Amanda R :) from California - Dx 2009 - RIP March 2015

[Amanda]

Hello everyone
I would like to ask everyones help in this situation. I will be talking ot my Oncs who want to re stage my cancer and i want to make sure that every scan is done.
Just a heads up.. they have never done blood work as far as i know befoire my scans and this as far as i know maybe wrong because i was having it done so much but i wuld like ot know from you all the exact test that needs to be done. I also was not aware that i should be drinking a lot of water You have all been my guide down this path and right now i really need your imput! <3

So what scans should be done?
when and what kinds of blood work need to be done?
when and for what tests do i need to drink a lot of water?
Any tips at all about getting in the MRI without freaking out would also help me a lot *sigh*
What questions about hormones or any thing from the biopsys should be asked that are important?

What is re staging?

I know this is asking a lot and i am sorry
These forums have been quiet and though i hope when it is that everyone os doing so well that they have just been busy enjoying life. This is what my prayer is when i get replies!

Also, Olga you were so right! Anyone that gets radiation done to an area with clean margins! Think twice because as i was told re scurance is not a huge persentage and i am now having still a year later pain and swelling

I hope that everyone is well and will check back later <3

In healin hopes for all!
Amanda

[Bonni Hess]

Dear Amanda,
It was good to hear from you. I can sense that you are very nervous about your upcoming scans, and you have asked some very good questions. I don't know the answers to all of your questions, but regarding the types of scans that you should have done, it is important to have chest/abdominal/pelvic CT's at least every six months depending on the status of your disease, a brain MRI every six months to a year unless you have a history of brain mets you need to have a brain MRI every three months, and you should have a bone scan at least once a year. Brittany always has blood work ordered for her and done prior to her chest/abdominal/pelvic CT scans, but I am unsure of the reason for this. It is very important to drink plenty of water following a CT scan with contrast because apparently the contrast can cause kidney damage. For some reason, and I feel inexcusably, this is something which the radiology nurses don't always tell patients about, but according to many nurses who Brittany has talked with through her eight and a half years of innumerous CT scans with contrast, it is a well known fact that anyone having a CT with contrast should be aware of.
I assume that you were diagnosed with Stage 4 ASPS since you had lung and rib metastasis in addition to your primary tumor, so I don't know why your oncologist wants to re-stage you, but this is certainly a good question to ask him. Hopefully others on this Board will be able to provide some input or answers to the rest of your questions which I was unable to answer. Please know that my special thoughts will be with you during your upcoming scans, and that my best wishes are with you for very good results which show NED as your oncologist has told you may be possible based on the fact that the two spots in your left lung have remained unchanged for the past year. Take care dear Amanda, and keep the Board updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Amanda, the re-staging in you case could probably mean that they want to declare you NED - but as I remember you still have a few small mets in the other lung so it is not a restaging but just a status check up? They will probably perform a CT scan of the chest (it includes upper abdomen in the visible field), MRI of the brain and may be of the primary site and where resected ribs was, bone scan. CT scan is usually done on a regular basis and the rest of the scans are done once a year when there is no history of the brain/bone mets and more often if there are some already found and treated to check if the local treatment was successful. Blood work is not done regularly in our case, although they are more then happy to request it when I ask, and I ask for it at time to see if there are elevated liver enzymes, it might trigger the addition of some other scans to rule out mets to liver.

[Arch]

Dear Amanda,

Sree always had blood work done before his CT scans with contrast, infact they never took him for scanning without checking his serum creatinine levels(which I think is an indicator of renal function). All the contrast dye has to be filtered out of the body by the kidneys and so they want to make sure the kidneys are working fine.

Apart from his CT scans, he has had a brain MRI and MRI of the leg(primary site) to check if everything is ok. He has not had any bone scans.
He has also had a full body PET CT scan in the beginning, this is a PET and a CT combined, so even if nothing lights up on the PET, they still have the CT aspect to check for any abnormalities.

Take care Amanda and hope your doctor visit goes well.

