thanksgiving

I was not expecting the news I got today. Not at all. I hadn't prepared myself for it, and was not ready for it. I've had nearly 2 1/2 years of not such great news in regards to scans. I was prepared for more not such great news (well - as prepared as one can be for that!)

I've had three treatments of Avastin (four now - counting the treatment I got yesterday). The scan results showed TUMOR SHRINKAGE! There was no new growth, and the tumors that are there showed shrinkage, some nearly 1/2 in size from the last scan! My CA125 has dropped to 16 as well, which is the lowest it has ever been. I'm always happy to hear "no new growth", but with tumors shrinking too? That is too often unheard of in ovarian cancer patients!

As you can tell, I am a little at a loss to process this information. Don't get me wrong - I am absolutely thrilled with the news! Once again, I am so thankful that I was led to my current Doctor and treatment team. I do feel cared for there, and cannot sing high enough praises for the people at Cancer Treatment Centers of America.

I can just relax now in regards to my current treatment. I know it is helping. It may not be an absolute cure, but it gives me time.

The only side effects have been headaches (dull, pounding headaches - not too strong), and an increase in blood pressure. My blood pressure is not high enough to cause concern, but if it gets higher, I will have to take blood pressure medication. That is simply a side effect of the Avastin, and not something permanent. I also have more headaches (probably due to the blood pressure). But overall I feel great, and have no debilitating side effects.

I guess I'm still a little stunned by the news :) I'm sorry for the hastily thrown together post, that I hope makes a little sense!

Happy Thanksgiving to those in the States!

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...

Bad blogger!!

Yes, I am a bad blogger. ;) Summer has been busy, and I really haven't had much to say.

I did let my two year "hysterversary" and cancerversary go by, without much thought. I didn't even remember it until the next day! It wouldn't have been something to celebrate, but I wouldn't really want to mourn it either. At this point, it really is just another day (and every day on this earth is a good one!!).

My last appointment went well - except that my CA125 went up one point - from 18 to 19. A one point change is not a huge deal (and my doc doesn't think so either). I know she is right, but I am a bit obsessed with that stupid number. We'll see what happens next month.

I hope you all are doing well, and I'm sure I will update again after my mid-August appointment. I know - I'm a BAD BLOGGER!!! :)

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!

Its been a while...

since my last post! Sorry to take so long to update. We have been busy though, and cancer has been (mostly) the last thing on my mind.

My last doctor appointment showed my CA125 as plateaued at 20. I wish it had gone down, but I'm very happy it didn't go up! ;) I have a CT scan tomorrow, and then find out the results of that, and another CA125 on Wednesday. I can't say I'm not worried. However, I have had no significant pains, and I feel just fine. Hopefully, that is a portent of good news to come (fingers crossed...)

Another thing that helped take my mind off of cancer, was our fabulous, wonderful, refreshing, invigorating, and fabulous (I know, I'm repeating myself!) vacation to Alaska! WOW. What a beautiful place!



Here is a picture of me and my favorite husband in Glacier Bay. The image does not capture the color and beauty of the place very well.

We saw humpback whales, orcas, moose, grizzly bears and their cubs, caribou, and Dall sheep (white sheep that live in Denali). We stayed in a cabin by a rushing creek, that lulled us to sleep at night.

We saw Denali (also known as Mount McKinley) which often is shrouded in clouds. In the pic below, it it the tall whitish mountain towering over the others. Again, the picture doesn't really capture its magnificence. The dark mountains in the foreground are like the Rocky mountains. Denali - the tallest mountain in North America - significantly towers over everything else.



It was light out essentially all night. It only got as dark as a typical sunset. The only thing I missed was seeing stars - you just couldn't see them there with all the light.

I highly recommend taking a cruise through the Alaska Inside Passage - and then going on to Denali National Park. It is the most beautiful vacation I've ever taken.

I should update again soon!

A beautiful day!

Our team - It consisted of people from work, current wacky friends and their friends, and high school friends! It was perfect weather in Chicago.



At the finish line!



We had a great time, and our team brought in over $4,000. Wow!


A bunch of us went out after the walk for pizza and beer. The waiter saw all of the cancer shirts we were wearing, and asked us if "Anyone caught cancer" on the walk... Hmmm. I don't think he thoroughly considered what he was saying. He got a lot of dirty looks. It just goes to show that people really don't think before they speak. I did not take it personally, but it really offended some of my friends who have other cancer survivors in their lives.


It certainly made the day even more memorable, and gave us something to laugh about in the future! ;)


Everything else is just fine. I still feel great, and rarely remember that I have cancer. Work is keeping me busy, and I am still finalizing our vacation to Alaska (cruise) plans.


My next appointment is May 20, so I will probably post again around that time (you have been fore-warned!).

Earth day and Doctor visit

Hello!

I had a doctors visit today, including blood work. My CA125 continues to drop - now it is 20! Based on that number and the fact that it is continuing to decrease, I pushed back a CT scan originally scheduled for May - to June. I'm starting to be concerned about all of the radiation I've been getting. It would really suck to be cured of ovarian cancer - only to get some other type of cancer from the treatment and scans!

So, I am considering myself cancer free again until next month - when I have blood work and a doctor visit again.

Things are going well! The weather here in the midwest has been getting better and better. I've been walking and bike riding, and I have been wholly present at work again. I feel great, and am really enjoying my reprieve.


