Help Irina to Fight Cancer

The trial is over.

2009-11-12T05:21:00.000-08:00

I had a CT scan last night in Baltimore. My cancer exploded! The drug is not working. I was giving 2 to 6 months to live.
I am seeing the oncologist today and still planning to pursue other treatment options, if I have any left.

My angel is always with me...

Irina

No energy

2009-10-23T05:34:00.000-07:00

I am going to get a blood transfusion today. My bone marrow is suppressed (low red blood cell) and I feel exhausted. I need a little "boost".
Last week was very hard one too. I ended up in ER again and was hospitalized with high fever and severe abdominal pain. They think I have an infection in my liver caused by my tumors or the anti-cancer drugs I am taking. I am on 3 types of antibiotics for the next 2 weeks hopefully to clear the infection. So many drugs, they make me sick! Catch 22.
The trial had to take me off the study for a week until my condition normalized. Last Wednesday I received a drug again, but at the lower dose.
These trips to Baltimore becoming very demanding on my body, last time I had to take a wheelchair at the airport.
As always, hoping for a better day to come.
Irina.

PS: Thank you for donating blood!

More meds

2009-10-10T08:50:00.000-07:00

I was wrong in my last post. My cortisol level is 20 times higher then normal (not 8).
My endocrinologist started me on a cortisol suppression drug right away. Thank goodness is was allowed by the study. After 2 days on it, my high blood pressure got even higher. Clearly I had to go on the blood pressure lowering medication. So, 3 more drugs in my collection.
Currently I am taking:
Dexamethasol - steroid replacement - daily
Lovanox injections (blood thinner) -daily
Tarceva- 100 mg ( provided by the trial) -daily
OSI906 -600 mg (provided by the trial) - 3 days on, 4 days off
Metopirone - ( cortisol suppression drug ) - 4 times a day
Metoprolol - (blood-pressure med) - 2 times a day
Spironolactone - (blood-pressure med) -daily. This drug has a WARNING: This medicine has been shown to cause tumors in laboratory animals. Isn't that just lovely!?
Lorazepam - (nausea /anxiety/ sleep) - as needed
Remeron -( depression) -daily
In addition I have a collection of pain, headaches, nausea, GI issues meds... vitamins and supplements.

I guess, whatever does not kill us makes us stronger.
Living strong, Irina

Good news / bad news

2009-10-01T08:23:00.000-07:00

Good news! I've got accepted into the trial! There is new hope for me!

Len and I drove to Baltimore last week, checked into the hotel and treated ourselves to a sophisticated seafood dinner in the Inner Harbor. It was quite nice; it's been a long time since we had a "date" like that.
Next day I had numerous tests done and the verdict was "OK. You are good to go. We can start you next week."
We drove back home to Boston, inspired by the new hope.

I started my treatment on Monday, 28th. I had two long days at the hospital as they there monitoring me and making hourly tests for their study. I had a pretty short day on Wednesday and were able to go back home earlier then expected by catching a "Stand By" flight. My mom accompanied me in my travels. We were staying in the Hospitality House right across from hospital. Pretty nice place and certainly very convenient.
Now I have to be back every week for 1 day for the next 6 weeks. On the days I am not in the hospital I have to take provided pills, make logs of all my symptoms, test my blood twice a day for glucose and ketone, and take care of myself. The side -effects of these drugs are pretty favorable: I can break out in a rash and have minor GI issues, but both should be temporary.
In about 6 weeks I will have another CT scan to see if the treatment is working.

Bad news: my pre-trial CT scan showed a lot of disease progression and spreading. My largest tumor in my liver is now 10cm X 10cm. My cortisol level is 8 times higher then normal, that causes high blood pressure for me. I am already beginning to develop osteoporosis.
From the previous chemos I have neuropathy (tingling in hands and feet and sensitivity to cold/heat).

Othervise, I am pretty healthy person and planning to get only better!
All my love, Irina.

