Jen from California - Dx 2009

[jenhy168]

Dear Jen,
I am so sorry about your recent headache concerns, and Hope that your symptoms are just stress related or from another benign easily treatable cause. However, to err on the side of caution I strongly encourge you to heed Amanda's hard earned advice and schedule a brain MRI as soon as possible. When Brittany was diagnosed with brain mets in 2004, she had been having morning headaches which seemed to dissipate and resolve during the day. We were later told by her neurologist that morning headaches are a classic symptom of brain tumors. I certainly don't want to alarm you, but it is better to be safe than sorry in being vigilant with your scans, and any symptoms should not be ignored and immediately discussed with your oncologist. Also, be aware of any other possible symptoms such as dizziness, vision problems, numbness in your extremities, loss of balance, etc. Do not allow your oncologist to tell you to just 'wait and see what happens" before ordering the scan, and don't accept having just a brain CT as they are proven to be inadequate in finding ASPS brain mets at their smallest most treatable size. Take care dear Jen and keep the Board updated as you are able.
With special caring concern, healing wishes, and continued Hope,
Bonni

Hi Bonnie,

Did Brittany have any other symptoms to her brain mets? Was her headache pain minor or severe?

Thanks~~

[D.ap]

Hi Jen

I've just tuned in on the discussion
What I see is that you need to talk to your oncologist and let the team know of your headache as I don't feel its unreasonable to have a look see as it has been 6 months?
The brain tumors as I understand CAN grow pretty fast and can or cannot create sysmtoms?
What's your largest lung tumor at this time?
Ours is 2.1 cm out of the 4 we are following. However the other 3 are entering the CMs?

I am so sorry that the headache had to make you feel afraid
Let us know what the doctor says

Love
Us all

[jenhy168]

Hi Debbie,

Actually I checked again, and my last brain MRI with contrast scan was done around August 20th. So that is fairly recent. But I don't put it past radiologists to "miss" something and think that everything is clear.

I think one of the largest nodules I have is 18MM.

[D.ap]

Hi Jen
Thanks for your response
18 mm or 1.8 cm is still getting up there but manageable ?
You bet that there can be a miissed area
Are all your scans performed in one area? By the same radiologist ?
Debbie

[Bonni Hess]

Hello again dear Jen,
Regarding your question about Brittany's brain met symptoms, her morning headaches were accompanied by dizziness, visiual disturbances, extremity numbness and weakness, etc. It is somewhat relieving that you had a brain MRI with contrast that appeared to be clear as recently as August, but given the nature of ASPS brain mets to develop and grow more rapidly than mets in other parts of the body, I still encourage you to discuss your morning headaches and concerns with your oncologist and to explore the possibility of having a review of your August brain MRI done as well as the scheduling of another brain MRI to ensure that nothing was missed in the August scan. Of course there are many other causes for headaches than brain tumors including stress, fatigue, dental problems, the flu, systemic treatments etc. but be very aware of any other symptoms that you may be having in addition to the morning headaches and report these immediately to your oncologist if it is decided to not proceed with anther brain MRI at this time.
Were you accepted into the Clinical Trial that you were considering when you posted in July, and if so, have you begun the Trial yet, and if not, are you currrently receiving any other kind of treatment?
I am holding very tight to Hope that your morning headaches are completely unrelated to ASPS and from some other benign cause, and I will be anxiously awaiting your next update. Take care and keep the Board updated as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Hi Bonni,

All I have are faint dull headaches in the morning and sometimes maybe during the day, but usually they dissipate after a few hours. No dizziness, vision problems, etc. But I have noticed at the same time for the past couple weeks that my back teeth hurt, probably due to clenching at night. So perhaps these are tension headaches due to nighttime clenching. Or at least this is what I hope these headaches are caused by.

Either way, I await my doctor's authorization of the brain mri. Not sure if my insurance will approve two brain MRI's so close together, since my last one is 2 mos ago.

Regarding the clinical trial, I haven't requested the tumor slides from USC to submit to the trial to see if I'm fully eligible for the trial or not. I'm still taking 25mg of Sutent per day. My last chest CT was in mid August and it showed stability for my lung mets. So my next chest CT will be in November. I'm not taking massive action with this clinical trial just yet because 1) it's chemo and involves a transfusion & it will be very hard on my body, and 2) I want to wait until I know Sutent doesn't work before I seriously consider whether I want to pursue this clinical trial.

I've been on Sutent for about 8 mos, and hopefully I continue to be stable on this drug. *fingers crossed*

[Olga]

Jen, your recent brain scan was only done in Aug and it was the best type - MRI with the contrast - so the chances there is a brain met are really low. May be you just ask your drs if they can to redo the review or to ask some other radiologist to re-read the scan - sometimes it is done so then they can compare the viewing impression between them.
Your plan of staying on a Sutent as long as it works is a good one.

