Recurrent cervical cancer

ccfighter said:

I have a friend who is a

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

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 said:

Just got to Disney!!  This is

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

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 said:

I rode test track.  It was

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.

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.