Going to Baltimore

2009-09-22T16:25:00.000-07:00

Hi friends,
It's been a long time since I talked to you. I am feeling better these days. The surgery really kicked my butt. After spending 9 hours on operating table surgeons were able to remove my largest tumor from the abdominal, remove large tumor that was wrapping around my aorta (largest vein in your body), spleen, remove several lymph nodes and 16 (sixteen) tumors from my left lung.
My condition was stable during the surgery and I was recovering very well. I was ready to go home 5 days post-surgery just to discover I contracted a C.diff infection. That almost killed me!
I was in the hospital for a month. One complication led to another. I could not eat, I was fed via IV for several weeks.
This is just a short summary. I am glad it is all history now. Now time to move forward with my new treatment. Tomorrow I am going to Baltimore, John Hopkins Cancer Center to be screened for a Phase 1 clinical trial of very promising drug. I hope I will qualify and can participate in it. My treatment options are very limited at this point and I believe this is my best bet. For those who need more info about a trial, here is a link:
http://clinicaltrials.gov/ct2/show/NCT00739453?term=osi906&rank=3
I will keep you posted how it goes. Irina.

Aghhh....

2009-08-29T17:33:00.000-07:00

I am sorry I have not been updating my blog. Since my last post I was in ER and hospitalized twice. I came home yesterday.
My recovery from the surgery has been very difficult. I would like you to give more details then that but I am soooooo tired. I need to rest...
Waiting for the better days to come. Irina.

I am home

2009-08-11T12:28:00.000-07:00

I am home. Too weak to give you more details.

August 8th. Still at the hospital.

2009-08-08T09:20:00.001-07:00

Still at the hospital

2009-07-21T09:02:00.000-07:00

I will give an update once home. Irina.

The surgery is tomorrow

2009-07-09T15:23:00.000-07:00

The original plan was to have surgery on July 16. Today I received a call from the surgeon saying he can do it the next day.
The surgery is scheduled for 5 hours. If everything will go according to plan, I will stay in the hospital for 1 week. The surgery will be performed at Brigham and Women's Hospital by Dr. Richard Swanson.
Keep me in your prayers.
Irina.

Getting ready for surgery

2009-06-17T10:22:00.000-07:00

I am not going to proceed with a current chemo. I decided to take a risk and going for a surgery to remove cancer from my abdominal.
I need to "detox" from the chemo and gain some strength meanwhile. I am still on 2gr of Mitotane. My last level was 11.7

I am happy I was able to go to Paulina's graduation from the kindergarden. The kids were so adorable. She loves her school and made so many friends there in the last year. She can read and write well. It was a good year for her!

Mary-Go-Round

2009-06-10T03:48:00.000-07:00

No chemo this week either. My platelets are too low. I was sent home for another week to recover. I am still taking 2g of Mitotane a day. My last level checked was 7 (should be between 14-20), but I doubt I can take more of this drug. I have extreme fatigue, nausea / vomiting, headaches, back ache, neurophathy... Trying to manage it with a hand-full of medications, that give other side-effects. It's like Mary-Go-Round.
Paulina is graduating kindergarden next week. She is going to have a ceremony wearing a cap and a gown. How fun! Looking forward to this event.

My doctors are puzzled again

2009-06-04T00:47:00.000-07:00

I was scheduled for the next infusion of chemo today, but was sent home because my blood counts are too low. They can't give me any chemo until I recover. I am big time neutropenic (low level of white blood cells). My blood counts were expected to go down, but not so fast and not to that extent. I guess this new regiment was a little to much for my body to take.
I am going back to see my oncologist on Monday to decide how to proceed next. Dose reduction? Modification of the protocol?... Chemo break again, damn it!

I saw a thoracic surgeon last week. Theoretically he can perform surgery to clean up tumors in my abdomen. It would be a pretty invasive surgery (remove my multiple tumors, spleen, part of pancreas, pieces of my liver). His concern is that by the time I recover from the surgery, the cancer will come back again... Or may be not... The risk is high and I would still have to treat lungs afterwards.

I was turned down for the Cyberknife procedure. I can do traditional radiation on my abdominal, but it is like putting a bandaid on the headache - no scientific proof it will help any.

At this point my medical records being reviewed by:
Oncologist Dr. Fojo from NCI;
Cyberknife specialist Dr. Gagnon from Georgetown University Hospital;
Endocrine Surgeon Dr. Yeh from UCLA;
Novalis (radiosurgery system) specialist Dr. Lee from UCLA;
I am going to see local specialist to discuss Radio Frequency Ablation option;
I need to make an appointment to see my endocrinologist (looks like the cancer is starting to secrete cortisol - not good news);
I am seeing psychopharmacologist to help with depression.

