Update from George

We met with Dr. Myrna Rosenfeld who is the Division Chief of Neuro-Oncology a the University of Pennsylvania Hospital. The purpose of this visit was to get a second opinion on Donna's condition and treatment plan.

Dr Rosenfeld went through the various conditions and treatments plans that might be applicable depending on specific circumstances. The general result is that there is no additional or alternative treatment that Dr. Rosenfeld could recommend other than that which is currently being done by Dr Ostrovsky. The location and identification of a primary cancer is what needs to be further pursued. There is a lesion on one of her lungs, but its very small size and placement makes a definitive diagnosis difficult. Cancer of the bone or spine may also be a suspected primary cancer, however, there has been no indications of this and further scans, biopsies, and other tests will need to be done.

Additional Radiation Treatments: Dr Rosenfeld explained that it is not feasible to repeat radiation to the brain because of the damage that additional dose of
radiation would do. Radiation might be used for a very small and localized lesion and the beam would have to be very precisely placed.

Chemotherapy: is ineffective on brain lesions and can be administered only after identifying and locating the primary cancer.

Clinical Trials: There are no clinical trials underway that would be applicable to Donna's specific condition. Also, the lack of an identification of a primary cancer would preclude participation in clinical trial.

We also learned that the use of steroids in reducing the swelling in Donna's brain is a double-edged sword. Although the steroid Decadron is necessary to keep the intracranial swelling down, it also had the effect of reducing the function of major muscle groups which may be the cause of Donna's tiredness, loss of energy, and loss of mobility.It was suggested that a prolonged and very granular schedule for reducing steroid use be tried. We had tried this previously but perhaps the time was not long enough and the reduction was too much within a short time. We will discuss this with Dr. Ostrovsky during our next visit.

So the basic result is that we will continue with the current treatment and monitoring while continuing to identify the primary cause of the brain cancer.

July 1st Dr appt

Yesterday I went with mom and George to visit Dr. O. It wasn't a particularly eventful appointment. He cut back some of her meds that seemed to be duplicates from various doctors. I asked a lot of questions about treatment options, why surgery isn't an option, where do we go from here, etc... and he basically said there is nothing to do. Come back in three months and see where we're at.

I'd like to get a second opinion on possible treatments, so we're trying to find another Dr and get an appointment for next week if possible. Will let you know if that happens.


In the meantime, we've been just hanging around the house (when I'm not working). I've been cooking dinner and encouraging her to eat more and more nutritious foods. I also would like for her to get out and walk the dog etc because she's getting virtually no exercise.

We'd like to take a day trip to the zoo, hopefully tomorrow if she feels up to it. Will take pictures!
-ashley

Dr. Ostrovsky office visit

Dr. Ostrovsky (main oncologist) visit.

Info from George:

The blood test that was done last week shows no signs of antibodies that would indicate any cancer in the chest area.

The lesions on the brain have not grown or may even be very slightly smaller. Dr. O characterized this as being "stable". Both these results were considered "good news" by the Dr. There is still some swelling present in her brain.
Dr. O said that the effects of the radiation treatment can last as long as 2 -3 months and hopefully the swelling will go down. For now, Decadron is still being prescribed to reduce the swelling, The negative effects of this steroid
is weakness in the upper legs and balance problems.

The small spot in Donna's chest has reduced from 2.3 x 1.6 cm to 1.6 x 1.1cm which is also good. There were no other indications of any other problems in her chest area according to the results of the CT scan.

Additional radiation for brain tumors is not normally done so there will be no additional radiation therapies. The only time this is done is if there is a single lesion very close to the surface. Donna has multiple small lesions.

Due to the negative results of the tests and the question of what the spot on Donna's lung is, Dr. Ostrovsky's decision is to not do chemotherapy at this time.

We have scheduled another appointment for July 1.

As for me, I will be flying back June 18th to visit through July 14th. I definitely will be at the July 1st doctors appointment asking lots of nosey questions :)

Update from George...

