Jen from California - Dx 2009

[D.ap]

Hi Jen

Thinking of you often.

Thanks for the response.

Can you take care of the most vital offending tumors with IMRT then have the Dr Rolle treatement on the out lying tumors ?
Eliminating the hundreds of existing tumor?

Just a thought.

How is the Opdivo treatment treating you?


We are doing fine here. Just enjoying wellness at the moment
Much love
Debbie

[jenhy168]

Opdivo has minimal side effects, mostly itching and tiredness.

Debbie, per Dr Rolle, I'm not eligible for his surgery.

Tomorrow i have IMRT CT scan planning.

Hope everyone had a nice labor day weekend~

[D.ap]

Jen

I am glad to hear of the minimal side effects with opdivo
Scans are going to be performed soon?

Does Dr Rolle see any possibility of future treatments ?
I hope your IMRT appointment brought some answers and goals
Write when you can
Love
Debbie

[jenhy168]

I'm on my 2nd week of IMRT radiation to the lung. It's making me very tired and weak. Got a fever & cough...maybe due to lowered immune system and caught the flu.

Debbie, Dr Rolle told me that I am not eligible for surgery because the mets are too central in location in the lungs.

Hope all is well. Hot in cali still

[D.ap]

Jen
I am sorry to hear of the flu happening
How many more IMRT treatments to go?
Is there any way to boost your immune system according to your onc?
I hope blood work is being performed for infection and or spetum testing.

How often are you doing blood work for Opidivo and or urine test?
Make sure you report ANY ill feelings as nothing is too insignificant to ask about. Promise??

I hope u get to feeling better real soon.
Fall here 60 degrees at night

Maple trees turning some awesome colors with all the record rains we've been getting

Wish we could share some rain with California.
Love
Debbie

[jenhy168]

Hello

I have 5 more IMRT treatments to go. They are super annoying to go to because of LA traffic and it's always freezing in the treatment room!

I haven't been tested to see if I have a viral or bacterial infection. I'm still coughing, but I think I have one more week of recovery to go with this cold / flu.

Opdivo - I'm doing bloodwork every other treatment. Treatment is every other week. So bloodwork freq is about once a month. No urine test required so far.
I'm really suspicious of whether opdivo is effective or not since side effects are minimal, but i guess we'll see. My next scan is in mid October.

We definitely need rain in Cali...hopefully Fall will bring us more rain. It still feels like summer with all this heat and humidity.

[D.ap]

Hi Jen
Is it ok to ask for a heated blanket or such ??
Wow what the HECK?
Need me to come to California ?
Please enlighten us I am so sorry
Hugs--Debbie

[Bonni Hess]

Dear Jen, Thank you for your thoughtful update. I am sorry that you are still suffering with a cough and the flu. I saw on the television ad for Opdivo last night that coughing and flu like symptoms can be a concerning side effect of Opdivo that needs to be reported to your doctor so I am wondering if your doctor has addressed/ is concerned about your continued cough and flu, and if he thinks they are unrelated to your Opdivo treatment? Are you experiencing any side effects from your IMRT treatments? My very best wishes are with you for very good news from your upcoming mid October scans and I am holding very tight to Hope that they will show stable disease with no new tumors as well as tumor shrinkage and disappearance as a result of your IMRT and Opdivo treatments. In the meantime, take care, feel better, and keep in touch as you are able. With special hugs, caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Wow, I'm surprised you saw a TV ad for opdivo....I watch a lot of tv and I haven't seen an ad for it yet.

I'm at the tail end of my cold/flu, so I'm not too concerned.

Radiation - they do give me a warm blanket, but it cools off in like 2 minutes since the treatment room is so cold. I do experience a lot of tiredness and some nausea with radiation. My body feels very tired and also decreased appetite. I think I've lost about 4-5 lbs after starting radiation. It might not seem like a lot but right now I'm 100lbs so it's kind of a big change for me. (Usually I always have a very good appetite since I LOVE to eat, but I guess the radiation makes me not feel like eating / not have an appetite for much.

I have chest CT scan in a couple weeks, and I will be requesting a brain MRI, so hopefully my doc will order me one since the last time I had a brain MRI was November 2014.

Thank you all so much for your support.

[D.ap]

Hi Jen

Good to hear from you.
I am so glad to hear feeling better and less flu feelings.
What does onc say about your weight and how to help build up strength and appetite?

