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UPSC Stage IVB update on disease progression/plans

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Updating how my UPSC disease is progressing and treatment choices I am making. I had responded in rather great length to our fellow UPSC sister Bonniep in regard to her ‘freaked out’ post – freaked me out too! Since then I have been experiencing what to me seemed like possible symptoms of cancer advancement that was getting quite concerning. So while waiting for the planning to be done for a one-shot stereotactic radiation to a spot on spine, I opted to return Thursday to my gyn onc letting him know I was not handling the waiting game well anymore and had serious concerns of cancer advancing too far to respond to any chemo option. His response was that at this stage it makes no difference how soon we start, it is dependent on whether or not there are symptoms that are interfering with QOL. The tumor load is not the issue, as was my concern. Also, the sooner I start, the more I expose the cancer to a chemo to which it can develop resistance, so early is not necessarily better.

Symptoms I was dealing with that were new were a late afternoon extreme fatigue which would be followed chills and a low-grade fever as I had experienced the day I was admitted to the hospital for Easter (due to incidental finding in ER of extreme low sodium level which could indicate brain mets). The fever was self-limiting, usually gone in an hour or so with no intervention but rest. While in the hospital with the unexplained fever and low sodium issue, it was noted that the fever could be an effect of tumor advancement and toxins being released into blood stream. No cause of fever was found despite extensive work-up. MRI of brain with contrast was normal – yeah! Then I started noticing what I thought was a fat pad developing over my pubic bone – this seemed odd and I wondered if it was related to my recent treatment with tamoxifen. But then I noticed it tended to disappear by morning. As days passed I noticed a late in the day fullness on the left side of my abdomen only, then it began extending into my left thigh, and then even down to ankle. I did not have extensive lymph node removal during debulking surgery since it was already presumed I was Stage IV from PET scan showing hot spot in spleen. Gyn-onc just did sampling of 8 nodes, 2 ea from 4 areas. So I did not think this could be lymphedema. As well, recent scans showed size reduction of a single enlarged node in that area. My gyn onc is not sure this is ascites developing – my concern – but due to unusual distribution/presentation is lymph system related. My increasing fatigue had already had me give up most of my activities and I told him all I had left to do was sit and think about the cancer – and that was not much QOL! PET/CT in Feb noted first organ involvement in lungs and liver. May PET/CT showed advancement while on conservative tamoxifen regimen however most lymph nodes had reduced in size. Makes one more aware of heterogenous nature of mets – could be some cells responded, others not. He had me get worked in to start chemo the following morning. I am to do single agent carboplatin every three weeks as blood counts allow. I cancelled the planning for radiation to possible T2 vertebra spot as Rad onc not convinced it was my most pressing issue since spot did not light up on PET and was a sclerotic lesion (on outside of bone, not lytic – eating into bone).

My journey with this disease most likely began in 2005, but was not diagnosed until I was Stage IVb by fall of 2007. I had debulking surgery in Jan 2008 and have been dealing with recurrences since 2009. For an aggressive cancer such as this I feel I have actually had a pretty good run. For that I am thankful and still take every day as a gift! I have found it helpful myself to read of others experiences so thought I would share what I am currently going through.
Stay well, Annie

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Wishing you an uneventful new course of chemo and hoping it will put a hault to further advancement.

Hugs,
Suzanne

nempark
Posts: 580
Joined: Apr 2010

Hi Annie; I haven't posted in a very long time, but I read all the time. My lovely daughter is now battling Leukemia and I am just exhausted with the whole situation. Anyway, I read your post and just thought I must say something to help you through this ugly ordeal.
You are a strong and caring woman; you took the time to write not only to update us on the board but it is to help us to learn from what you are going through. Annie, as I write to you I will pause and say a prayer. This is my Prayer :Oh, Great Creator of every living thing, I pray that you keep Annie in your fold and give her the strength and the endurance to continue on her journey with faith and to be assured that what ever the situation she faces she will be at peace and would be able to deal with this disease. May you comfort her and help her and her Doctors to make the right decision in order for this ugly disease to subside. Thank you Dear Father in the heavens, in Jesus name. Amen. You be well Annie and do just that, take every day as a gift. Big hug for you. June.

HellieC
Posts: 428
Joined: Nov 2010

Oh Annie - you are having a time of it! I do hope that the latest chemo regime will bring you some relief. You have travelled a long road with this unwanted companion. I will remember you in my prayers. Thank you for thinking of others and sharing your experiences - all knowledge is valuable in this fight.
Kindest wishes, Annie
Helen xx

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thanks Suzanne, June, and Helen for your kind thoughts and support. The chemo was not too bad, just some mild nausea and fatigue over the weekend, feeling much better today. Now to see if it does some good work and that blood counts allow me to keep up with the schedule.

June, I do hope your daughter's treatment is successful - it must be very difficult to see your child have to endure so much. My thoughts and prayers go out to her.