We went to see Dr Schwartzmann at Drexel University Hospitalon Monday. The purpose of the appointment was to coordinate and consult Dr Schwartzmann concerning treatment for RSD inconjunction with the brain tumor treatments.Dr Schwartzmann recommended that we delay any future ketamine treatments until we get the results of the recentreadiation treatments and prognosis. This is due to Donna's heart condition which can be stressed somewhat by the radiation treatment(s). Ketamine treatment also can place stress on th heart. Dr. Schwartzmann also indicated that he and his team are investigating a new drug treatment for RSD based on

chemicals found in marijuana which will reduce pain without affecting brain function.

Appointment with the radiation oncologist is inthe first week of June.

When I hear of the results from CAT scan I will post them asap.

An update from George...

George emailed me a thorough update, so here it is:

Donna had the bronchoscopy done on Monday. There procedure went fine with no lasting side effects of other symptoms. We went to Dr. Ostrovsky (Oncologist) yesterday for the results: The pulmonary specialist was not able to find any lesions or tumors within the lungs. A needle biopsy was taken during the procedure and the pathology results for that tissue sample were negative. No cancer. Dr Ostrovsky characterized the results as "completely negative"

So that's good news.

We will see Dr. O again in about three weeks. He changed her medication to include the Decadron
again as Donna started to have bad headaches again and her balance was getting worse. We had started to reduce the Decadron over the past few weeks because the other oncologist thought it might be causing the swelling in her ankles. It is a steroid. However, as Dr. O noted, her headaches and
balance issues and partial aphasia could be due to the lesions in her brain swelling again, hence we will start the Decadron again.

Due to all the different Doctors trying to ease her symptoms with medications, in the future we will coordinate all medications through Dr. Ostrovsky. He reviewed all her medications (anxiety, pain, sleeping, stomach, swelling, depression, etc.) and said that none of them should have any negative interactions with the others.

As for the RSD, Dr O suggested she see Dr. Dolan (Pain Doctor) about resuming nerve block injections for the RSD pain. We also have scheduled a visit with Dr. Schwartzmann next week to update him on all that has gone on since the completion of the initial Ketamine treatments and to discuss coordination of the RSD treatments and the cancer treatments,

We will see Dr. Chon (radiology oncologist) in early June to get a status on the results of the radiation to look for a reduction in the size of the lesions. The radiation takes ~ 40 days to take full effect.

So, at this point, we have no more tests or procedures scheduled for the next few weeks.
We got a walker so she can move around outside and take the dog out. It has a seat on it so she can sit down if she gets tired. Seems to work OK as she went outside yesterday several times with the dog and talked to the neighbors.

Radiation is complete!

Radiation was *supposed* to be over last Friday, but due to an problem with the machine it was pushed back a few days. So yesterday was the final day of radiation. Mom will go back for a cat scan in June to see how the radiation has helped. As a side effect of the radiation mom began to loser her hair, so she decided to shave it all off.. so don't be surprised when you see her :)

Thanks again so much to everyone for helping out with rides to and from radiation and other errands. I will be coming home sometime in mid-June for about 4 weeks so hopefully I'll be of some help then.

Tomorrow mom has an appointment with a pulmonary specialist to discuss the abnormality found in the chest area on the PET scan, and to schedule a bronchioscopy. Will let you know of any more information when I have it.

Newest info, and calendar update

First and foremost it turns out that there are only 10 radiation treatments, not 14 so the last treatment will be this Friday.

Monday mom and George went to the oncologist to discuss the PET scan and the progress she's made. I'll quote from George:

We went to the Oncologist today for the results of the PET Scan. He cannot definitively say that the abnormality is a cancer tumor. Dr. Ostrovsky has asked for a bronchioscopy to be done. We have an appointment with a pulmonary specilaist on Thursday after which the oricedure wil be scheduled. It is not a dangerous procedure and is done on an outpatient basis. Dr. Ostrovsky expressed that he is not at all sure if the growth in her lung is cancer, so there is still doubt that that is what it is.

June 3rd she'll go back for another CAT scan to see how the radiation has helped (hopefully), as it generally takes 6 weeks to see results. She will also be having a biopsy of some spots on her skin just to make sure that there is no cancer there as well. Over the next couple weeks, she will be slowly reducing her steroid medication (which controls the swelling in her brain).

