Jen from California - Dx 2009

[jenhy168]

Hello again,

So I got my Chest CT scan w/o contrast results back today and everything looks "roughly stable." One of the targeted lung nodules they were tracking has grown about 3mm since January 2013. It was 11x10mm in 1/4/13, 12x10mm in 4/19/13 and 14x12mm in 7/24/13. But overall, the results say that there are roughly stable size of pulmonary mets and no new nodules.

The results didn't mention anything about my fractured right rib, so either the radiologist didn't bother to look at it or there's nothing worth mentioning. Not sure...

So since my onc says it is mostly stable, we will continue having me take Pazopanib.

The results also stated that there was local radiation related pleural effusion in the lower region of the right lung where I had radiation done... At what point does it become a serious issue or problem? I already had shortness of breath and coughing for the past year due to local radiation...

Thanks everyone for your help!! Hope all is well.
~Jen

[D.ap]

Hi Jen
Glad to hear from you
Your question :

The results also stated that there was local radiation related pleural effusion in the lower region of the right lung where I had radiation done... At what point does it become a serious issue or problem? I already had shortness of breath and coughing for the past year due to local radiation...

What does your oncologist say about the fluid level in your lungs?
A pulmanary doctor should help with that question too but be sure to involve your oncologist as he is in charge of your pazopanib med
You don't want to have an incident with infection in addition to your fluid
Let us know
Take care of yourself !
Sincerely
Debbie

Ps where is this tumor?

[Olga]

Jen, smaller pleural effusion is usually able to absorb by itself - like 50 ml is absorbed easily, the bigger ones have to be drained. The pulmonary specialists is able to estimate the volume of the effusion from the pics. You have to try to sit less so the lower portion of the lungs does not get suppressed all the time, when you move it improves the absorption.

[jenhy168]

Thanks Debbie and Olga.

Olga - good advice about sitting less. Since I don't work anymore, all I do is sit. It's interesting that my past CT scans didn't note pleural effusion but now it does. I had my radiation done in April of 2012. What about laying down...is that better than sitting?

I will consider going to a pulmonary doctor to ask about the liquid volume...It always takes about a month to get an appointment at UCLA for pulmonary specialists, so hopefully I can see one soon.

[Bonni Hess]

Dear Jen,
Thank you for the thoughtful update. I am so glad that your scans showed no new mets and that your targeted lung mets are "roughly stable" although I don't totally understand the use of the term "roughly" as it is not very definitive. I remain perplexed as to why the chest CT is not being done with contrast to obtain the most accurate and definitive assessment of the status of your lung mets, and am concerned that your monitoring scans don't also include abdominal and pelvic CT's to ensure that there are no mets in those areas. Adequate and vigilant scanning is vitally important in managing and fighting this unpredictable disease so that any new mets or increased growth can be detected at the smallest most treatable size. Since the radiology report didn't mention the previously noted fractured rib, I would encourage you to discuss it with your oncologist to make sure that this issue wasn't erroneously overlooked by the radiologist. During our twelve years of ASPS experience with Brittany's very challenging battle, we have learned the hard way that doctors and radiologists can and do make mistakes, sometimes with tragic consequences for the patient. Being well researched, as knowledgeable as possible, and extremely proactive and assertive is critical.
I Hope that your pleural effusion will resolve by itself without any type of other intervention, but think that it should at least be evaluated by a pulmonary specialist.
Take care, enjoy a beautiful California summer, and keep the Board updated as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

Jen, do you have growth rates to compare from before you started taking pazopanib? To me, it just looks like normal slow ASPS growth. Either way, it's definitely not stable. The oncologist or radiologist who calls this stable is doing an irresponsible disservice to you.

This definition of stability does not apply to our slow growing sarcoma. That's how mine went from 8mm to 15mm over the course of a year or along those lines, requiring rapid measures. This is the exact thing that I am afraid will happen to you as well. My advice? Start looking for other treatment now.

[Bonni Hess]

Hello again Jen,
Ivan has made a very important point. Although your scans may show only a couple of millimeters of growth on each new scan, those couple of millimeters can/will eventually accumulate to be a significant amount of growth over a period of time. This is definitely an issue which should be addressed with your oncologist to prevent the type of situation that Ivan faced as well as several other patients on this Board who suddenly found that their mets had significantly increased in size. In the case of Elisa who was on a Cediranib Trial at NIH she was abruptly taken off of the Clinical Trial due to more than 20% overall increase in the size of her mets since she began the Trial, but yet inexcusably nothing had been mentioned to her up to that point about the continued small amount of growth in the mets from scan to scan. "Stable" should mean STABLE!, and not a couple of millimeters of increased growth from scan to scan. The description "roughly stable" used by your radiologist is to me very vague and actually quite unprofessional. You need and deserve a more definitive and accurate assessment of the situation in order to be as well informed as possible about the actual status of your disease.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Hi Ivan - thanks for your advice.

