A perfect "10"?? Er, not quite...

My CA125 (tumor marker) number has been steadily dropping.  This week, it went from 15 down to 10!  That is the lowest it has ever been, and it should indicate in most normal women, that the cancer is non-existent or decreasing.  However, I have never been normal. 

My CT scan showed some areas that appeared to be tumor implants on my liver, so my doctor sent me for a PET scan.  They got me in the very same day for that scan.  I love Cancer Treatment Centers of America!!  :)  The PET scan confirmed that there is cancer on my liver.  To me, this was pretty good news.  If any cancer was present, I was sure it would be all over the place (like it usually does).  The fact that it is currently confined to the surface of my liver is good news! 

My doctor gave me three treatment options: Abraxane, Taxol weekly, or Taxotere.  They are all part of the 'taxol' family of drugs.  She thinks Abraxane (Paclitaxel) is the best option, as it is wrapped in an albumin nanoparticle that delivers the drug into cancer cells without the toxic solvent usage in Taxol.  I'd be interested to hear from anyone who has had this drug in the past, and their experience with it.  The main side effects are joint pain, hair loss, and low WBC and RBC counts. 

I will let them know my decision next week, but I'm leaning towards Abraxane.  I had Taxol a long time ago (with Carboplatin), and my cancer continued to grow during that time.  I am hopeful that with the better 'delivery' method for Abraxane, the chemo might actually do some good.  Also, my doctor promised me that we would scan again after a few treatments and see if it is helping.  My CA125 is obviously not indicative of cancer activity at all, so scans are the only way to tell what is going on in my body.  If Abraxane isn't working, we'll be able to switch to something else pretty quickly. 

I feel pretty good.  I am not as energetic as I used to be, but I am able to work full time, go on vacations (we just got back from Vegas - lots of fun!), and I have good quality of life right now.  I know my time is running short.  I plan to continue to enjoy each day.  I am almost at my five year survival mark (July) which is not common for women with recurrent ovarian cancer. I am so very grateful for the time I have been given. 

My CT scan also showed that I have a small hernia.  I noticed an achy feeling there for a few weeks (I think I did it when I was trying to lift my luggage for Vegas - oops!).  Right now it is not a concern, and it won't be fixed until I am off of chemo.  I'll use it as an excuse to get out of house cleaning  ;)

I hope everyone is doing well!  Enjoy the beautiful spring! 

Yearly update

Honestly, I did not mean to let a year go by before updating. I was busy living my life, and did not have much to say about cancer.

Everything has been going well this year! My appointments through May 2011, showed my CA125 as stable and nothing suspicious was noted during my doctors appointments.

Fast forward to late September. My CA125 jumped from 14 up to 20 which was still in the so-called 'normal' range. However, my CA125 has never been a great indicator for me. I knew then that something was wrong. The doctor also 'felt' something during my exam, and ordered a CT scan right away. The scan showed that the cancer was back - and was all throughout my abdomen. Some of the larger tumors were identified in/on the colon, spleen, liver, omental stub, and pelvic area.

The thing about having recurrent cancer - it's like riding a bike. We found ourselves getting right back into the flow and rhythm of it. My favorite husband (FH) and I took a moment to process everything, and then got down to the important discussions with my doctor. She said that I would be a very good candidate for HIPEC (surgery with heated interperitoneal chemotherapy). The surgery included another full de-bulking (removal of all visible cancer) and then heated chemotherapy pumped throughout my abdomen for 90-120 minutes. The combination of the heat and the chemotherapy (Mitomycin-C) is supposed to help kill and sensitize the cancer cells.

My FH and I had discussed HIPEC in the past, and knew that was something we were interested in trying. So, I had the surgery on Monday, October 17. It was a 12 hour surgery. They removed my sigmoid colon, spleen, gall bladder, appendix, omentum, and assorted tumors throughout my pelvic area, and on my liver. Oh - they also removed that plastic tube that remained from the 'deportation' discussed in my last post!

