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

[Amanda]

Well, the good the not so good and the omg i will be swollen and ugly for a few days update!

The antibiotics really didn't work well enough to support trying again another round. An at this point i would rather get this over with an in a month and a half get my first lung surgery done before the lil asshats grow to two CM!

On Tuesday i will see Dr Blackwell and i will be scheduled for surgery. they will remove not one but two spots they think maybe cancer there will be NO biopsy because this is enclosed inside the bone for the most part the risk is not worth the try.. What ever this is infection or sarcoma is is eating the bone and when an infection is this destructive they remove the areas anyhow and it will be treated as sarcoma so the risks will be followed with a highly vascular sarcoma.i am still in pain... NORCO and the anti inflam is not covering this up... Tis is the devil in my jaw no matter that diagnosis

they will pull a few teeth in the area that are affected an two weeks *I think * after surgery i will get implants.. an they maybe also doing the upper teeth also because of the cancer / infection i have had huge pain and problems the last two years and have pulled teeth

The team i have is world class an i will be in good hands...
I will be at UCLA for five to seven days...
Its weird has anyone else had this cancer travel one side? My calf, rib, jaw are all right side :/ lungs are both but is it like that with any others?

My face will be swollen and so i will look bad an i am worried i will frighten Aidan so he may need ot be at his daddy for a few days longer then we thought.

I am happy i can have this done and happy i was told it is not spreading.. I feel like i am getting tired of having operations and now i must have two lung surgeries also an one is a re do... I hope that i snap out of his funk and start to be tough again but for right now it is hard to be that warrior.

Tuesday i will see a chinese doctor that works with these doctors *Yes he is from china* an we will start acupuncture for pre med treatments an he will be following me thru all my surgeries. I told him though he is trained with herbs that there is concern that some herbs maybe dangerous for ASPs patients he agreed!

I am still continuing...
Vitamin D with k liquid *when we ran blood work even while taking this i was low* so this is now two times a day with yogurt
Vitamin C 1000MG x 2 a day
minerals because surgeries strip our bodies of them
an a spectrum of B vitamin

I will post back tuesday..

Love to all an happy holidays!

Nothing more unless the doctors decide on it...

[D.ap]

Amanda
I am so glad you are going forward so bravely and meeting this unknown beast!
We all are praying for infection but are very glad the doctors are being cautious about the surgery knowing of your history with ASPS
LOTS of love and prayers coming west..!

Much love
Debbie and family

[D.ap]

Ps. Make sure everyone knows you are taking vitamins. Those aren't always on med charts. Better yet write them ALL down and make copies. Give them to all doctors and especially nurses as they are the other half of the team that makes things happen! That includes the antibiotics you've been on they will need to look at that for post surgery treatment
Debbie

[Ivan]

So sorry to hear about that!

Did you get a chance to converse with Dr. Littrup? An ablation is a much less invasive procedure.

[Bonni Hess]

Dear Amanda,
I am so very sorry and sad that your antibiotics don't seem to have been successful in resolving your jaw problem and pain and that you are now facing surgery to remove two concerning spots. This is NOT how you should be spending this holiday season (or anytime of the year)!! I was SO Hopeful that you would be feeling much better by now, but I continue to hold VERY tight to Hope that the lesions will prove to be benign and easily treatable, and once a definitive diagnosis is made you can receive the proper treatment to speed you on the road to healing and recovery.
I am very grateful that you have great confidence in your medical team which is so important, and I am thankful too that they are proceeding very cautiously with the surgery to try to prevent any seeding of tumor cells if it is unfortunately determined to be ASPS.
I know that you must be very discouraged by all that you have already been through the past couple of months with your relentless jaw pain and suffering, and everything that you are now facing, but I also know that you will find the strength and courage to do what you need to do, just as you always have done throughout your courageous battle. You have an incredibly strong and invincible spirit dear Amanda, as well as the strengthening support and special caring of all of us on this Board who care so deeply about you. Please know that you are not alone in your battle and reach out to us whenever you need encouragement or other opinions and input. Most importantly, take good care of yourself, get plenty of rest, focus on your healing, and keep the Board updated as you are able.
Holding you very close in heart and thought and reaching out to share gentle hugs, healing wishes,warm friendship, and continued Hope,
Bonni

[Jorge]

Hi Amanda,
I'm really sorry to hear the antibiotics didn't work out finally and you have to go through such a surgery (sounds complicated to me). The good thing is you have a excellent, world class team there to help you.
I just hope the pathology of the 2 suspicious spots is not ASPS and wish you a speeding recovery after the surgery.

Lynette

[Amanda]

Hello,
Well surgery is now booked at UCLA Westwood 1/14/14

It is cancer an it is over 2 CM almost 3 CM

They said i will be ok an predict all will be out in one surgery an they are going to TRY and not split my lip by taking my whole half a jaw.. OMG i cant believe i am typing thay this is going to happen to me :/ !!!
They will remove and artery from my left leg and part of my bone and make a jaw...

He said i was healthy and young an usually people are farther along with there situations when he sees them

The surgery is 10 to 12 hours!!! I will stay in the hospital for seven days...

This means BE PROACTIVE PEOPLE at all times! If it hurts they must CT it ASAP!

They will be at the time of surgery looking at glands and if they look off in a test they are taking them right away...

They will fix my teeth in six months...

I will look FOXY with new teeth lol Well this is Hollywood right

I will be drinking foods for three to four weeks an anyone that has a healthy non citric or sour smoothy recipe please share it...

