one year after my first cancer surgery, we worked at it and as I said it was successful, but my mind was affected by the body image issues I had from the surgery, then I was diagnosed again with a metastes in my femur. Long story short...from august 2011 to june 2013 I had three major leg surgeries, plus more radiation and chemo and surgery to my pelvis. My hubby and I are very open about everything and came to understand that while we enjoyed that part of our life, it wasn't THE most important thing...we let it go and focused on getting me healthy and enjoying intimacy by just being together and having a wonderful family that supports us.

i have had only one clear PET scan since my diagnosis in 2008, I've had other metastes after every other scan. It is exhausting to face every scan result, then having to make decisions about more treatment, so now I just take one day at a time and pull out all the joy I can, in fact I've been blessed with two more grandchildren during this time...I have four reasons to continue to fight...Olivia, Jonas, Lucas and Ethan . We all have different needs and desires thus we all find our own reasons to continue in this fight. I hope for you that you heal well and continue to be strong and stand firm! P.s. We lived in Phoenix about 33 years ago, and I lived in Havasu for a short time before I was married, love the weather but missed my family too much!

Middy
Posts: 1
Joined: Apr 2014

I was diagnosed with squamous cell vulva carcinoma, my growth is 3 cm. I am still waiting for a surgery date. The surgeon stated he would excise approximate quarter size amount of tissue, with 3 to 4 sutures that will need to be removed a week after surgery. At the time of post op appt he will then review the pathology report regarding the margins surrounding the growth. I would really appreciate any feedback concerning the recovery afterwards.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 464
Joined: Mar 2013

Middy, I can't give you any advice, maybe some of the other ladies can.  I am sorry you have had to find us but welcome. 

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Hi Middy

If you would like to email me at katenraj@cox.net, I would love to help you. I am now 2 years post Stage2 Sq cell ca of left vulva. It has been a long challenging road but doing ok. Mostly having issues from the radiation. But the good news, this is a curable cancer and you can go on and live a happy life. But some things will change in your life...a new reality. Take it one day at a time and follow what the doctors have in mind. They do a really good job, but the side effects are for you to figure out what will work best. Email me and we can discuss more.

Best wishes and hang in there.

Kathleen 

funbeadgirl
Posts: 157
Joined: Jan 2009

Thank you Kathleen, I have meant to get here sooner. I saw oncologist and there is still no start date for the clinical trial he wants to get me into, still waiting for government approval. He is comfortable waiting a little bit since I have no symptoms and am feeling well. He said my best shot at controlling the metastes is the trial because it is targeted at the specific gene mutation that I have, a FGFR1 mutation, still a rare mutation. I'm okay with waiting a little bit for now but doc did say if it drags on to July, he will not wait longer,then he will get me started on another traditional chemo that addresses adenocarcinoma . Well see how it works out, I'm just busy with living my life for now and trying to recover from leg surgery effects from last year.

as a side note, the damage from radiation is different for everyone, I had radiation twice, first time to tumor bed in vulva and I recovered from that. Yes intimate issues are very difficult and doctors are not very good about knowing how to help a patient but if you have an understanding and patient partner, it can be dealt with. Sometimes intimacy takes on other forms and you have to become resolved to the changes. I think sex is a wonderful thing but it is not the end all in a marriage, you can have a meaningful relationship without sexual intercourse. With the surgeries I've had..13 different procedure in various places on my body, I've acquired an issue with body image, I guess when they keep hacking off and radiating your body it's hard to feel like a whole person so I have had to work on my own issues with this aspect. I am alive for the moment and enjoying the life I have and I'm satisfied with that. I just hope to get more days to do that, and I'm hoping this new trial will give me that.

so, now I just wait and take it one day at a time right now. My biggest complaint is the fatigue I have, it is always interfering with what I want to do, so I have to make adjustments there too. I'm learning but I won't give up!

thanks for checking in on me, I truly do sppreciate it very much!  Hope you are doing well and I hope you continue to heal...body and mind. Be strong!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 464
Joined: Mar 2013

You amaze me.  I read your profile and I am moved to tears by your thoughts and words.  Thank you for sharing yourself with us.

funbeadgirl
Posts: 157
Joined: Jan 2009

Not sure why this did not post but I just wanted to thank you for your kind words. My openness in sharing is really aimed at my desire to help other women to gain hope and strength through a difficult situation, if I have done that even once, my own sufferings will have been worth it. I will continue to do that for others and for myself too. We are not alone.

i hope you are well and as I always encourage others...to  be strong and stand firm.