But that's not all. I contacted Dr. Foley from the Minnesota Natural Medicine Clinic. He has experience with adrenal cancer and may have"cured" a few people from the disease. Not sure if "cure" word would ever apply to me, but at least he can help me to boost my immune system and/or tolerate my treatment better.

1 year

2009-06-02T08:08:00.001-07:00

Today is 1 year since my surgery. I am a 1 year cancer survivor! I can honestly say, it was the hardest year of my life. Thank you so much to everyone who supported us through these difficult times. It means a lot to us. I still have a long fight ahead of me, but knowing that my family and so many friends are by my side makes it a little easier.

I started a new chemo regiment last Wednesday: gemcitabine, paclitaxel, oxaliplatin and mitotane. This chemo combo has never been tried on my type of cancer before, so it is an experiment. An educated guess, I'd say. I have a lot of "pajama days" these days, but still trying to manage my disease as best I can by sending my medical records all over the country for second, third, fourth... opinions. I am exploring cancer treatment options that are currently not available locally. If someone somewhere else has something promising for me, I'll go there. Not exactly the type of "vacation" I was dreaming about, but you have to do what you have to do.

Rrrrrrr....

2009-05-21T08:19:00.000-07:00

I am angry! My liver biopsy was not performed correctly and only healthy ( non malignant) cells were extracted. TGEN could not perform a genetic profiling on the sample of healthy cells! Before the procedure and signing the consent form, I made it very clear to the surgeon that I would not go through with the biopsy IF they could not guarantee they would be able to extract tumor cells. Now, after three punctures in my liver they managed to completely miss the tumor. How did that happen?! After I calm down a little, I will need to investigate what went wrong.....

I was really hoping to get the report from TGEN by now. It would have been incredibly helpful in planning my further treatment.

Yesterday I found out that my chemo combination is not working. All the tumors increased in size, the largest one in my abdomen is now 7 cm. I am off the treatment while my doctors are deciding what to do next. Plan A, B, C and D failed already. Now my oncologist needs to come up with plan E. I am taking a break from all this madness, will try to clear my head over the weekend and start attacking this evil inside of me again on Tuesday.

Busy week ahead

2009-05-03T17:24:00.000-07:00

I am having a liver biopsy tomorrow. After long discussions with my doctors, several tests and my own research I opted for the procedure. The physicians will try to extract a sample of my tumor from my liver and send a frozen sample of it to T-Gen for molecular profiling. The procedure carries a risk of spreading the disease, but what do I have to lose?! It might open up new treatment options for me. I feel my physicians thought through the procedure very thoroughly. They are going to utilize a new technology called "double tubing" to minimize the risk of spreading.
Keep your fingers crossed it will go well. I am nervous, since my last biopsy resulted in a partially collapsed lung - what a pain in the --- lung!

On Tuesday I have an appointment with a Radiologist to discuss the option of Cyberknife - targeted radiation on my abdominal tumors. Will see what he has to say.

Wednesday I have my usual infusion of Cisplatin - this wonderful drug created by scientists that is suppose to make you all better, but instead makes me so sick.

I will have a few days to regain my energy and then I'm going for another day surgery - removing my IV port. This has to be done to address my blood clot. Hoping it will do a trick. Again, last time they installed the port I ended up in ER the next day, I think due to an allergic reaction to anesthesia.

Wish me best, Irina.

2009-04-26T17:10:00.000-07:00

Last week I was exploring my new neighborhood and saw a sign "Boston Nature Center". I was amazed to discover miles of walking trails, brooks and meadows just half a mile from my home. They have community gardens as well and what a coincidence.. the sign up day to get one was this Saturday! We could not miss the opportunity to have a garden right in the middle of the city. On Saturday we were first in line and we were lucky enough to got a gardening spot to grow our own organic vegetables!
Paulina and my mom spent an entire weekend there "playing in the mud".
I am so excited about my discovery. Boston Nature Center has regular guided walking tours, birds watching tours, family programs and kids camps. The best part of it, I don't have to drive to get there! I am planning to hang out there a lot this summer.