I was in Intensive Care Unit (ICU) for two days following the surgery. They removed the tracheal tube on Tuesday. I was so weak, and felt like I had been hit by a truck, but the drugs helped :) I had a catheter, a nasogastric (NG) tube, and multiple tubes entering and departing my body. I started feeling better on Wednesday once they got me up to walk. No food or drink (because of the NG tube), but I didn't care. I wasn't hungry.

Once they removed the NG tube and catheter on Friday - I felt even better. They started me on clear liquids Saturday, non-clear (pudding, cream soups) on Monday, and solid food on Tuesday night. I was healing well, and we were on the fast track to get out of there on Thursday or Friday!! (cue music indicative of impending doom..... :) )

My temperature started going up and they found out I had a blood infection, from my port (the implant in my chest that is used for chemotherapy infusion). They removed my port on Wednesday night, and put me on IV antibiotics. Thankfully, that cleared the infection right up.

I was discharged on Saturday - 12 days after surgery. I took the following three weeks off of work. I went back to work the week of Thanksgiving, which really helped me heal faster. I need to feel useful - and I sure wasn't useful during my stint at home.

Yesterday, I got my new port installed (short surgery), and started chemotherapy. I am on Alimta (Pemetrexed), which is supposed to be mild, with few side effects. The way I understand it, Alimta inhibits the action of 3 enzymes that are needed for cancer growth. The infusion didn't take long.

I have to take folic acid and get a vitamin B-12 shot. I also have to have lab work weekly (which I can do nearby home - and they'll fax the results) to ensure my blood counts remain good. They gave me anti-nausea medicine too which I'll take for a few days.

Emotionally, we are doing good. I feel that I am at the right place for treatment and that I am doing the right thing to get more quality time. I'll fight as long as it makes sense for me to fight.

So - that is what has been happening with me (at least as far as the 'cancer' portion of my life is concerned)! How are all of YOU doing?

PS I may not update frequently, but I will update soon if I have any side effects or issues with Alimta.

and another anniversary!

I realized late Saturday, that it has been three years since my hysterectomy, and subsequent Ovarian Cancer diagnosis. I honestly didn't think I'd make it this far when I was first diagnosed and two lines of chemotherapy (taxol/carboplatin and doxil) had no impact on my cancer. I imagined if I made it three years, I would be debilitated - as I see in other long term recurrent ovarian cancer survivors. But here I am - alive and thriving, and I wonder why. However, it is now an introspective 'why', and not a guilty one. The comments on my last post really helped me with the guilt. Especially Sams comment that my guilt will not do a thing for those other ovarian cancer patients-and she's right. It won't. What I can do for them and for myself, is to continue to live and enjoy my life, and every day that I have here on earth with my family and friends. That means no worrying about the future. The future will take care of itself.

I got to take my niece (my FH's oldest sisters' oldest daughter) skydiving! It was her request. She actually told me she wanted to do it when she was 16 (you have to be 18). She still remembered, and wanted to do it, and I was more than happy to join in on the fun. We couldn't sucker anyone else into going with us, but that was fine. I enjoyed this third skydive even more - it just keeps getting better! She really loved it too - so maybe a fourth dive is ahead!



Talk about not worrying about the future! ;) I couldn't wipe the smile off of my face the whole day! It was a great way to celebrate three years of survival.



Nothing else is new, except one sad note... I recently lost a facebook friend to ovarian cancer. You can see Sandhy's post about Diane on http://sandhysown.blogspot.com. I could not have honored Diane better than Sandhy did, so I'm not even going to try.

You probably won't hear from me until October when my next scan is due. But who knows? ;)

Celebrations

Recently, we celebrated my parents 45th wedding anniversary. My sister and I had a surprise 45th wedding anniversary party, that was a COMPLETE surprise to them! I still can't believe they had no clue :) My sister handled the bulk of the planning and work - and I handled the complaining :) I am not a party planner. My husband and I got married in Vegas, because the thought of planning a wedding completely terrified me. She did a fabulous job.

What was wonderful, was that everyone there seemed so happy to be there for my dad and mom. It really turned into a wonderful event. They have really been happily married for 45 years - it CAN be done! :) My favorite husband and I have been happily married for nearly 7 years, so we are on our way.

