Tom from Pennsylvania - Dx 2002, RIP 2021

[Kathy]

Thank you Bonnie for your very sweet response. I needed that. I have been thinking. Would the bone scan Tom had this past Sprimg show if something was in the jaw? We obviously still will get an mri but I thought it was worth checking!

[D.ap]

Hello again dear Kathy,
I am so grateful that the oncologist was so responsive in ordering an MRI to evaluate Tom's jaw pain. I am holding very tight to Hope that it is not ASPS related, but agree with Olga that jaw pain (or any pain for that matter) should not be overlooked or disregarded given the nature of this disease. You should not be critical of yourself dear Kathy for "letting this slip" as it is so hard to determine what is just normal body aches and pains, and what may be ASPS caused. Brittany gets reluctant to tell me about any new pain she may have because she thinks that I worry too much and always over react, but I just think it is better to be safe than sorry and have everything checked out. It seems that the oncologist should have been aware of Tom's jaw pain if he was doing a thorough job at Tom's appointments in asking him if he had any new pain or symptoms, but maybe Tom wouldn't have mentioned it anyway, and Hopefully his jaw pain was just the result of something benign such as TMJ or stress caused, especially since it has not seemed to progress and increase. Take care dear Kathy, keep the Board updated on the results of the MRI, and know that most positive thoughts and very best wishes are with Tom and you.
With more hugs, deepest caring, healing wishes, love, and continued Hope,
Bonni

Hi Kathy and Tom
I also agree with Olga and Bonni,as I know you do, about not ignoring the pain in Tom's jaw.
On your question about the jaw and the bone scan detecting the possible issue of a tumor being the culprit of the pain. I feel that regardless of what the bone scan had shown,there needs to be a current examination AND a current scan would be in order.
I question whether it would truely be in the bone . On the other hand there is ongoing discussion in the pathology department beginning as early as 1994 to there is a subset of ASPS that happens in the orbital areas. Some folks will get it in their ASPS lives and some won't.

( go to miscellaneous discussion. Its a one liner at the very end.)

http://www.nature.com/modpathol/journal ... 0526a.html

There are other refences if you proceed to the refence number "42" . They were passworded so maybe your doctor has access?
Just wanted to check in and let you know we are sure thinking about you guys

Love
Debbie

[D.ap]

Kathy, they say that this trial is for the GD2-positive Sarcoma but I do not see anywhere in the text that the patient's tumor is tested for it pre-trial? Do you want to contact the trial investigator to find out how it works? I had Ivan's tumor tested for other markers for some immonotherapy trial awhile ago that had some responders from the people I know trough the general sarcoma mailing list, but his was negative so he did not qualify.

Kathy,

Are you familiar with the GD2 that Olga is mentioning? Does testing positive have a propinsity to indicate bone verses soft tissue metatisis .
Debbie

[Bonni Hess]

Good Sunday morning dear Kathy, If Tom's bone scan was a full body bone scan it certainly seems that it would show a jaw met, but I agree that it is best to err on the side of caution and go forward with the jaw MRI. Also, you may want to ask the oncologist and radiologist to review the bone scan to try to determine if there is anything that was missed. Hopefully the MRI will be done soon as the waiting and worrying is so very difficut and stressful. Please take care and feel the power of Hope, positive thoughts, and love that surrounds you and Tom.
With deepest caring, special thoughts, healing wishes for Tom, much love, and continued Hope,
Bonni

[Kathy]

So after speaking with the nurse at the oncologist office on Friday and being told that an mri would be ordered, I wake up to this response from the oncologist:

"I cannot tell you for sure that what is going all in that area but he it would be very unusual for cancer to have those kinds of symptoms. I would observe at this time and if it gets worse, that area needs to be checked."

I have already called Pittsburgh - There is a wonderful PA in radiation oncology that has helped us with multiple referrals in the past. I explained to her via voicemail that we are not scheduled to see the oncologist they recommended until the 6th of November, but is there any way we could get an mri of the jaw ordered. I am not sure what he wants to wait and observe as Tom has admitted to the are hurting every day for a year. How much longer are we to wait and observe..... I have emailed him back explaining the other cases and asking for someone to take a closer look at the bone scan that was done.
As always we will keep you posted.

xoxo
Kathy

[Kathy]

Ok, It looks like I made enough of a stink to get the local oncologist to schedule the mri of the jaw. I will keep everyone posted on the results... Let's pray I am overreacting!