2009-04-22T13:29:00.000-07:00

There was a delay in starting my chemo. My doctors were still deciding on optimal treatment for me. I had my first infusion today. I've got 2 bags of hydration and Cisplatin. I am on 1.5 gram of Mitotane daily. To control my nausea they gave me 8 mg of Zofran and 12 g of Decadron. I decided to cut Decadron to 8g . This is the first time they gave me steroids during chemo and I was a little concerned. Apparently it made a huge difference! I had no side effects. My friend Olga visited me at the hospital, brought me delicious burrito salad I was able to enjoy.

8PM update: OK, nausea and vomiting is back! I called home visiting nurse. I would need her tomorrow for hydration an anti-nausea IV.

2009-04-16T04:38:00.000-07:00

OK. The next treatment plan is in place. I will be starting chemo again on Monday. I started oral chemo drug Mitotane already and I will continue to increase the dose to get to therapeutic level. I will receive weekly dose of Cisplatine.
The best option would to start chemo immediately, but first: my chemo port is clotted and has to come out. This is a day surgery and will be scheduled for next week. I would have to install a "pick line IV" in my arm instead. Second: this Sunday is my birthday. Who wants to get chemo before your birthday? Not me.
Because of the blood clot, I would have to be on the blood thinner medication for the duration on my treatment. I will be giving myself injections of Enoxaparin twice a day. Hoping all these will prevent the clot from moving into my lung or dissolve it all together.
Next, I will be seeing radiologist for evaluation if I radio surgery procedure can be performed on my abdominal mass.
While all these happening, I will try to schedule a biopsy on one of my tumor and send it for molecular profiling review. Since this cancer mutates, the results of molecular profiling can be different from the primary tumor.
Not sure if any of the above makes sense for you, but I will summarize: I will be alright! :)
Irina.

The experiment failed.

2009-04-15T03:59:00.000-07:00

I've got really bad news yesterday. The drug I was taking is not working. More so, it allowed the cancer to grow significantly and spread some more in just 3 weeks. That is very fast! Amazing, but I do not have any signs or symptoms of cancer. This is so frustrating...
I am seeing my oncologist today to see what other treatment options do I have. Also, I am seeing a vascular doctor as I have developed a blood clot were my chemo port was installed. That needs immediate attention as well.
Irina.

2009-04-09T05:37:00.000-07:00

My treatment is going well so far. I will have the preliminary results if the drug is working or not next week. Yuck! I hate scans. They are so stressful. I am trying to take my mind off by enjoying outdoors, climbing trees :), doing some gentle yoga and sleeping a lot. Since we moved to the city I do not see my friends much, I miss them. Please send the prayer and positive energy my way. All I need is a miracle!

2009-04-02T06:57:00.000-07:00

Hi guys,
just wanted to update you I started new experimental treatment last week. Praying to God it will work for me. It it an oral drug I take once a day and it is not suppose to make you sick like a traditional chemo. The drug called XL147 and was developed specifically for tumors lacking PTEN gene. So in theory it should work, but the future will tell.
My pre-trial CT/PET scan indicated no new growth, my liver tumors are gone now (or at least too small to be detected). Unfortunately my abdominal and lung tumors grew in size.
Overall I am feeling OK these days, spending a lot of time with my family.

Paulina's 6 Birthday during my "chemo holiday".

2009-03-12T13:22:00.000-07:00

Ouch... Chemo is ferocious! I never felt so sick in my life.

My doctors thought I physically can't continue with the current chemo regiment and gave me a"chemo holiday". It's been 4 weeks since my last infusion and I am starting to feel better. My blood counts recovered, I am getting my appetite back and I am able to go outside for a walk. I lost so much weight, I have to be careful on a windy day; it might blow me away.

Last weekend I was able to go out to celebrate my daughter's 6 Birthday!

While I am on my chemo holiday, I am trying to get into a trial of a new drug that is suppose to target tumors with a PTEN gene deficiency. I am going to Dana-Farber tomorrow for a screening.

I will be tested from head to toe to see if I am a good candidate for this experiment. Well... I always liked to be the first one. Here we go... this is my chance... may be I will be the first one to get cured from this type of cancer. I can only hope!

For now my immediate goal is to gain some weight. Does anyone have any weight gaining tricks?

Irina.

Spring brings new hope.