Regards
Arch

[Amanda]

Thank you all for reasponding so fast
Poor Dr Foshag I have a list now of what i want done every six months and every three months, lol
In reference to the abdoman and pelvic dont i have to drink that gross stuff? Or is it a regular CT with contrast?
His assistant said that they are looking at staging and i asked if they were looking at an NED and she said yes. But, there are the two things onthe left side yes Olga great memory the two things on the left side as of last scan and that havnt changed and i guess from my last talk with him when i told him i just want them out anyhow he said he didnt know if he realy felt that there was a need if at all and that we would see. So i am confused and made an appointment for tomorrow to go over every thing and give him this list of scans

6 months will be brain MRI and bone scan.

3 months will be CT chest, pelvis, abdoman.
also blood work pre scans.

Though i will need to be heavly druged for the MRI i want this done no matter what every six months for at least the first three years.

wow wouldnt it be nice if i was clear other then the two things on the left side and wouldnt it also be weird. Its like i almost dont trust this I know the other Amanda had i think also two things in the left side and she is fine now and was also a stage 4 :/ This diagnosis is so confounding and frustrating! I was told i should be happy this is great news and i smiled at them. But, inside i know and feel different ... It is one thing to be positive and it is the other to be both positive and realist in this situation because this way if it does change the world will hopfully not crash down again as hard as when I / we are diagnosed...

In healing hopes for all!

Amanda

[Bonni Hess]

Hello again Amanda,
Because of your current disease stability, you may only need to have the chest/abdominal/pelvic CT's every six months and the brain and bone MRI's once a year unless you begin to experience some concerning symptoms. If you have a chest/abdominal/pelvic CT with contrast you will need to not eat or drink anything since midnight prior to your scans, and you will have to drink the contrast which is usually a not very palatable chalky barium drink, but some of the radiology departments, including Cross Cancer Institute in Edmonton, are now are offering a juice flavored drink like Crystal Lite in different flavors like lemon, orange, fruit punch, strawberry kiwi, etc. which is much easier to drink. In addition to the oral contrast drink, you will also receive contrast administered through an IV once you are in the scan room. I am so Hopeful that your scans will show that you are NED, but with this unpredictable disease you are right in wanting to be positive and optimistic, but still remain vigilant in monitoring with regular scans. My continued best wishes are with you and I will be anxiously awaiting your next update following your scans which will Hopefully bring good news of NED!
With special caring thoughts and continued Hope,
Bonni

[Olga]

Amanda - Bonni is right, there is no need to have CT scans so often - after all they are now very high resolution scans and the dose of the radiation is *200 times of the regular X-Ray so it is not easy for the body to have it so often, you can move to at least 4-5 month interval in the beginning. And it seems that there is no need to have bone scan done every 5 month because as per our oncologist opinion, bone mets are very symptomatic and usually people find them before of the scanning, so there is less risk to miss them - did you have a pain in you rib? And I am not sure if insurance company will approve brain MRI every 6 month - although I am all for having it often, as this scan is great for finding mets and not that bad for the body, it is also very expensive for insurance company.

[Amanda]

Hello everyone
I will be having all my scans done on friday and i was wondering if this was going to be a lot on my body :/ we have usualy broken this all up over time int he past...

9:00 MRI with contrast of the brain.. with no blood work done first .. i have never had this done with contrast and was wondering can i get sick form it?

10:30 blood work and then drink that yucky stuff and wait 30 minutes then CT with contrast of Pelvic, abdomen and chest...

Does this seem like a lot to put on my body thru in such a short time span with the contrasts and the drinking stuff :/

I am still swollen on the abdomen from my surgery btw :/
I am as usual so freaked out about results *sigh* i am trying to be positive but it is so hard at times!

I will be I HOPE posting back to you all on friday the results and i am deeply praying that all is clear and i hope that the two things ont he left side are gone
*Yes, i know i wish hard and aim dam high* lol They are saying there was realy no change durring the last year and so they do not expect to see any thing. Yet ASPS is to unpredictable and they have also stated this and all we can do is hope

I wil be seeing my Onc at 12:00 to get the results he and his guy will be reading them not the places so i will know the same day...