[Olga]

The right (polite) answer to an oncologist would be: "Yes, it is rare for sarcomas to metastasize to a jaw bone but ASPS has a very unusual pattern of metastasis with known cases of the mets to a jaw bone. In our ASPS community few current and past members had their ASPS metastasized to a jaw bone, and because the symptoms were mild and non-specific in the beginning, the mets were misdiagnosed as some dental or joint problems. Late diagnosis made their treatment very challenging and traumatic and we want to investigate the symptoms Tom is having early to rule this situation out." It takes time for the oncologist to get to know you and to realize that you are not needlessly panicking, but just being reasonable alert.

[Bonni Hess]

Dear Kathy,
I am so sorry and disgusted about Tom's oncologist's inexcusably irresponsible "wait and see what happens" attitude, and greatly applaud your pro-active refusal to accept it and your victory in succeeding in having an MRI scheduled. There is truly no such thing as overreacting to any symptoms with this upredictable disease, but I am holding VERY tight to Hope that your concern will prove to have been unnecessary and that a benign and easily resolvable cause for Tom's jaw pain will be found. I am very grateful that you are seeking treatment with a new oncologist as Tom's local oncologist's uncooperative and dismissive attitude and actions are very concerning and certainly do not warrant continuing to entrust Tom's care and treatment to him. An ASPS patient should NEVER wait for something to become symptomatic, and as Olga has so wisely said," late diagnosis makes treatment very challenging and traumantic". Take care dear Kathy and keep the Board updated as you are able.
With congratulations on your scan scheduling victory (which should never have been a battle in the first place!), special caring thoughts, healing wishes for Tom, much love, and continued Hope,
Bonni

[D.ap]

Dear Kathy,
I am so sorry and disgusted about Tom's oncologist's inexcusably irresponsible "wait and see what happens" attitude, and greatly applaud your pro-active refusal to accept it and your victory in succeeding in having an MRI scheduled. There is truly no such thing as overreacting to any symptoms with this upredictable disease, but I am holding VERY tight to Hope that your concern will prove to have been unnecessary and that a benign and easily resolvable cause for Tom's jaw pain will be found. I am very grateful that you are seeking treatment with a new oncologist as Tom's local oncologist's uncooperative and dismissive attitude and actions are very concerning and certainly do not warrant continuing to entrust Tom's care and treatment to him. An ASPS patient should NEVER wait for something to become symptomatic, and as Olga has so wisely said," late diagnosis makes treatment very challenging and traumantic". Take care dear Kathy and keep the Board updated as you are able.
With congratulations on your scan scheduling victory (which should never have been a battle in the first place!), special caring thoughts, healing wishes for Tom, much love, and continued Hope,
Bonni

To Kathy . Good for you for not standing down!!
Tom you've a great person on you side as I know you are very well aware of!

I second the motion of Olga and Bonni

So I won't cry I respond WOW!
Let us know when and what you find out.

Out of a lack for a better word the info will be "amo" for all our future family.

Much love coming your way
Debbie

[Kathy]

I spoke with md Anderson about the study yesterday and they have decided to only take osteosarcoma patients. They kept Tom's information and will contact us if they open it up. On the home front, the jaw mri is scheduled for next Thursday. He has increased his pain meds. He didn't want to do it but it is providing a little more relief.
much love to all of you, as you are constantly in our prayers!
Kathy

[D.ap]

Kathy and Tom
So glad to hear you are taking a look see at the jaw
I was looking back at Toms history and trying to see any patients that were similar to where Josh is currently
I didn't see how many tumors were removed by Dr.Rolle on Toms left lung?
Could you post that when you get a moment?
Thank you in advance

Love
Debbie

[Bonni Hess]

Dear Kathy,
I am sorry that Tom will not be eligible for the MD Anderson Immunotherapy Trial at this time, and also that he is suffering continued pain necessitating an increase in his pain meds. I am grateful that the jaw MRI has now been scheduled, and will be holding Tom and you very close in heart and thought during the coming days knowing how difficult the scanxiety of waiting for scans and results is. My most positive thoughts and very best wishes are with both of you for good scan results showing no ASPS jaw mets and a benign easily treatable resolution to Tom's jaw pain. Take care dear Kathy.
With deepest caring, healing wishes for Tom, much love, and continued Hope,
Bonni

[D.ap]

Kathy
I second Bonni's hope of good scan results!
Love
Debbie

[Kathy]

Thank you so much for the always encouraging and uplifting words Bonnie and Debbie! To answer your earlier question Tj had 14 removed from the left lung.
Xoxo
kathy

[Bonni Hess]

Dear Kathy,
Please know that I will be right there beside Tom and you in heart and thought during Tom's tomorrow's jaw scan and will be holding very tight to Hope for good scan results showing no ASPS met and only a benign easiy treatable cause for Tom's concerning jaw pain.
With deepest caring, positive thoughts, healing wishes, much love, and continued Hope,
Bonni