2009-02-24T14:10:00.000-08:00

On February 9th Irina completed her 4th round of Italian protocol chemotherapy, and as of 1/28, her blood work showed therapeutic levels of Mitotane. This was remarkable considering that she hadn't taken Mitotane since the beginning of December, and most likely it was combining with the chemo to work against the cancer.

Her last scan January 28th was a good one, with most of the tumors shrinking slightly, some staying roughly the same, and two very small new growths visible.

At this point, her doctors feel it would be a good time to jump off the current chemo protocol and enter a clinical trial with one of the Pi3 kinase inhibitors. These are a very new, cutting edge class of drugs that have shown promise in shutting down tumor growth.

Her tumor genetic and molecular profile has shown a possible susceptibility to some of these newer classes of drugs, and now would be a good time to try them while giving her body a well deserved break from the chemo.

We hope she will qualify for one of these clinical trails at Dana-Farber, and we certainly hope that the technology is successful. This would give Irina a mental and physical vacation from the cancer and allow us to focus on some of the other promising cancer technologies like dendritic cell therapy, toricel and IGF inhibitor clinical trials, possible de-bulking, and other technologies that can physically destroy tumor tissue.

As of right now, our clear focus will be on getting into one of the clinical trials and hoping the Doctors and researchers at Dana-Farber can work their magic.

Thank you Dr. Oh and Dr. Elfiky of Dana -Farber
Your hard work, kindness and professionalism have given us hope.

We will keep you all updated on where we go from here.

All our love,

Len and Irina

CT scan is comming next week.

2009-01-24T04:39:00.000-08:00

I completed my 3rd round of chemo cycle. I will not go into too much details on how it went, but at least this time I did not end up in the hospital. What a bonus!
My infusion protocol was changed this time arround as well as my other medications, so I was able to tolerate it a little bit better. I have a CT scan coming on Monday to see what progress the chemo has made on my cancer. I am very anxious about the results. Deep breath in.. deep breath out, Irina.

A few months back I asked my doctor to perform a molecular profiling on my tumor. It is sort of a new technology in cancer treatment. I researched online and found a company in Arizona that works with Adrenal Cancer. It took some time for the doctors to get it done, but finally I've got a report back. My tumor is completely missing a gene called pten. The gene is not defective; it is not mutated, it's missing! Where did it go?
Interesting....
Now that we have this information, the next step will be trying to figure out how to use it. Is it reversible, is it treatable? I have a lot of further research to do and ask doctors a lot of questions....

While I was busy all month concentrating on my own health, the rest of the family had pretty rough time as well. My father-in-law had open heart surgery. My husband was juggling work, taking Paulina back and forth to school, taking me to the appointments, visiting his dad....
My dad was hospitalized as well. likely all he needs is a small operation on his stomach. However it still worries me. Thank God we have my mom staying with us, I don't know how we would do without her.

More horror stories?... Sure! My husband and 2 of his best friends went to celebrate their birthdays (all 5 days apart). One of his friends had a heart attack right in the bar in front of my husband! Instead of getting few beers and a dinner, all 3 of them spent a night in the emergency room. Come-on! He is only 44 and leads a very healthy life style! Again, thank God the ambulance came quickly and he is going to be all right.

BTW, I am getting quite religious these days. Pretty uncommon for a person growing up in the communist country.

I hear every day more and more people get diagnosed with cancer. Is it an epidemic or what? How about we stop Wars and redirect those funds into Cancer research!?

I am very glad we have a new, forward thinking President that hopefully will put our best interests first . I wish him luck.

Irina.

Happy New Year!

2008-12-31T09:14:00.000-08:00

We are all hoping 2009 will be better than 2008.

So far there has been some good news with Irina's treatment, and we hope she will be able to continue the regiment and follow it through to completion. Her biggest struggles these days are eating and overall energy level, along with mental outlook. She struggles with depression because she can't do anything close to what she used to, and because so many people don't survive this type of cancer.

She needs words of encouragement and re-assurance from friends and family to help her through this, she can't do it alone. We have found a girl that has a very similar case to Irina's, and she has fought the cancer and has been cancer free for almost three years, so we know there is hope. The best help anyone can give Irina right now is to talk to her, come visit her, and help her keep her outlook positive as she moves forward with her treatment.