Glad to be in midwest as I observe east coast happenings. Prayers to our friends east worthy.

Hugs
Debbie

[jenhy168]

So I haven't received my actual CT scan and brain MRI results yet, but I was told that there was growth in my lung mets.

Regarding the brain - they found a met. (Previously i've always had clear results in brain)

Won't know the result details until I see the NP today (doctor is out of country).

What is best for brain met treatments?

[Olga]

If the met is small, radiosurgery should take care of it in a definite manner - most of our patients who found their brain mets early and treated it with the proper level of the radiosurgery dose had their mets dissipated completely. GammaKnife was the best approach. Ivan had his 10 mm met surgically removed - we decided on that just because it was located very close to the surface of the brain, under the scalp and was easily removed by the neurosurgeon, 2 years ago, clean scans since then, thankfully.
Did you see the new clinical trial success stories - with the MEDI4736
http://www.cureasps.org/forum/viewtopic.php?f=70&t=1104

[D.ap]

So I haven't received my actual CT scan and brain MRI results yet, but I was told that there was growth in my lung mets.

Regarding the brain - they found a met. (Previously i've always had clear results in brain)

Won't know the result details until I see the NP today (doctor is out of country).

What is best for brain met treatments?

So I haven't received my actual CT scan and brain MRI results yet, but I was told that there was growth in my lung mets.

Regarding the brain - they found a met. (Previously i've always had clear results in brain)

Won't know the result details until I see the NP today (doctor is out of country).

What is best for brain met treatments?

Hi Jen

Regarding the brain met..are you getting all scans at the same facility?
I hope you are able to see a neuro surgeon soon to get a plan together and or put your mind at ease.
Gamma knife takes a little time to set up but it seems to be worth the effort.

In regards to the lung tumor possible progression..You aren't experiencing any respiratory issues and or runny nose issues are you?
Is the progression being seen in your IMRT area? Sorry i just had to ask.

Sometimes technicians, not knowing of a patience history, will share the tumor progression not knowing of prior treatments and healing going on internally.

Please let us know what you find out..
Your oncologist of sarcoma/hematology and or internal medicine appointment is when, to review the scans?

Love
Debbie

[jenhy168]

Hi Debbie,

Met with the NP today to get the actual results and talked to the stand in sarcoma doc since my oncologist (dr chmielowski - UCLA) is in Poland till end of week. Will see dr chmielowski on Monday morning.

So my brain met is in the occipital lobe - 3 mm. With some edema. They are ordering an authorization to see a neural surgeon and radiation oncologist so we can attack this. Anyone know of specialists that are good at UCLA? I assume I'm getting gamma knife? Is gamma knife normally a one day strong radiation treatment? What are the side effects and will they need to shave my head..? =\

My chest ct scan shows some growth in size of nodules in non radiated area. (I had radiation done on left lung). Some left lung nodules (probably in radiated area) had decrease in size.

However something odd happened - my right lower lobe lung collapsed. (Note that I had sbrt to two mets in right Lower lobe about 2.5 years ago). Perhaps that has something to do with the collapse? Or maybe there's some met blockage to an airway causing the collapse. It seems that this collapse was noted even a month ago when I did my ct simulation scan report for my radiation planning....and apparently my radiation oncologist failed to mention this to me?!?? Or maybe he didn't know?? It was in the ct simulation planning report so I'm not sure why he wouldn't think that's something of concern....

Anyways they are going to have me see a pulmonologist at UCLA.

All my scans and doc visits are done at UCLA.

I just hope that my most recent radiation to my left lung (since the area radiated was a large area about 6 inches) won't cause my left lung to collapse too later .... =\

Thanks all~ trying to stay positive.
Jen

[D.ap]

HI Jen

Sounds like gamma knife to me with all that are involved. One day with possibly several hours of treatments The procedure requires the head gear contacts to be shaven I believe.

Wow about the lung collapse.

You should of been notified and monitored when that was discovered. How is your breathing?
I would put an urgent request to see the pulmonologist PDQ.

I am sorry that fell thru the cracks for you.
Let us know of your consultation(s)

Love
Debbie
Ps ASPS very radio resistant
And last but not least studies of success in early morning treatments

http://www.cureasps.org/forum/viewtopic ... =557#p2570

https://en.m.wikipedia.org/wiki/Circadian_rhythm