Today is earth day. I am a rabid environmentalist, who really practices what she preaches. Some simple ways to make changes every day are:

Try to avoid plastic! Plastic in bottles, bags, packaging, lining cans, etc. It amazes me how much plastic there is, and how it is almost impossible to avoid it. I hate drinking out of plastic bottles - I can 'taste' the plastic sometimes. So I buy a glass bottle of ice tea (like at any drugstore - snapple, arizona, etc.) rinse it out, and use that as my water bottle. It is dishwasher safe, and totally recyclable when the screw on cap finally gives out! :) I just use filtered water from my tap to fill it up. If you have bad water - consider leasing one of those water coolers for your home and fill up bottles with that instead of buying plastic water bottles.

Use reusable bags for groceries. This is one of the easiest and best changes I have made. What used to fill up ten plastic bags in the store, easily fits into two or three cloth bags. They are also easier to carry - and don't cut off your circulation like the plastic bags do when they wrap around your hands.

Recycle - and if a place you go to drink or eat doesn't recycle - call or e-mail them and ask them to place a bin in their facility. It is amazing too how places will listen if you call or e-mail them about something simple like that. Recycle everything you can.

Pay attention to the packaging of what you buy. So much of our waste comes from packaging. Again, e-mailing or calling a manufacturer about packaging is a simple and effective way to let them know you are paying attention.

If you go to a park, or on a hike and you see garbage - pick it up! If you camp, leave the site cleaner than when you arrived.

I could go on and on (and on and on and on).

Don't we want to leave this world in better condition than when we found it? :)

NOCC Walk

Once again, I am walking with the National Ovarian Cancer Coalition (NOCC) for ovarian cancer awareness. I have some great friends that are also walking with me. We had a great time last year, and there are even more of us this year! Just keep your fingers crossed that the weather will hold...

If you feel so inclined, please donate! I understand that donating is difficult in these tough times, but even a few dollars can go a long way.
http://www.active.com/donate/noccil2009/NNeuman3

Otherwise I am feeling fine! My energy is good, and I really feel normal again (for the most part!). You will note that I don't blog very much when I am feeling good and normal. ;)

Pretty good news

My results were much more good than bad. My doctor says that a nodule on my omentum (which was there before) is a little bigger. It is 1.5 centimeters now (not sure what it was before). She is not sure if it is bigger due to cancer growth, or bigger due to inflammation from the immune response from the vaccine. We, of course, hope that it is inflammation from the vaccine. The spot on my liver has stayed the same, but she is not certain if that is tumor or scar tissue.

This really is good news, because there was no explosive cancer growth as there was when I was on both the Taxol/carboplatin and the Doxil chemotherapies, and no new areas of growth identified (whew!).

Of course, we had hoped that *nothing* would show up on the scan - but we are very satisfied at this point! So is the doctor.

It also helped that my CA125 is continuing to drop. It is not really a reliable number for me - but if it increased, we would be concerned. It is now 23 (Michael Jordans number - said my favorite husband). ;)

The best part though, is NO CHEMO. My doc is going to give me another CT scan in late May, and we will see what is going on then. I am thrilled that I get a two month break from cancer! I am going to enjoy every minute of it.

Thanks so much for caring about me and my favorite husband. We truly appreciate all the kind words, prayers, good energy, etc. The battle is not over, but I'm beginning to feel like I am now on a winning team!

*gulp*

CT scan today

Results tomorrow

On the right track!

My last weekly vaccine was administered today, with no problems. I also had a doctors exam and she said that everything 'felt' just fine. Most importantly my CA125 is now.........

27

:)

That is down from 45 (Feb), from 79 (Jan), from 175 (Jan), and 360 (Dec). At this point we don't know if it is from the vaccine, or if it was the surgery and Taxotere. It was some excellent news. I was really stressed and worried about it last night (I know, I know... worry doesn't help!) When she told me the number, I had her repeat it several times. 27 27 27

I still have appointments with the research team, including Delayed Type Hypersensitivity (DTH) testing to be done at the end of the month, and a booster vaccine shot in six months. I also will see the doc and have a CT scan at the end of the month. That is good, because the CT scan is probably more reliable than my wacky CA125. When everything shows that I'm clear, I will drop down to visiting her every three months. The doctor will still be keeping a close watch.

For now, I consider myself cancer free. The days leading up to the CT scan and doc visit the next day will probably be tense, but I have a few weeks of no cancer!

Just in time for spring :)

:) :) :)

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 :)

My 15 (or 3) minutes of fame

View at your own risk... ;)

http://www2.myfoxchicago.com/dpp/health/ovarian_cancer_vaccine

and

http://www.wgntv.com/video/?autoStart=true&topVideoCatNo=default&clipId=3397268

Anticlimactic!

The doctors visit went fine yesterday. And yes - I did recieve the first vaccine! It was just a small injection, beneath the skin creating a 'bubble'. Here is a rather unflattering picture of me getting the shot:



The remaining ones will be given in my upper arm.

I guess I misunderstood part of the trial. I will get one actual chemotherapy session on Monday - with cyclophosphamide. It is supposed to help to 'boost' my immune system. Then next Thursday I will get the vaccine again, but it will be mixed with Bacillus of Calmette and Guérin (BCG) (I think that is to trigger my immune system too). I will get six more vaccines with the BCG, given weekly, and then a booster shot at six months. My skin reaction to the vaccine will be the indicator as to whether it is working or not.

It was anticlimactic to get this small shot as a treatment, after all of the surgery, chemotherapy, and other stuff I've been through. It seems almost too simple to be effective! :)

Thanks to all for your continued support and uplifting comments!

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.