Let me know what you all feel on this <3

In healing hopes for all!

Amanda

[Olga]

Amanda, I would call radiology and ask them if both of these contrasts have the similar toxicity and exertion route and if both departments (MRI and CT) know that you are scheduled to have both scans with contrast on the same day. I do not know the answer, but you should get a clear one before going to have them at the almost the same time.

[Amanda]

Hello Olga,
Yes, i will do this because it for some reason send off a warning in me... That is a LOT of junk to put in my body within a three hour time slot.. I will talk to my Onc actually because the radiation depts all know this is going to happen and when i asked they said it was fine :/ the two injections/IV are both within two hours and that gross drink...
I wil post back what he says. I am also cautioned becayse i still have swelling and it is in my abdomen and this drink may creat pain also so i ned to ask.

I just want to get these over with and pray that they are clear other then my left lung and hope it is still just two things.

Amanda

[Amanda]

Hello
I have prelim results on my scans with conrrast and that yucky drink and they are all clear!!! I asked about the left side where the two things were and he said this is just a prelim but he didnt see them and he said they were really small even when he did see them!!!

So CT chest, abdoman, pelvic clear as of right now

I went to get the brain MRI and we tried but i will need to be put under if we are going to do an MRI I am to clostraphobic..

We did another CT of bain though with contrast and that is also clear!


So i will wait fro the final but this is fromt he Onc himself looking at these scans.. I am very happy yet still as allways sceptical as i am aware that ASPS can drop a house on me at any time it wishes to..
It is safe for me in a prelim to be so happy?

In healing hopes fro all!

Amanda

[Bonni Hess]

Dear Amanda,
This is WONDERFUL NEWS!! and I am SO very happy for you! Thank you for sharing the great happiness and the strengthened Hope that this brings to all of us who are following your journey, and who also share your battle with this insidious and unpredictable disease. Has the doctor re-staged your ASPS based on these miraculous NED results, and will you know go to a schedule of having scans less frequently? Please feel the embrace of my happy hugs, have a beautiful weekend of celebration, and keep in touch as you are able.
Sharing the immense relief and joy of your wonderful scan results with much happiness, special caring thoughts, warm friendship, and continued Hope,
Bonni

[Amanda]

Hello
I just got the call from my Onc and they said all is clear! I am in shock and very happy!

I asked about the two things in the left lung and they are no longer seen!

Has this happened to others before?
I know it can come back and i hate that feeling! I know it can come back in thirty years or tomorrow...
Please, i need imput this feels so weird to me.. i feel like it is not true and that after all i have been thru that they are all wrong and i am paranoid about this.

So i asked them if this means i am NED and they said yes!

So for today and i pray for my whole life i am NED!
As far as i am concerned the scans will remain every 4 months for the chest and I hope every six months for the abd, pelvic and brain.
Would love impout from you all on that also <3

Please, i need to know what you all think and feel <3

[Olga]

Amanda - we all are happy for you and it sounds like a reasonable good plan - be happy, don't worry and get these every 4 months chest CT and every six months abdomen, pelvic and brain scans for at least a year from now, it is really sufficient to catch anything early enough. Then it will be seen if you can be moved to a less frequent schedule. Life is giving a gift to you, take it and use it with a gratitude,try to spend less time here for now.

[Bonni Hess]

Dear Amanda,
I am sharing the great joy and strengthened Hope of your wonderful news with immense happiness, and celebrating with you across the miles. I completely agree with Olga that you have been given a very special gift so you need to now move forward with Living Life instead of Living cancer, while still remaining vigilant in having regular scans. Take joy in the news that you received today, take very good care of yourself, and hold tight to the renewed happiness and Hope that is in your heart.
With happy hugs, special caring thoughts, and continued Hope,
Bonni