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Recurrent cervical cancer

ccfighter
Posts: 359
Joined: Jan 2012

So...1 year post hysterectomy for 2A adenosquamous carcinoma of the cervix with pelvic lymp mets, 6 months post treatment with chemo, chemo/radiation and more chemo, and a ct scan revealed a new 1.7 cm soft tissue mass is the anterior pelvis. Pet/ct coming soon. I'm so sad.

kimmiehedg
Posts: 27
Joined: Nov 2012

i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

my son watches that show..............i will have to ask him about it. 

i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

Keep me posted.........................

 

kimmiehedg
Posts: 27
Joined: Nov 2012

i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

my son watches that show..............i will have to ask him about it. 

i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

Keep me posted.........................

 

kimmiehedg
Posts: 27
Joined: Nov 2012

i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

my son watches that show..............i will have to ask him about it. 

i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

Keep me posted.........................

 

ccfighter
Posts: 359
Joined: Jan 2012

What kind of sick have you been feeling?

Did the surgery ease any of your pain or symptoms?

A second opinion is a good idea.  I think everyone should get a second opinion if for nothing else then for more information.  My oncologist recommend me getting a third opinion.

Glad to know the eggplant water isn't terrible.  I'll have to give that a try.  Hang in there.  We will get through this together.

ccfighter
Posts: 359
Joined: Jan 2012

Going to start carbo/gemzar in February.  Hopefully kill all the rest of these wandering cells.  Will do a little radiation to the abdomen also.  Hopefully this will be the right combo to kick this cancer's butt out here.  Till then, I'm off to Disney world!  So excited!!

 

Anyone done carbo/gemzar?  How is this combo?

kimmiehedg
Posts: 27
Joined: Nov 2012

HOORY FOR YOU!!!!!!!!!!!  I am so excited for you and your family.  When are planning to ho to Disney?  I'veer never been but my sister said its fabulous!!!!  Hw many treatments of each?

ccfighter
Posts: 359
Joined: Jan 2012

I will do six cycles of the carbo/gamzar.  The cycles are a little different than the carbo/taxol in that the infusions are shorter (yeah!) and the cycle goes day 1 carbo and gemzar and day 8 and repeats every 21days.  the nurses tell me the first infusion of gemzar produces flu like symptoms with body aches and fever but that the rest of the infusions are a lot easier.  The biggest side effect of this combo seems to be blood count drops.  Not happy I will be needing the neupogen.

We are planning to leave for Disney on feb. 1.  Can't wait!!

funbeadgirl
Posts: 150
Joined: Jan 2009

CCfighter, I have been reviewing your posts and I find you to be very encouraging with all that you have gone through. I have idenified with so much of what you have said and I was very interested to hear about your pelvic recurrence. I am glad they could do a vertical incision with out doing a complete pelvic resection. I truly wish for you to get through your treatments and be able to gain strength and move on with living life. What I have come to realize is that none of us has any guarantees, that is why it is important to just live every day as the most precious day of our exsistence.

For the past 4 months I have been dealing with a similar situation as yours, I have metastaic vulvar adenocarcinoma. I finishes carbo/taxol last March (2012) and in Oct. PET showed area of uptake in the anterior pubic bone. I was told it was inoperable, so I went to Mayo clinic for a second opinion, and they thought they could do a pelvic resection but needed my previous IMRT files to see where areas of radiation were to see if I was a candidate for the IORT, well I was not, too much radiation to same area before, so Mayo said no to the surgery.

Two weeks ago I had cyroablation procedure to the pubic bone, much less invasive than the surgery, but it has knocked me on my butt! I am still recovering from a surgery to my right femur from last May, I had to have a rod inserted because I fractured my leg..probably due to the radiation and chemo I had after the leg surgery in Aug. 2011.

My life has just been one doctor visit after another, constant CT. MRI, Pet, all that goes with a cancer diagnosis. My percentages are very bad also, 80% of the women with my cancer type usually die, and I have have 2 metastes within a year. I try not to focus on that, just on getting past my current health issues and trying to move on to doing what I want. Honestly it has been very hard to do that lately, I feel depressed and useless, I can't work, I can barely walk still, and I wait for the next scan, hoping it doesn't show any more mets.