We know there is a light at the end of the tunnel, but we need to hold her hand and walk with her through the darkest part to get there.

I would like to thank everyone that has helped her through this part of the Journey, words cannot describe our gratitude. I humbly ask you all to stay with us through this and keep saying prayers.

Good luck and 2009 and happy new year.

All our love,

Irina and Len Curtin

Happy Holidays!

2008-12-23T05:48:00.000-08:00

I still have hard time recovering from last round of chemo. I've been pretty much bedridden for the last 3 weeks. If someone would would tell me: "Ok, Irina, we guarantee you are going to live another 10 years, but that's how you are going to feel for the rest of your life". My answer would be" "No, thanks!"

I've had head MRI done yesterday looking for tumors in my brain. Hmmm... Do I want to know the results before Christmas?

My next round of chemo is scheduled for January 2nd. I need to hurry up and recover before it, otherwise my infusions will be canceled and then what?

I've never been so depressed before in my life. I am sure it contributes to me not feeling well, but I can't help it...

It's not the destination, it's the journey.

2008-12-11T15:27:00.000-08:00

My second round of "herbal tea" did not go so well. It all started with the port installation. The next day, on Thanksgiving, I ended up in the Emergency Room due to what appears to have been an allergic reaction to the anesthesia I had the day before.
I managed to get back home on time for Thanksgiving dinner and said Grace in front of a plain bowl rice. That's all my stomach could tolerate that night.
I felt pretty lousy the rest of the weekend.
The following Monday I started next round of "herbal tea" infusions. By Wednesday I was in really tough shape, so mt Oncologist decided to take me off chemo completely and put me in the hospital for the next five days.

After being in the hospital I feel much better: a blood transfusion, hydration and anti-nausea IVs defiantly helped.
The other positive note, while in the hospital, they did an emergency CT scan to see the progression of my cancer and they seem to think the chemo is working! There are no new growths and existing tumors got smaller in size.
Next week I am going to see my Oncologist to confirm these results and how to proceed further with my treatment plan.

My daughter really enjoyed visiting me at the hospital. (Something new for 5 y.o.:) She asked the nurse many questions "What's that? What does that do?" The nurse was so nice performing complete check of her vital signs describing each step in details. Paulina was fascinated!

I feel like I am learning a new profession myself. There is so much to remember and so much coordination required for the job! Since I do not rely on my "chemo brain" these days any more, I am doing a good job of making notes. I feel like I am in college again. (I will let you know what Grade will I get by the end of the semester:).

Letter from my friend.

2008-12-10T05:51:00.000-08:00

Hello,
I wanted to take this opportunity and express my gratitude to you all for donations.

The funds that Irina and her family have received are being a tremendous help with the out of pocket co-pays and medications, not covered by health insurance.
Irina and her family are deeply touched by your support, which is the most valuable thing of all. Your friendship, word of encouragement and prayers are the things that lift her spirit up, give her the strength she needs to keep fighting the disease.

Have a happy Thanksgiving and God bless you all,

Tatiana, Irina's friend of many years.

Today is our wedding anniversary

2008-11-26T02:45:00.000-08:00

Today is our wedding anniversary. 9 years! I have to admit, until having cancer I never realized how much I love my husband. How smart I was marrying him 9 years ago!
Yesterday he made my day. He said "I never thought bald woman can be attractive, but it really is!"
I also have got couple of complements from friends saying I look like Sinead O' Connor, that she is beautiful and have a wonderful singing voice. (Ohh…my friends are soooo sweet. They are complementing my new look, knowing I will feel better about myself".)

Ok, ok… Enough "patting myself on the back"… However, doctors and other people told me that this is a time of my life when everything should be about "I, me and myself".

Wow! 9 years! Time flies! Sweetie, you can't imaging how much I love you!