I am trying to focus on the day after surgery and Focus on the fact that i am lucky! Any other reasons to not be freaking out i would love to hear please....

Love and hugs!

[D.ap]

Hey there girl
The docs are checking throat glands ? The mass is located upper right area ? Or how is it described on CT report?
Let's get through this. Does it look vascular ?

Be strong


Love ya

Debbie

[jenhy168]

o my gosh, you are so brave and strong. That surgery seems so intense.

[Olga]

Amanda, I am very sorry to hear that, it is just completely unfair. But I know the reason for you not be freaking out. It seems that it is NOT life threatening. And you are not located in a third world country without health insurance and qualified docs around. Your team looks very competent and they have a sound plan. I didn't get the part with the leg though, will you be able to walk after? One thing is guaranteed for sure - you are going to loose weight. Sport type drinks and shakes with proteins and calcium are a good choice.
Everyone take notice - you have to have a bone scan at least once a year, especially with the previous history of the bone metastases.

[Jorge]

Hi Amanda,
I'm so sorry to hear that and in shock of the result. The situation of your lung is so good--just a few small mets, comparing to many other ASPS patients.
Glad to see you're so brave and the doctor works out the plan so soon. Agree with Olga, the surgery plan sounds really advanced. We won't be afforded of such a plan here in any way.
Wish everything is well before the surgery and a sucessful surgery in Jan.

Best regards,
Lynettte

[Olga]

I have a question. How was it finally diagnosed - a biopsy? Have you had a MRI scan done. Can you get a copy and send to Dr.Littrup just in case he has some idea how to fix it in a less traumatic manner - I know the chance is slim with the size like that but still worth trying, he is on the vacation now as I understand but you can call and talk to Barb re. when he is back. Also ask her what happens to the ablated zone when the bigger bone met is cryoablated - does the ablated zone get smaller as the time goes may be there is some way to reduce it first to allow for the less traumatic surgery. May be it does not make sense and the surgery is going to be needed anyways even if the met is killed by the cryo as the structure is going to be unstable and break down as the met split it?
May be you can also try the Cabozantinib to reduce this bone met? Ask your oncologist to try to ask other oncologists around if anyone used it with this goal and what happened, they speak to each other informally to get inside info. Brian's wife is/was on it but he is not positing so we do not know what her bone mets result was.

You have the time till your surgery date to consult re. other options, use it.

[Bonni Hess]

Dearest Amanda,
I am so deeply sorry about the heartbreaking confirmation of an ASPS jaw bone met and the difficult surgeries that you are now facing, but I am grateful that the tumor can be removed, that you have a very competent and experienced oncology team in whom you have great confidence, that they feel that the prognosis for successfully completely removing the tumor is very good, and that a treatment plan is already in place and scheduled. I am very grateful too for your immense emotional strength and courage and your wonderful positive attitude which are so critically important in facing and enduring the challenges of this insidious disease.
Although surgery has already been scheduled and may be determined to be the only viable treatment option, I agree with Olga that it would be very advisable to immediately explore other possible less invasive and traumatic treatment options including Cryoablation with Dr. Littrup. During our 12 and a half year ASPS journey with Brittany, we have found that doctors don't always offer/or are aware of every possible treatment option, and there have been several situations where we have found and succeeded in obtaining different and better treatment options than those which were being recommended/offered by Brittany's highly qualified and respected doctors. I urge you to seek second opinions or alternative treatment options during the month before your scheduled surgery to ensure that the planned surgery is the best treatment approach. In the meantime, know that you have the support and special caring of all of us on this Board to strengthen you through this difficult experience and whenever you may need some encouragement and advice. Take care dear Amanda, stay strong, and let Hope continue to lead you through each day.
With gentle hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

[D.ap]

Dearest Amanda,
I am so deeply sorry about the heartbreaking confirmation of an ASPS jaw bone met and the difficult surgeries that you are now facing, but I am grateful that the tumor can be removed, that you have a very competent and experienced oncology team in whom you have great confidence, that they feel that the prognosis for successfully completely removing the tumor is very good, and that a treatment plan is already in place and scheduled. I am very grateful too for your immense emotional strength and courage and your wonderful positive attitude which are so critically important in facing and enduring the challenges of this insidious disease.
Although surgery has already been scheduled and may be determined to be the only viable treatment option, I agree with Olga that it would be very advisable to immediately explore other possible less invasive and traumatic treatment options including Cryoablation with Dr. Littrup. During our 12 and a half year ASPS journey with Brittany, we have found that doctors don't always offer/or are aware of every possible treatment option, and there have been several situations where we have found and succeeded in obtaining different and better treatment options than those which were being recommended/offered by Brittany's highly qualified and respected doctors. I urge you to seek second opinions or alternative treatment options during the month before your scheduled surgery to ensure that the planned surgery is the best treatment approach. In the meantime, know that you have the support and special caring of all of us on this Board to strengthen you through this difficult experience and whenever you may need some encouragement and advice. Take care dear Amanda, stay strong, and let Hope continue to lead you through each day.
With gentle hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

Amanda
Think about this, in bold, from Bonni and Olga

Can we help in any way?
Hugs !

Love
Debbie

[Jorge]

Hi Amanda,
Does your doctor schedule a full body bone scan? And you can ask for the brain MRI also at this time.
I know you must have too much to worry now, but consider this.

Take care and stay stong.
Lynette