Annie

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

I am glad you tolerated your carbo okay. I hope your blood counts hold up for you. You have been through so much already. Sorry your quality of life is not what you would like. You remain in my thoughts and prayers. In peace and caring.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thank you, Ro! You are on a much more arduous chemo regimen and yet you keep on going with your life and your gardening, etc. An inspiration to me for sure! I hope you are continuing to get good response and will be able to take a break in the near future. Sending positive healing thoughts and prayers to you too.
Annie

Karenhopeful
Posts: 38
Joined: Jan 2012

I am facing stage 4 grade 3 with large tumors in both lungs, small tumor in abdomen, invasion of rib by abutting tumor, small shadow spot on brain. I am happy to hear that you are still here after being diagnosed in 2007. I had my first cancer in 2007. It was stage 1 grade 3 and I was told only a 5% chance of ever getting it again. Bad Luck. In November of 2011 I started having back and chest pains and was finally diagnosed in January 2012. I've had 4 out of 6 chemo that have shrunk the tumors a little, but the rib was new and shadow on brain may be new (didn't scan there ever before). We are doing radiation on the rib bone (which is also fractured!) and all soft tissue around it because the tumor is heading for my top 4 vertebrae, and pressing on my esophagus. If it presses on those back bone nerves, I'd probably be paralyzed. That tumor is also pressing on a nerve bundle that has given me Horners Syndrome: I only sweat on one side, painful nerves under my arm, sore back, and now my eye is also drooping and pupil slow from affected nerves. I keep hoping the tumor shrinks and my nerves come back to normal. I will include you in my prayers. Let us hope we both can hang on and even improve!!

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Karen, that is good news that the tumors have been shrinking - are they ones that are being treated with radiation or others as well that are responding to the chemo? Two weeks out from my first chemo i am having improvement in my symptoms - no more evening chills/fevers or night sweats, and diminishing of swelling in abdomen/thigh. My energy level is improving bit by bit - though not running any races that's for sure ;-) Just able to restart some light yoga after not having much energy to do so for several months. I also am having hip pain which interferes with the walking I used to do - no one is quite sure if this is just a mechanical (joint/muscle spasm) issue or if there is some cancer issue. I can feel a lymph node in my groin area on the other side that swells but CT only showed decreased size of another node in that area and nothing else new - so as my gyn-onc always tells me, the scans sometimes don't really show the full picture of what is going on inside.
I will keep you in my thoughts and prayers with positive thoughts that we will continue to be here and fight on!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm glad that you are getting some positive response from treatment and hope that it continues.

Annie, so glad you are getting strength back and that symptoms are less severe.

You are both in my continuing prayers. Mary Ann

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

You are a wonderful source of strength and hope and the ole dust oneself off and start all over again. I personally Thank you for being such a wonderful role model.
Yesterday was my first round of Radi Tx on three Lymph nodes, one clavicular, one aortic area, one stomach wall. Previous rad succeeded in shrinking pelvic. Lymph nodes, but as onco said, cat is outta the bag, or something like that, and little buggers are in 'distant met. mode'.
Under The Humongous Rad machine a thought came to me that Got me outta my recent blue funk, and I wanted to share it with you guys, sister warriorettes of this scourge, There is an orchestra of people , professionals, healers, prayers, friends and family actively working to extend our lives. No healthy person can say the same thing!
Keep On singing!

Chaya Sara Zipora

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thank you Chaya Sara for your kind words and sharing those positive thoughts. You are so right about that 'orchestra of people.' They are in so many places. I attended a Cancer Survivors event recently at my cancer center and was so reminded of the many resources and support services there for the asking. Every little helps!
Take care, Chaya Sara,
Annie

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Update after chemo round 2
After one round of carboplatin, ca125 took a nice drop from 9937 to 6536 - still kind of shocking numbers that i am so not used to. It was 399 in late January. So I am hopeful the carbo is having some effect. I feel much better since starting chemo, save the first few days. I am able to get back to fairly regular yoga routines - almost daily - which i have not had the energy to do in many months. I was even able to make a 160-mi round trip drive to attend my Son-I-L's PhD hooding ceremony the next day. Though I was aware the good ol' steroids would wear off soon and did not stay for the evening dinner celebration. But it was so good to be able to do what i did. I no longer have my evening 'fever' episodes, the swelling is quite notable decreased in my lower L abdomen and thigh, and I do have more energy in general. I was pleased my blood counts were good - not even borderline. When I was on Doxil and then Gemzar in 2010, meeting blood count parameters was a constant problem with many delayed or missed cycles. So the hope continues for success!
Stay well my fellow sisters!
Annie

pakb56
Posts: 141
Joined: Jan 2012

This road we travel is a bumpy one. The comfort I find is knowing I am not alone and follow those that came before me, walk along side such a wonderful group of women and, hopefully, make the journey easier for those that are following.

I wish you love and peace and the strength to deal with all you must. Why this disease has chosen us is a mystery but we have cancer IT DOES NOT HAVE US.

Take care to you and all of the "sisters of my heart".

Pat

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

I did not realize you marker had risen to 9937. I am glad it is dropping for you. Glad you are getting more energy, too. Glad also that your fever is gone and the swelling is improved. Good news about the blood counts, too. Hope you continue to have good results and continue to feel better. In peace and caring.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am very glad you are feeling better and the symptoms are diminishing.
You are a very strong, positive woman.

As always, you and everyone in the gang are always in my payers.

LaurelWillow
Posts: 13
Joined: Mar 2012

Hi Annie,

It does sound like the carboplatin regimen is working to stay some advancement. You are reaping the benefits already. If you can remain on a low dose that does not compromise your overall health you may be on to something for a good long time.

Please continue to share with us your journey as it is a learning curve for each of us.

Best wishes, Laurel

HellieC
Posts: 428
Joined: Nov 2010

That's such a good drop for the first round of carbo, Annie. And it looks like it is working if your symptoms and energy level are improving.
Long may it continue!
Helen xx

pakb56
Posts: 141
Joined: Jan 2012

Annie..hope things go well and improve. I have found a comfort in praying for all of us each night and the wonderful sisters of this board are always a part of that.

As you said, I treat each day as a gift because We don't know what the master plan is for us. Cancer has changed me and for the better. I find I have strengths and beliefs I did not know I was capable of. I am so grateful for that.

You take care. We don't walk this journey alone.

Pat

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