funbeadgirl
Posts: 157
Joined: Jan 2009

ccfighter
Posts: 380
Joined: Jan 2012

I'm so glad you are feeling well.  I hope that the clinical trial starts soon for you and that it kicks your cancers butt.  You are so strong, and such a wonderful support and inspiration for others going through similar circumstance.  Keep us updated, we are all cheering you on.  Hugs.

lorisluck
Posts: 5
Joined: May 2014

Hi Everyone,

I'm 51 years old and a few weeks ago I started bleeding (post menopause).  My GP referred me to a gynocologist and he did a uterine biopsy.  While doing the biopsy the doctor saw discoloring on my vulva and told me he was not concerned about uterine cancer but was concerned about what he had found and that I needed another biopsy done.  I had the biopsy of my vulva done April 23 and was told results would be back no sooner than 7-10 business days so was shocked to receive a message from the dr. on April 29th saying biopsy results came back and are not good but are not the worst they could be and for me to call back.  I called back and spoke with the nurse who told me I'm being referred to an gyno oncologist and when I asked her if it was cancer she said yes, the beginning of cancer.  That's all I've been told at this point. 

I am having a terrible time finding information about this.  I looked up support groups and there are many in the UK, so thankfully today I found this one!

My oncologist appt is on Monday May 5th.  I'm very scared and am not sure what to expect.  Now I'm thinking that if they do surgery they could possibly find more problems (yes I have been googling a lot!).  

What happens at the first gyno oncologist appt? 

I feel like I am watching a movie of someone else's life, not mine.  Ever since I received the results I've felt so many different feelings and I have been doing the daily things that are expected of me but that's all, nothing more.  I just don't feel like it this week.....

I am also unemployed due to layoffs and am waiting here about a 6 month temporary position.  If I get the job I am not sure I can take it, it's a temp position and I can't just not be there if I need to have surgery.  Of course my health will come first, but need to survive somehow also.  I also raise my 8 year old grandson and it's just me and him.

Please help.  I have read some of the posts here and it sounds like things could possibly get even scarier.  

Thanks!

 

 

funbeadgirl
Posts: 157
Joined: Jan 2009

Thanks for the good thoughts! I'm still in a holding pattern, getting a little anxious about it but I'm trying to keep busy for now. I hope clinical trial comes through for me, if I have the traditional chemo and it doesn't work, I may not qualify to get in on the trial afterwards, I guess I will have to think about that.

This morning I noticed another lump in my vulva area, opposite side of original tumor...I'm thinking I'm over reacting in my head, but it is clearly a lump and it looks like a broken blood blister, now what do I do? I know I should call gyn oncologist, but I've been turned over to a new doc, my old doc moved away, and I just am so resistant to getting new doc up to speed on my situation. I think he will say let's biopsy that, and I don't know if I can wrap my head around that right now. Of course then the other part of me says,  'remember the last time you had a lump like this...and you waited a year to see doc'? I know the right answer.

my dear Lori, I'm sorry for what you are going through, perhaps there is a social worker at your hospital or doctors office that can direct you to special programs to help with your situation? Maybe you will qualify for disability? Sounds like you may not be in the U.S., so not sure how that works where you live. All I know for sure is that a patient must speak up, let nurses know and the docs what your concerns are. I have found the nurses to be a little more 'in the know' about these type of things though. Take it one day at a time and don't be afraid to ask for help. I wish you the best, hope things fall into place for you.

sometimes I get so mad, I feel so hopeless and feel so defeated but in the end I feel so blessed to have the support I have and to have such great doctors and nurses on my team, and yes I have a great quality of life that I enjoy. I try to remember in those times of sadness and despair that it is just a bad day I'm having and it will pass, I like the quote " having a bad day doesn't mean you have a bad life"-not sure who said that, but it is so true, I must keep it in proper perspective. I have a very serious situation but I'm not dying today, probably not tomorrow, and it's not on schedule for the day after that either, so I will not borrow anxiety and worry from the future...it is the present that is my gift( sorry for the pun) and that is where my joy is!

may you all have happy and blessed days also and be strong and stand firm against your struggles...with a smile.

 

funbeadgirl
Posts: 157
Joined: Jan 2009

Here I am again...still no news! I saw oncologist, he still has no start date for the clinical trial and he admitted that he did not know how to read the genetic report very well, so now he says I do not have the mutation they thought I had, but that I have a cell that is defective and replicating it self like crazy...yeah...that's what cancer is right? Anyway since I'm not in pain from the tumors hes not particularly worried about that, but is worried about my kidney function, my numbers are all either too high or too low. So now I have to have a CAT scan next week for him to check out the progression of tumors and look at the kidneys. All I can say is that it is getting harder and harder to put on a happy face and fight this disease in a positive way.