So are you saying that both the radiologist reading the scan and oncologist are wrong in calling it roughly stable and advising me to stay on pazopanib? I don't have past growth rates prior to pazopanib on hand to compare to, but it seems to be more stable now on pazopanib than before since there are no new nodules...

I think I'm going to stay on Pazopanib for three more months and get another CT scan and see how the results are then. I think it's worth staying on it in my opinion. If it grows very slightly again, I will probably stop taking Pazopanib. I've already tried several other treatments that either failed or only worked for about a year, so my oncologist said that the next drug I should try if / when pazopanib stops working is Sutent.

I do, however, really need to get copies of my old scan results to see if I can track growth patterns. I am at fault for not being more responsible and organized in keeping all my scan results handy and saved all in one place. =/

~Jen

[Bonni Hess]

Dear Jen,
It is probably a good idea to stay on the Pazopanib for now since it seems to have at least prevented the growth of any new tumors (although I remain concerned about the fact that your scans are non contrast chest CT scans that don't include regular pelvic and abdominal CT's as well as at least one annual full body bone scan) and any significant increase in the size of your mets. It is just extremely important to be vigilant in requesting and keeping copies of your scans and radiology reports for your personal review, and to insist on visually reviewing the scans with the oncologist and/or radiologist with the intitial scans from when you began your Pazopanib treatment to make sure that any growth is being noted and adequately monitored.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Hi Ivan - thanks for your advice.

So are you saying that both the radiologist reading the scan and oncologist are wrong in calling it roughly stable and advising me to stay on pazopanib? I don't have past growth rates prior to pazopanib on hand to compare to, but it seems to be more stable now on pazopanib than before since there are no new nodules...

I think I'm going to stay on Pazopanib for three more months and get another CT scan and see how the results are then. I think it's worth staying on it in my opinion. If it grows very slightly again, I will probably stop taking Pazopanib. I've already tried several other treatments that either failed or only worked for about a year, so my oncologist said that the next drug I should try if / when pazopanib stops working is Sutent.

I do, however, really need to get copies of my old scan results to see if I can track growth patterns. I am at fault for not being more responsible and organized in keeping all my scan results handy and saved all in one place. =/

~Jen

Hi Jen

NONE of us are ever guilty of not being totally organized
Ivan has this awesome software program he can share that organizes the on going scans.
Until then, what kind of treatment ,time frame, does your oncologist see possiblely happening with the fluid in your lung? Is the pazo taking front row seat and then addressing the fluid?

Is there anyone else on the forum that has dealt with this effusion?

Keep that pulmonologist appointment. They will work with your Oncologist to help you breath better

Love,
Debbie

[D.ap]

Ps
Jen letting a doctor know that you have compromised health issues sometimes gets you in faster
They schedule according to those who need to be seen first if that makes since
If a person is not a seasoned veteran like me with doctors visits they may not know the ropes
This will be a good investment in your healthcare
Let us know when you are closer to your appointment and if you like we could send you with some questions to ask
Take care
Debbie

[jenhy168]

Debbie,

My oncologist said the pleural effusion was of no concern :/...However, I don't even think that he looked at the CT scan himself so he probably doesn't know how bad or not bad it is. But I definitely will try to get a sooner appointment with the pulmonary doc if I can by saying it's more urgent... Good advice

I'll post again once it comes closer to my appointment so I can get your input on what to ask.

Thanks all!

[jcs2007]

Hey, Jen, thanks for your update and I hope you get into see the pulmonary specialist soon to help you with this complication. My son, has a small lesion that has grown slightly and radiation has been mentioned as a possible treatment for him too. Just keep vigilant in your treatment and keep the board posted on your progress. Take care

[jenhy168]

Hi all

I just saw the pulmonary specialist at UCLA and he said that the pleural effusion / thickening of the pleura is expected and there is nothing to be concerned about. He looked at the scans with me and he indicated that it doesn't look like there's any fluid in there due to the density of the area in the image. So that's good...

He advised me to keep using advair for my pneumonitis cough and gave me a flutter valve to breathe into to help with my breathing. He also advised me to go to the hospital to get some breathing tests done so I can have a baseline comparison of how my breathing is and whether it gets better / worse in the future. Anyone ever had breathing tests done?

I'm still continuing Pazopanib and will have my next chest CT scan in about 2.5 months.

Hope all is well with everyone.

[D.ap]

Jen
Glad you made it to the doctor
What was he able to share pretaining to your question in your earlier post which was
At what point does it become a serious issue or problem? I already had shortness of breath and coughing for the past year due to local radiation...
Take care
Debbie.