I haven't been wearing my engagement and wedding rings for several years now. Actually since our daughter was born. At first, my diamond would scratch her gentle skin and I would take the ring off. Then my wedding ring would annoy me at the gym. It was on the way of putting my kickboxing gloves or trying not to lose it while making laps in the pool. Several friends would ask me suspiciously:" Why I am not wearing my wedding ring?" I told them my story. It probably sounded to them like a lame excuse. Then one day I realized exactly why I am not wearing it! One lady at the gym did exactly what I was afraid of, she lost her engagement ring! I overheard her conversation in the locker room; then she was telling her story to a gym manager requesting to drain the pool in order to find the ring. She was not sure where exactly she lost it, but the swimming pool was her first option. When I was ready to leave, I saw the same lady anxiously walking around the gym parking lot looking for something. She was wearing flip-flops, bathing suit and a swim cap! :) (Remember, it was quite cold outside. Jacket cold!). I would have thought she is a psychiatric patient if I wouldn't know what was just happened!
I felt bad for her, I hope she found it.
This is a reason why I don't like expensive jewelry or expensive stuff in general. It's not worth it! And after watching the movie "Blood diamonds" I became rather an anti-diamond person.

Today is also the day I am installing a chemo port. It is a device inserted under the skin around your chest area to get access to a large vein for the infusions and blood tests. It is a surgical procedure (supposedly a minor one). It will be visible and will stay there through my cancer battle. I am trying to "trick my mind" thinking: "It's just like getting a tattoo… I can then decorate it with a temporary tattoo sticker according to the season. Pumpkins for Halloween, Cornucopia for Thanksgiving, Rain Dear for Christmas... So, I am looking forward to the procedure. :)

I've been reading a lot of inspirational books lately. My favorite one is "The Peaceful Warrior" by Dan Millman. It was recommended to me by my dearest friends from the gym called "Warriors Way". I miss that place! I decided to call myself a Cancer Warrior and I am going to fight! I am looking forward to win the competition and become a part of the Warriors Way community again with a new wisdom and strength!

My daughter is giving me a haircut!

2008-11-21T14:08:00.000-08:00

I had nothing to lose... except my hair! So I intrusted myself to my 5 y.o. daughter. She had so much fun giving me a new style! :)

Definition of evil: adrenal cancer!

2008-11-16T05:01:00.000-08:00

It hides... it mutates... it spreads rapidly... There is rarely a good news with this disease.

It categorized as an "orphan cancer". The definition of "orphan cancer": A disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.

So, the patient gets this disease and nobody is interested to research it simply because it's not profitable!? It sounds so wrong....

Considering all of the above, I learned to take even tiny good news about my desease as a huge success. My doctor called me Friday night to report on my latest blood work results. He said, my liver function is improving very nicely and my blood cells counts "look beautiful".

My white blood counts didn't drop, which indicates my immune system is still strong enough to deal with cancer.

This news made my weekend and put a huge smile on my face! :)

Take a moment, redefine yourself

2008-11-12T15:49:00.000-08:00

I could not resist to share this movie with you:

www.findingjoymovie.com

Herbal Tea Time

2008-11-06T06:50:00.000-08:00

Today is the 4th day of my infusion. I made an agreement with my nurse to call "chemo" "herbal tea". Susanne (my nurse) will come over and say: "Irina, it's herbal tea time!":) It makes me laugh.
My family and friends are very supportive. My husband has been great, it's like having a honeymoon all over again! (I call him "my cabana boy":). My mom is staying with us, helping us any way she can. Paulina is praying for me every night. We put her in Parochial school this year and I think it helps her to understand the situation a lot better.
I've got a Platinum blond wig. The whole family had fun with it. Even my husband tried it on, he looked like a hippy. Paulina looks like a Barbie doll in it. The wig is really warm too; great for winter. My hair will fall out in about 3 weeks. Amazing, but I do not care.... I do not care about many other things in life I used to be concerned about. I honestly can tell my whole personality changed. I don't act the same, I don't think the same. I used to plan my life at least 5 years ahead. (For example, I knew I was going to Sochi Winter Olympics in 2014. :) Now, it is one day at a time. Who knows, I still might be there!

After today I will have a 24 day break to digest my "herbal tea". I will be going back to the hospital for weekly blood tests. If everything looks OK, I will start my 2nd round of "herbal infusion" on December 1st.

Life is beautiful! Cancer sucks! Irina.

Halloween Time!

2008-11-01T05:33:00.000-07:00

I will be starting new chemo regiment next Monday. It is infusion over 4 days x 4 different drugs. I'll be treated in Dana-Farber.