I continue to have pain in right leg where Ive had three surgeries from the metastes in femur, I'm on oxycontin and vicodin and it hardly makes a difference. I'm tired of complaining to my doctors, I'm tired of having to tell my family and friends that I have no news on my next treatment plan and I'm tired of always thinking that every little ache and pain is related to more metastes...I'm just tired.

Every day gives me a new opportunity to face the day positively and with hope, so I guess I will take it day by day, no sense to borrow trouble that might not come my way. Focus...that's what I need to do, focus on the positive and constant things I do have in my life, and there are many, I'm blessed and grateful for every day I wake up...but would I be human if nothing ever bothered me? I think not.

I think I just needed a little time to spout off tonight, thank you, I know it's safe here. I really am okay, generally speaking. I just want to 'move past' this but I can't seem to do that, it's like someone is moving the finish line farther away as I approach it each time. I really need a different mind set, I'll never move past it, it's here in my life forever.

 

p.s. at least my last little lump was nothing, it went away....I wish the rest of the cancer would go away too!

ccfighter
Posts: 380
Joined: Jan 2012

Human, yes, and a wonderful one at that.  This is a long hard battle you've been fighting, with such grace and bravery.  It is so hard not to have a plan of attack when you are on the front line every day, looking for a commander to give orders, dodging bullets, nursing injuries, wondering if this war will ever end.  You are an amazing woman.   I hope that soon you will have a treatment plan And that it knocks this disease out.

 

also, the link you provided about the cervical cancer treatment at NIH, with T cells, well, they have done the same type of treatment with some other cancers and perhaps have some clinical trials available for other solid tumor types.  Maybe you could look into that.

 

peace and comfort my friend.

funbeadgirl
Posts: 157
Joined: Jan 2009

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.

ccfighter
Posts: 380
Joined: Jan 2012

May kindness, love and warmth find you always.  

funbeadgirl
Posts: 157
Joined: Jan 2009

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.

 

ccfighter
Posts: 380
Joined: Jan 2012

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
Posts: 157
Joined: Jan 2009

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!

ccfighter
Posts: 380
Joined: Jan 2012

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
Posts: 157
Joined: Jan 2009

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

 

ccfighter
Posts: 380
Joined: Jan 2012

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's picture
NoTimeForCancer
Posts: 464
Joined: Mar 2013

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!

babe12
Posts: 53
Joined: Jul 2012

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

katenraj's picture
katenraj
Posts: 13
Joined: Aug 2012

Dear ladies

I just caught up in my discussion board. I wish I could be notified when you post here. I forget to check the board and am sorry to hear you are not feeling well Sue and CC. You are wonderful amazing strong women. I am praying for you. I just celebrated my 50th Birthday with my family flying in from Canada to surprise me. My wonderful husband organized it all. I am so greatful for each birthday. 2 years post and 3 more to go till I am totally free of this horrible cancer. I know what you mean Babe12 about being unable to talk about where your cancer is. There is more acceptance of breast cancer I think, We will hold our head up high and be an example of other women and educate wowen on the importance of getting checked if they feel a lump. educating women on HPV testing etc...my boys are now 13 and 14 and I love each and everyday I have with them. Blessings to all you brave ladies and dont ever hesitate to contact me if you need to talk. MY email is katenraj@cox.net  ( I forget to check this board and dont always keep up to date with it) 

Sincerely

Kathleen in Phoenix

funbeadgirl
Posts: 157
Joined: Jan 2009

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.

babe12
Posts: 53
Joined: Jul 2012

Funbeadgirl, you have such a positive outlook!! Thank you for reminding us to look at the good things in our lives. Even when things get bad at times, it could be alot worse. I'm sorry you don't get into the clinical trial, that really sucks. I'm sending up prayers & positive thoughts that your pet scan will be good & for your oncologist to find the right chemo for you. 

I have finally gotten use to saying vaginal cancer, even though some people may feel uncomfortable hearing it, they can just get over it.

You are such a strength & inspiration. You have held tight to what's important in life, which is wonderful reminder for everyone! You hang tough girl & keep us posted on how you're doing.

prayers, hugs & good thoughts,

Babe

ccfighter
Posts: 380
Joined: Jan 2012

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
Posts: 157
Joined: Jan 2009

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.

ccfighter
Posts: 380
Joined: Jan 2012

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
Posts: 157
Joined: Jan 2009

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!

ccfighter
Posts: 380
Joined: Jan 2012

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's picture
Jenn Jenn
Posts: 5
Joined: Aug 2014

 

 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.

 

mmcia
Posts: 10
Joined: Feb 2013

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.

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