I had my CT scan and saw my doc Thursday and Friday. My news continues to be great! My CA125 remains at 14, and the scan shows no growth!! Holy cow. The calcified nodules are still there, but show no increase in size. The doctor said that the nodules occur when cancer "shrinks" and leaves behind calcium deposits. So there is no way to tell if cancer remains or not in those nodules - we just keep tracking them.

She is also incorporating a new biomarker blood test. Its the HE4 test, that is supposed to be more reliable than the CA125. Great - its another number for me to worry about!! :) I won't have that result for at least a week. I'm honestly not worried about that number yet, because of the scan and CA125 results.

The one bad thing is that I found out I was one of the very few women at my docs office that was getting "good" results that day. It makes me feel guilty and unworthy. Part of that comes from the fact that I have been extra tired, and I haven't accomplished anything lately. I work, and come home and sit on the couch :( I really need to remember to take my vitamins every day. I think the tiredness is from deficiencies, caused from past chemo treatments. What would those other women accomplish if they had my good news? I need to be re-motivated and re-energized.

Thank you all so much for your continued good energy and prayers! I have been off of treatment since January, and that is a miracle for someone with recurrent ovarian cancer!! Now, I need to get moving! :)

Tentative optimism!

First - let me apologize for not posting sooner. I have been busy with work, the holidays, and all of that wonderful daily minutia that we generally take for granted. I take it for granted too, but definitely less than I used to.

I have had a total of six treatments of Avastin, as a single agent treatment, for my recurrent ovarian cancer. I had a CT scan on Thursday, and a doctors appointment on Friday. Unfortunately for my doctor, and for me - she was sick and not in the office. I got to see her PA, who I really like though, so I still got my results.

The scan results were a little confusing to us. In some sections, it said "no change from last scan" but in others it said "no abnormal mass". The PA said this means that the cancerous nodules viewed on the last scan are either gone, or so small as to not be visible on the scan. Gone? Really?? I only have one calcified lymph node that is unchanged from the last scan. So, it sounds like wonderful news and I am now on "break" from treatment for two months! Wow! In two months I'll have another scan and appointment.

My favorite husband and I still want to talk to the doctor to clarify this report. It is the "no change from last scan" part that has my husband and I confused, and not quite ready to fully embrace that these nodules are really gone. Don't get me wrong - we are thrilled and very happy that I get a break so that my body can recuperate! We just want to clarify that the absence of information, means that there is no information available (no tumors or growths).

However, even if the scan showed no difference from last time, meaning nodules remain - that is still good news! No growth is always good news! But I hope you can understand our confusion :)

I plan to call my doctor next week (giving her a few days to catch up with her other patients) to make sure that the news is as good as it sounds. I will repost then to let you know too!

What a wonderful drug Avastin is! Its been the only thing in 2 1/2 years that has stopped my cancer from growing and even better - caused it to shrink or disappear! I also think that it is especially effective because of the vaccine I received. Both my husband and I think they are acting in conjunction with eachother - the vaccine preventing new growth, and the Avastin killing the active nodules.

So that is my update! I hope that you are all doing well and enjoying each day! I can promise that I will be enjoying all of mine! :)

Avastin

Sorry to have been gone so long.

Last month, my CA125 jumped from 19 to 24. That spurred me to request a CT scan, and my doc was definitely on board with that. We waited a month, and I had the scan this past Friday, and a doctors appointment yesterday.

The scan showed both good news and bad news. The good news is - still no NEW cancer growth! Wow! That is pretty amazing, and I believe it must be the vaccine that is preventing any new cancer implants.

The bad news is - the stuff that is there (nodules throughout my abdomen) has grown. Mostly, they have only grown only about 1/2 cm each in the three months since my last scan. My CA125 is up to 26 now as well. Although upsetting, this news was not wholly unexpected (since my CA125 had been creeping up).