I went to Disney in November..it was planned last January as a victory trip after I finished all my treatments, but I received the news of the new tumor just before I left, so the trip was ever so more important to me, I knew it might be a while before I get back to the Magic Kingdom. We usually go every year, but haven't in last 4 years since my first diagnosis, but I plan on going again!

I guess this forum has been so helpful to me because I can read what other ladies are going through and see how others are able to deal with their own situation, and it gives me strength to continue. Thank you for sharing your experience here, I hope the best for you.

ccfighter
Posts: 359
Joined: Jan 2012

Funbeadgirl,

I have been following you as well.  I hope that the ablation to your pelvic bone was successful.  How was that treatment?  What is involved and how is the recovery?

My recent surgery to the pelvic met was on wall anterior abdominal wall in the pelvis.  It was pretty straight forward because it was superficial.  The problem was that the tumor had adhered to my small intestine, so they had to remove part of the small intestine along with the tumor on the abdominal wall.  I have googled my brain out about mets to the abdominal wall from cervical cancer and it appears that it is very rare.  I can find little information about it.  It is very frustrating.  And though cervical cancer is not so rare, most are squamous.  20% are adenocarcinoma and I have a mixed adenosquamous and comprise about 5% of cervical cancers.  There is not much known about my cancer, and that too is frustrating.  I had a lung resection done at the same time as my abdominal surgery and that one hurt!  now I will go back on chemo even though it appears to be rather useless for cervical cancer.  Still hoping.

I know how hard it is to stay positive when things keep going wrong and you feel like crap.  This website has been so helpful to me too.  It is less scary when you can share other people's experience going through the samethings.  I hope that you feel better soon,and that the ablation got the last of those cancer cells.  Hugs.

funbeadgirl
Posts: 150
Joined: Jan 2009

Thank you so much for your words of encouragement! Sounds like it was quite a surgery you just had, and I hope you heal well for your trip to Disney.

The ablation was not too bad, I did request to be put under general anesthesia though, it was a 2 hour procedure. My tumor was in the front of the pubic bone, it engulfed the entire left pubic bone. A pelvic surgery would require basically cutting me open across my abdomen, down the groin and across top of lef leg in order to expose all abdominal muscles so they could be detached from the pubic bone, Then they wanted to remove the pubic bone and re attached the muscles to other muscles...a very big surgery and not guaranteed a good outcome, certainly not a 'cure' for my cancer. As I stated I still am dealing with healing issues in my right leg from surgery last May.

With the ablation, they insert 6 probes through the skin, like a needle (so no incisions) into the pubic bone. This is done using a CT machine for guidance, then they use liquid nitrogen to slowly freeze the tumor, thereby killing the cells. Pretty straight forward and not invasive, but I was bruised and swollen in the groin and abdonimal area, both sides for a week. Tuesday it will be 2 weeks since I had it done, and it is still tender in the pubic area, but I expect in a couple weeks that will be gone. I feel pretty good but I am very fatigued and honestly a little depressed, but I know it will get better. I still go for physical therapy for my right leg, 2 times a week, so that takes a lot out of me too and I am not progressing like I should. The problem is that the femur has not healed and made new bone, doc thinks it is because of the radiation and chemo I had, and the fact that a new tumor was growing all at the same time.

I totally understand what you say about trying to Goggle anything regarding your cancer, it is frustrating. My vulvar adeno is also a very rare cancer, and none of my docs had ever seen it or heard of it metastasizing to a bone, much less 2 different areas. I no longer hope for a cure, I consider it a disease like diabetes, it is incurable but treatable, Probably the hardest thing for me is the waiting in between the scans..you always hold your breathe, hoping they will find nothing.

My evergy level and interest in doing things is very low right now, I really have to find a way to get out of this funk I am in, it is counterproductive to getting well and I know it serves me better to be active, even if it is limited. This week I will go back to work one day, and do some volunteer work, I am sure that will help.

Have a great time on your trip, I am so jealous, I love Disney so much and we had such a wonderful time in November. If you are a ride enthusist..ride Test Track for me, it was closed when we were there.

Be strong and of good courage!