[Bonni Hess]

Hello again dear Jen and thank you for the additional information. Your lack of any other symptoms thus far rather than faint headaches, combined with the recentness of your clear brain MRI in Auguast certainly don't seem to be indicative of a brain met, and I agree with Olga regarding both the brain MRI and your continued use of Sutent since the Sutent thankfully seems to be providing continued disease stabilization. Nightime teeth clenching could definitely cause tension headaches so perhaps you should schedule an appointment with your dentist to better evaluate the situation. You may want to communicate with Amanda because she was experiencing what she assumed was dental pain, but then was heartbreakingly diagnosed with a jaw bone met so perhaps a jaw scan might be appropriate if the August brain MRI did not show/evaluate this area. Insurance coverage for another brain MRI in a two month period may definitely be a problem unless it is warranted by symptoms and felt necessary by the oncologist, since Brittany's insurance only allows brain MRI's every three months as long as she is not symptomatic and the previous scans have been stable.
I am so grateful for your chest met stability and my very best wishes will be with you for continued good scan results from your November chest CT. Hopefully your November chest CT will also include your pelvic and abdominal area as it is very important to regularly monitor those areas with scans in addition to the chest area.
With more special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello Jen <3
Posting fast iPad dis at 5% lol

Are you afraid it is a brain met?
If so make them do it so you can either deal with it or do a huge snoopy dance!
You already are dealing with stuff you don't need that stress...

My 2.3 met in my brain they are telling me was new but no matter. If it was new Jen the faint pressure in head an I already have jaw pain was there so I don't know if that us a sign.

Just do it you will miss out on rfa an stuff an have a surgery instead.
Again you don't need the
Omg do I have a met
Feeling you have enough on you

Remember in in LA if you ever need me to meet for coffee or call an vent. <3

Hug your dog an think and make your mind up

[jenhy168]

Hi guys,

First off, makes me so so sad to think about Amanda. :***( She was such a wonderful person and will definitely be missed. <3 <3

Update:
Brain MRI from last Nov was clear. Still on Sutent 25mg. Chest CT scan from March 2015 showed slight growth in size of current nodules. No increase in number of nodules (however who knows if that's really accurate since i have an innumerable amount of nodules). If my next scan in June continues to show growth then I will stop Sutent.

Has anyone heard of the clinical trial in Pittsburgh, PA? (A Phase II Study of the Anti-PD1 Antibody Pembrolizumab (MK-3475) in Patients With Advanced Sarcomas) - see link below

https://clinicaltrials.gov/ct2/show/NCT02301039

I think it opened in March 2015. Wondering if this is worth a try? I'm basically out of systemic drug options since I've tried most of them throughout the years.

Thanks all for all the support and advice~
Jen

[Olga]

Hi Jen, thank you for an update. It is good to hear that your brain scan is good. Yes it is very hard for us to loose Amanda...

I just looked at the clinical trial you posted and see that there are two arms they enroll - soft tissue and bone sarcoma, and in the soft tissue sarcoma they say:
Patients with the following types of soft tissue sarcoma: leiomyosarcoma, poorly differentiated/de-differentiated liposarcoma, high grade pleomorphic undifferentiated sarcoma/MFH, MPNST and synovial sarcoma) - does not look like they are enrolling ASPS at all.
What about cediranib trial?

[jenhy168]

Hi Olga,

Thank you for your response. Good catch on the eligibility. I already emailed the trial contact person inquiring about it, so I guess they can confirm whether ASPS people can participate.

I can't do cediranib because I've already taken a drug that makes me ineligible for it.

[jenhy168]

Where can I find Dr. Rolle's most up to date contact info and address?

[Olga]

http://www.cureasps.org/forum/viewtopic.php?f=51&t=865

Is cediranib only trial closed ? (not the cediranib versus sunitinib)
https://clinicaltrials.gov/ct2/show/NCT00942877

[D.ap]

Hi Olga,

Thank you for your response. Good catch on the eligibility. I already emailed the trial contact person inquiring about it, so I guess they can confirm whether ASPS people can participate.

I can't do cediranib because I've already taken a drug that makes me ineligible for it.

HI Jen,

Its really good to hear from you.
The clinical trial that Olga posted above of cedirinib phase II doesn't appear to exclude people who taken pazo like you had?

I've been reading on a article of using Pembrolizumab for advanced lung cancers.
I guess last October Pembrolizumab was approved for melanoma .

http://www.medicalnewstoday.com/articles/292589.php

I am so sad of Amanda's passing too.
Hugs to you
Love
Debbie