So, we discussed options. The doc mentioned several different strategies. We can wait a few more months before doing anything - we can try hormonal therapy (I have to ask her more about this in the future) - I can have another surgery, and then have heated chemotherapy applied directly in my abdomen - or we can try Avastin. She really thought that the Avastin was the best option for me with "the minimal amount of cancer" that I currently have.

Avastin is a biological therapy (not really a chemo) that targets a protein found in many cancer cell teypes, and halts cancer growth. I think that it keeps the body from providing blood supply to cancer. (I will be researching this more). Usually, it is given in conjunction with chemotherapy drugs, but the doctor said that they have been using it as a single agent drug (meaning that Avastin is all I will be getting). I am happy about that, since I really have no faith in chemotherapy (I've been through three types so far, and none have worked in the least).

So I started treatment yesterday - nothing like jumping in feet first! :) I feel fine, and it is not supposed to really have many side effects. Of course, the side effects that it may have are bad. They are rare - but bad. For example - the worst would be bowel perforation. I may have high blood pressure, and have to take medication for it as a result of this medication. Also, it can cause some kidney problems. I have the treatment every three weeks - we will go three rounds, and then another scan to see if it is effective.

The big hope is that the Avastin takes care of the one lymph node that is located outside of my abdominal cavity (just outside of it). Then I would have surgery again to remove everything - and the heated chemotherapy directly into the abdomen. The heated chemo can only be used if cancer is confined to the abdominal cavity (for obvious reasons).

I will update again soon, I promise. Especially now that I am in full treatment again...

18

I had a pretty good appointment today.

Some good news - my tumor marker number continues to go down (!!!) My CA125 is now at 18. That is the lowest it has ever been since I started. After my first surgery, it dropped to 19, but it never went below that until now.

Most importantly, there is NO NEW ovarian cancer growth (!!!!!!!!!!) :) That is the best news! I was always good at growing new cancer while on chemo. It is good to know that my body isn't currently cultivating new tumors.

My doctor did say that the cancerous nodules that were there on the last scan are all a little larger (by millimeters). However, she thinks that is from inflammation caused by the vaccine working and attacking the cancer. That theory does make sense to me, because my arm is still inflamed too (from the vaccine shots). So, we are just going to wait and watch - which have never been strong points of mine.

Of course I wanted to hear that everything was smaller, or non-existant. ;) I guess I am just learning that everything isn't always as 'cut and dried' as I would like it to be. I want a certain answer, or outcome - but that is just not the way it works.

I have another appt next month - but no further scans planned for now. That is nice, because I hate the stress that having scans causes me!

Until next time!

Rising anxiety

My last weekly vaccine will be given on Thursday. Can you believe it is over already?? It seems as though this all just started. There will still be some follow up stuff, and a booster shot in six months. It will be strange though, not making the weekly trek for my shots.

I notice that I am increasingly anxious about the appointment on Thursday. Maybe it is because I will find out my CA125 number, and which direction it is now heading. Maybe it is because the vaccine portion is essentially over - and now we will see if it is effective. I guess I am just worried about what is next.

I notice my hands clenched into fists more often, tension in my neck and shoulders, and insomnia which always accompanies anxiety for me. I force myself to relax only to find my fists clenched again.

I am trying to distract myself by planning an Alaskan cruise for us in May or June. Still, the unknown medical future colors that too. Should I plan a relaxing trip or an adventurous one? I just don't know what my medical situation will be. I guess I will do a combination of both, and get all the cancellation insurance that I can! :)

Otherwise things are just fine. The increased daylight certainly helps my mood, and it is warming up out there. Work is going well, and I am still head over heels in love! Things could certainly be a whole lot worse :)

I'll update after my appointment on Thursday - have a great week!

Just checking in

Sorry I haven't been around, I just haven't had much to say.

So far, all is well with the vaccine. My upper arm where the shots were given is so sore and swollen - I'll have to take a picture and post it. A swollen arm sure beats the alternative though ;) I do have to figure out a way to protect it. There is a heck of a lot of arm slapping, shoulder grabbing and squeezing that happens in daily life. Does anyone have any ideas for me on how to protect it?