 

 

ccfighter
Posts: 359
Joined: Jan 2012

I have a friend who is a stage 4 prostate cancer.  His mets are almost all to his bones, spine, legs, ect.  He has had radiation to the spine and to the leg.  he now walks with a cane but his pain level has been greatly reduced by the radiation.  I would say that probably the issues you have with your leg are a result of the surgery combined with the radiation.  I know that since I had radiation to the pelvis, my pet/ct's refrence reduced bone marrow activity in the pubic bones as a result of the radiation.  Now that I am going on chemo again my oncologist has told me that I will pretty much need neupogen straight out of the gate because I already have compromised bone marrow production.  Since your cancer has mets to bones and the treatment has been targeted at them, your fatigue is probably caused by the slow bone marrow in giving you back all the red and white cells.  Result is fatigue.

The ablation sounds intersting and alot easier than surgery.  I hope that you are back to 100% soon.  My cancer is so sneaky that I dont even have pain or symptoms of the tumor, only symptoms of cancer in general.  I get fatigue really bad, with achey eyes.  I also cant seem to gain weight.  My appetite is not great but even when I feel like I am eating more, my weight wont change.  It scares me.  Though I count my lucky stars that I have not had pain yet. 

Have you looked into any immune therapy?  Like dentric cell vaccines?  I know that your cancer is rare and that there are few clinical trials aimed at "vulva" cancer, but some for solid tumors.  Germany seems to be leading the way on this type of treatment.  I am interested in it even though my oncologist says that it is not worth it.  Every one is different.  Though it may not work for the majority, I know that it works for some.  How do I know which one I am unless I try.  The only problem is that I can not find a safe place in which to make an attempt.  I dont know who to trust.  I hear there is a doctor in NY who does a lot with the immune therapy and combining natural healing herbs with modern medicine.  I have forgotten his name.

I am so excited about disney.  I have been several times when I was a kid.  My uncle lived in Orlando and my grandmother in Crystal River and we would vist every year.  The last time I went I was about 16.  My kids have never been though.  They are 5,7, and 9 and the perfect age for the magical experience.  I am sure my favorite part of this trip will be watching their faces light up, all their excitement.  Its precious.  We have decided not to tell them and suprise them at the last minute.  We are going to put them in the car Friday morning to take them to school but just keep driving.  I cant wait to hear them scream when they finally realize they arent going to school and we tell them what we are really doing,  AHHHHH! (Happy scream!)

love, hugs and positive vibes,

Jenny

funbeadgirl
Posts: 150
Joined: Jan 2009

I am so excited for your kids, what a cool way to tell them they are going to DIsney! You are probably on your way right now!

I checked into the clinical trials with vulva cancer, they are targeted mainly at the squamous cell type, mine is an adenocarcinoma. I did have a sentinel node biopsy in first surgery and that is in clinical trials for VC. I had the Neupogen shot the day after each of my chemo cycles, that was a rough road, the bone pain was indescribable. My counts remained good through out and are back to normal now. I think the fatigue is just from being older and going through a lot in past 16 months, I don't bounce back as quickly as I did when I was younger.

My weight has slowly crept up over past 4 years, I had lost 42 lbs. just before diagnosis, and gained 30 back. Since I had leg issues, walking for exercise is very hard, I can't get my heart rate up enough to make it a cardio workout, so I have switched to a recumbent bike, we'll see how that works. It is very discouraging.I started gaining weight when I started chemo, I had so many steroids, I think that played a part. And I am 60, so losing weight isn't the easist.

I am looking forward to having another x ray of my leg done in a month or so, to see if there is any new bone growth. Physical therapy has been helpful and I feel as if I have turned a corner in the past week, hopefully I can keep it up.

I will look into the immune therapy, problem is that is not usually covered by insurance, and with not being able to work very much over past 4 years, we find ourselves in a little bit of a tight situation.

I hope you are having a great time at Disney, what a great memory to make with your kids.

ccfighter
Posts: 359
Joined: Jan 2012

Just got to Disney!!  This is great!  The kids are bouncing off the walls!  So much fun.

Im glad you are making progress in physical therapy.  I hope things are going really well for you.  When I get backat have a third opinion at John Hopkins and then start chemo the next day.  Ugg.  But, should lose the hair do there is a plus.