Time to shop for a wig! Blond, redhead, brunette? :)
I saw the musical "Legally blond" the other night, so I'll go with blond. It matches my personality the best. :)

Over the last few days I've had fun with my daughter. It's halloween time! Look, she is an adorable witch!

Well, my story makes great spooky Halloween story! Per recent CT scan, my cancer is in my lung, liver, retroperitoneum, omentum and possibly bones. The new nodule in my abdomen grew 4.5 x 3.4 cm in just 2 months.

My family and friends are very supportive, I feel really blessed. Last night we had a talk with my daughter for the first time on what is happening. She understood. She said she will pray for me. I also have a backpack filled with toys and material to help explain to a 5 year- old what cancer is all about. I'll use it in the next few days when I feel like I can emotionally handle it.

I am declaring a war againt cancer! I am going to fight!

Having a bad day? Think again... It can be worse tomorrrow.

2008-10-27T07:32:00.000-07:00

The result of my CT scan was available Friday night. I asked the doctor to wait to share the results with me on Monday, so I can spend some family time not thinking about it.
My doctor called me Sunday night at 10PM. (was not a good sign). The fist question he asked: "Is Len with you?" (now I knew something is really bad)....
In the last 2 months my cancer grew aggressively. My lung nodules got larger and in addition cancer spread to my liver, pelvic and abdominal area. The tumors are quite large, with indicates how agressive this cancer. Something has to be done about it as soon as possible and prognoses are getting worse by a day.
I am ready for anything: surgery, agresive chemo, experemental drugs. With all the support I get from my friends and family I know I can keep my spirit up, no matter what!

Results of my blood work

2008-10-21T07:05:00.000-07:00

Had a discussion with my doctor today. Cortisol levels are slightly up, most likely because my body is not metabolizing Dexamethasone efficiently enough, and my existing Adrenal gland is still producing Cortisol at levels higher than desired. He also said that Low dose Naltrexone is not an appropriate adjuvent treatment for my lung mets because it stimulates a growth factor for ACC tumors.

He sent paraffin embedded tumor tissue to TGEN for analysis as no frozen tissue was available, however, he recommended sending fresh tissue from the lung mets when it is removed to see if if has genetically mutated. Comparing these two tissue samples could have potential benefits for future treatment as ACC tumors are known to genetically mutate as they spread from the tumor of origin.

The doctor recommended to immediately and most likely on a temporary basis, raise my Dexametasone prescription from 1.5 mg per day to 3.0 mg per day.

I am going to have next CT scan this coming Friday to see the progression of my cancer. I am keeping my fingers crossed.

Decisions, decisions.....

2008-10-13T07:42:00.000-07:00

Last week I was doing some more blood work and checking some things out. My cortisol level is high again for some reason; I have elevated liver enzymes and my cholesterol level is skyrocking due to medication I am taking.

I will be meeting with Oncologists at Dana-Farber this week. At this point my Doctors seem willing to throw just about the entire kitchen sink at this thing provided that I can handle it physically.

I have had a lot of decisions as to direction to go with treatment, and for now it seems like maybe surgery, Sir-spheres, Mitotane, LDN, maybe Abraxane, recommendation from T-Gen, anything Dana-Farber can come up with, and lots of help from above.

Hoping for something spectacular.
Irina.

I refuse to accept I have cancer.

2008-10-06T07:57:00.000-07:00

On Friday May 16, 2008 I was diagnosed with cancer. My first impression was: me? cancer? what is an adrenal gland? is it curable?....

Unfortunately, there is no cure and I need to learn how to “live with cancer”.

A 14 cm tumor, adrenal gland, kidney and rib were removed on 2nd of June. I had successful surgery and everything looked promising. It looked as if maybe "my cancer was gone". But not for long....

On my first post surgery CT scan, radiologist noticed a spot on my lung. My doctor ordered a biopsy. My cancer metastased to my lungs; putting me in Stage IV of the disease.

As of today I am not sure what my next step of treatment is. Little is known about Adrenal Cancer to this point and presently there is no known cure. I am researching every possible option, treatment plans, experimental medications, etc. I have recieved second opinions and have spoken to patients with the same diagnose to decide what might work for me. I have always been able to overcome adversities in my life and now, I have to fight the most difficult battle.

New Website!

2008-10-04T17:52:00.001-07:00

Please check back for new updates on Irina's progress as this is the new home for them.