I forgot to report that my CA125 was dropping again, even before the vaccine started. It seemed like it went up into the 300's, then dropped into the 100's, then 79 (right before the vaccine). Now it is 45. I hope it keeps going down this time.

I feel fine, and continue to notice my energy levels rising. Now I just need to motivate myself to get off my butt! That is sure hard to do in the winter time. But spring is right around the corner, and our weather this weekend has been in the 50's (Fahrenheit). Also the sun is shining longer which feels good too!

I hope everyone is well. I'll try to be back soon :)

Inauguration and Vaccine

The date is set. I should (barring any unforeseen circumstances) begin the O-Vax ovarian vaccine trial on January 20. That is the day that my friend JKE and I planned to be in DC for the inauguration. She tried to get tickets, but couldn't, so we were just going to drive and get as close as we could to the action - to feel the energy, hope and wonder of such a historic moment! Instead, I hope to be starring in my own historic moment with the vaccine trial.

The public relations person from the hospital told me that two news channels were interested in interviewing me and filming the injection. Before, she had said it was going to be a newspaper interview. Yikes! But I haven't heard anything else yet. I'm not going to worry about it, until I hear more! In fact, I can e-mail her this week to see if that is still the plan. If so, I need to buy a new outfit (one that camouflages all of this chemo weight!) ;)

We had 7 inches of snow last night and I am enjoying the view out my window today as I work from home (thank God I work for an understanding and flexible company!). Have a great week!

Oh - Life of Joy inspired me to add a more recent picture to my profile. It shows that I have hair! It is curly hair and there is a lot of gluey hair product keeping my bangs (or 'fringes' for my European friends) straight.

The ball is rolling

Today at my doctors appointment, we started the anergic skin testing for the O-Vax vaccine for ovarian cancer. They injected me with small amounts of candida, tetanus, tuberculosis, and one other injection in my left forearm. It wasn't too uncomfortable. I am really getting used to needles. I have to go back on Wednesday to have the injection sites inspected, measured, and checked. Next week I have the DTH skin testing. After that, there is a lull (10-14 days) and then I start the vaccine, provided that all the skin testing goes as anticipated. Hopefully my immune system cooperates with the skin testing - and gives them the results that they are looking for!

Things are moving forward - and not a minute too soon. My CA125 (a tumor marker) is up from 101 to 304, in just a matter of two weeks (normal is <35). This high CA125 is so unusual for me. I feel some 'twingy' type pains every so often near my liver, and in my lower abdomen - I think it must be the cancer rallying for a comeback. There is no significant pain though. Nothing like the liver pains I felt last year during taxol/carboplatin (when I was sprouting a mighty fine specimen of a tumor). So I am not going to worry about the CA125 number. Again, like the nodules that show up on my CT scan, I need these to see if the vaccine is working. Right? Sure.

Christmas was wonderful! My Aunt and Uncle travelled the 450 miles to see us again this year. My sister just started a new job, and my favorite husband couldn't really take any more time off of work for us to travel - so this was really appreciated. I also had a great time with the in-laws and extended family.

I hope all of you had a wonderful holiday, and have a happy new year!

Doing fine

One day after treatment, and one day after my 41st birthday - I am doing fine.

First the birthday. I used to dislike birthdays, because they meant that I was getting older. Now I like them, because they mean that I am getting older. What a shift in my outlook, in just one year! :) My favorite husband and I will celebrate next weekend.

The doctor said that the red dots I have on my legs and stomach are a side effect of the Doxil, and to let her know if it gets any worse. She said to wear very loose clothing - so I have to go shopping for some mumu's. :) (Just kidding - for right now at least). The infusion went fine. I am just a little tired and cranky today (I blame the steroids!) and I am trying to keep my hands and feet iced to prevent any further side effects.

But so far so good! The side effects are certainly reasonable at this point. I just don't want to turn into a big, rashy, mess. Oh well, at least I have hair!

Oh - today two women I know are undergoing surgery for colon cancer. Please send your healing thoughts and prayers to Linda and Gerri today - and for the next few weeks! I'm hoping that both surgeries are totally successful, and that no further treatment will be necessary.