Hugs

funbeadgirl
Posts: 150
Joined: Jan 2009

I bet your kids are the happiest kids in the world right now, you are such a great parent to surprise them that way. Just a note about losing hair..I loved being bald, it was so easy and such freedom. It gave me a chance to really focus on my eye make up. Losing the eyebrows and eye lashes was a bit hard, but I was able to work around that also. I can give you some tips for that if you like. I bought 2 awesome wigs and hardly wore them. I would highly recommend waiting until after you lose your hair to decide if you want to be a wig person. My sis crocheted and knit me some really cute caps for the cold weather, but my head was so hot and sore most of the time, I just went bald.

Enjoy every second of that vacation, it will give you many nice memories to focus on while you are going through treatment.

ccfighter
Posts: 359
Joined: Jan 2012

I rode test track.  It was fun.  Race car simulation.  Didn't get to design my own though.  Just not enough time.

 

I did lose my hair with the carbo/taxol so I've already been through that.  This time with gemzar I don't think I will lose it.  I hate that it makes my disease so obvious.  Otherwise I could really care less.

 

We are having a great time.  I hope all you ladies are feeling good.  Hugs.

Ewilsoncobb
Posts: 1
Joined: Sep 2013

Ccfighter,

I was so excited to see your posts on this site. I have looked everywhere for anyone with this particular cell type and even Emermons Angels couldn't find anyone. They had never even heard of it. I was diagnosed in 2011 and had a radical hysterectomy leaving one ovary, and node dissection where they took 18 nodes and 11 were positive. They later ordered a PET and found that I had it in my supraclavicular nodes as well. they said that if they had know it was that far they wouldn't of done surgery. They initially said I had stage IIB2 before the scan but the pathology came back as stage IIIB. It is also poorly differentiated which makes it much more aggressive. 

After 3 rounds of cisplatin/Topotecan and 3 rounds of taxol/carboplatin I had clear scan which was unheard of they said at MD Anderson and my local oncology clinic. However, after almost two years I have a node in my chest that is lighting up and had an abnormal pap. I am having a follow up pap in three days ( last one was in July). They want me to see a surgeon about the node in my chest to have it removed, but my feeling is that if the pap comes back positive then that's really not going to get it. Also I am afraid of the micro metastasis that they aren't picking up due to it' s molecular size. I mean, if it's in one node, it had to travel to get there and most likely left behind cellular reminants along the way. I am a very active person doing weight lifting and running and another surgey is just.... Well, it would be a disaster. It was hard coming back from having myself totally cut open the first time and a chest surgery would be just as bad if not worse I am sure. 

Everything I have read in the peer reviewed papers states that in the case of ASC there is no cure and that chemo is strictly palliative. I was just wondering how you are doing and if you are having any luck with the current rounds of treatment. 

ccfighter
Posts: 359
Joined: Jan 2012

It is so good to meet you.  We are a rare type of cervical cancer.  I did meet a nice young lady on hystersisters who also had adenosquamous diagnosed 1b2 a few months after me, but she has since passed away.  That was very hard for me.

i am so glad that chemo was so effective for you.  You are lucky, as cervical cancer in General does not respond well to chemo.  I had a lung nodule show ip on post treatment pet/ct two months after finishing treatment.  My oncologist of course was not very positive as this suggests chemo resistance of my cancer.  I had done carbo/taxol as well as the cisplatin/radiation.  Still had a very quick recurrence, almost like persistent disease since it was so close to the end of treatment.  I had VATS wedge resection of the nodule that was around 9mm in my upper right lung lobe.  I also had a second tumor removed from pelvis that was in my abdominal wall and grown into my small intestine.  

I am now 9 months post surgery and NED.  I tried more chemo between Feb-May with gemzar plus cisplatin/carboplatin/oxaliplatin but became allergic to the platinum and only got about three rounds of it in.  May pet/ct and August ct show NED so I am very happy. My cancer is so aggressive.  I really needed this break.  And I feel good.  

Where is is the chest tumor?  Can they remove by VATS?  I don't notice the missing part of my right lung.  I am still active and enjoy everything I use to.  Surgery is life saving And at the very least provides more quality time.  Please let me know if you have any questions.  Hugs.

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