One more quote from George on her progress:

I beleive that your Mom's headaches have been reduced in severity and incidence and she seems more awake and responsive, so we hope that
the radiation has stopped the growth and reduced some of the pressure in her brain.

Thanks again so much to everyone for their helpfulness, love and support :)

First week of radiation is complete!

After finishing five full days of radiation, things seem to be going well. Tomorrow mom will be going to see her main oncologist, Dr. Ostrovsky to discuss the PET scan results and progress of the radiation.

The good news is the radiation treatments are quick and painless, but unfortunately mom has begun to lose some of her hair from the treatments. She's planning on a getting a short cut to make it easier to maintain as she continues to lose hair throughout the remaining 9 treatments. Thanks so much to Mary for taking her to 4 of the 5 treatments, and to everyone else for signing up on the calendar to help out over the upcoming two weeks.

Mom is also trying to maintain a nutritious diet full of protein and fruits and veggies, which is a huge step away from her normal diet of Hershey bars and hoho's :) but I step in the right direction. Every time I've spoken with her she seems in good spirits and completely lucid which is also great.

Hopefully I'll have some more info tomorrow after the Dr's appointment so check back for the latest :)

PET scan results

On Wednesday the 9th mom had a PET scan to make absolutely sure there was no other cancer in her body besides the brain. Mom and George picked up the results, but they have not yet been explained by the doctor. There was one finding besides the brain, explained as:

Findings: Within the thorax, there is a 2.5 cm FDG avid hypermetabolic focus seen the left hilar region. This appears to represent a metastatic lymph node. No other FDG avid lesions are seen within the thorax, neck, abdomen, or pelvis.

I have no idea if this means if it is cancerous or some other anomaly, but will be sure to let you know when we have further information on it.

Everything else looked clean, as explained here:

Normal cardiac, hepatic, splenic, urinary tract, bowel and bone marrow activity is seen. Incidental CT findings include evidence of a previous right parietal craniotomy and right atrial and right ventricular pacemaker leads inserted via the left subclavian vein.

Lotsa Helping Hands

LotsaHelpingHands is a great tool offered by livestrong.org that allows me to create a network of friends that are able to help with various tasks related to treatment. If you'd like to sign up to view the calendar and help out go HERE.

Mom will be having fourteen radiation treatments over the next few weeks and will be needing rides to and from the hospital for these, so check out the calendar for more info on dates and times when we may need some help. Thanks so very much :)

First Post

This blog will serve as way to share the latest info for my mom Donna as she begins treatment for brain cancer.

To get started here's a quick background I stole from my own blog post:

I'm not sure there are any scarier words you can hear than 'brain cancer'. My mom went to see her doctor for blurry vision, and he recommended a CAT scan. With the results showing numerous lesions in her brain, she had a biopsy that confirmed cancer. I really couldn't have been more shocked, and got the first flight I could back home to Pennsylvania.

After spending a week at home with my family I have many more answers. It turns out my mom has aednocarcinoma, which is a cancer that is usually found in the lungs that would then metastasize to the brain. After multiple full body CAT scans, there is no sign of cancer anywhere else in her body including the lungs (thank God), but makes for a very unusual case.

Of course the control freak that I am :) I stayed to visit with the oncologist to make sure he got my seal of approval, and researched her other doctors to make sure they were the best in their field.

Her oncologist believes this may have started as long ago as 4 years, which means the cancer is slow growing (a good thing!!) and not very aggressive (another good thing). Because of the way the cancer formed, she is stage 4 (not such a good thing). She will begin radiation as soon as possible, and after seeing how the cancer reacts to this the doctors will make further decisions. Chemotherapy is not an option for her type of cancer because of a barrier between the brain and the rest of the blood system.

I'll update with any new information as I have any. Also be sure to check out her LotsaHelpingHands calendar to see if you can help with car rides to and from treatment, I know we all appreciate any help you can give! If you want to sign up for notifications when the calendar is updated, email me at ashley@ashleybartoletti.com -- Thanks in advance.