Josh from Kansas - Dx Sep 2012

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D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Good morning all

Our oncologist meeting was yesterday and we are faced with another challenge
Our adrenal gland was discovered to be swollen or larger then normal in our scan after the DC
of sutent. It measured 1.6 cm and the doctor said its true size should be 1.5cm.Joshua became hypothyroid while on sutent so our hope is the adrenal glands suffered the same lambasting and was simply showing stress.
We are not being told that it is or has a tumor
but apparently the shape is not normal as I understand it. I was told without a biopsy we can't know

Also there are 2 additional images that have been the same for a year ? showing on the liver :roll:

We are scheduled for a full body scan on April 19 to establish a baseline scan before we start the Temador after completing the SRS

Our struggle still continues with getting weight on Josh as he is now down to just under 110lbs
We are once again regrouping and taking another run at the PD trial app as the suntinib disqualified us from the trial . With active brain tumors and lack of BM ,it's certainly more difficult for both ourselves and trial folks to allow Josh to enter

Keeping the faith : )

Love to all
Debbie
Debbie
Olga
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Re: Josh from Kansas - Dx Sep 2012

Post by Olga »

"I was told without a biopsy we can't know" - with high level of probability you can not it without a biopsy but using additional canning and good reading, Deb. Ivan's all adrenal mets (3 as of now) were diagnosed without any biopsy as the shape of enlargement shows the tumor, and if the MRI is done it shows the malignancy of some sort. It can not be proven these tumors were ASPS but given the clinical history it was almost certain - and really it does not matter what type of tumor it was, it needed to be either resected or cryoablated (we choose a cryoablation performed by Dr.Littrup as all adrenal treatment are very tricky due to its very small size so the any invasive treatment can destroy the gland, so the goal was the treat the met and to SAVE the adrenal). Dr.Aoun or Dr.Littrup will read the scans additionally with their expert eyes and say if it looks like tumor or not. Adrenal mets grow faster. Also a tumor in the adrenal gland may contribute to the overproduction of the hormones and a weight loss, ask for the referral to the endocrinologist - it may give Josh a lever to ask for the out of town cryo being covered by the insurance (if they refuse) if it is needed to aid to increase the weight which is needed to be qualified for clinical trials and overall quality of life improvement.
Olga
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Thanks Olga
That's what Josh and I were talking about on our ride back : /
Also Bonni thank you so much for your prior note
It was like a hug from afar !
Debbie
jenhy168
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Re: Josh from Kansas - Dx Sep 2012

Post by jenhy168 »

Hi Debbie,

Is Josh's weight loss attributed to a decreased appetite? He was 130-140 before,right?
I'm experiencing similar weight loss even though I try to eat as much as I can too. I'm 5'3 and Ive gone down from 104 a year ago to 94 (1 mo ago) to 92 (yesterday). :(

I wonder what's a good way to gain healthy weight.

~Jen
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Hi Jen

130 ish most of his adult life :roll:
Weight loss when a patient has cancer is generally speculative to the cause.

Cachexia is used conveniently as far as I'm concerned . Let's just default to a reason of tumor load :|

We will address the adrenal gland in hopes that Joshuas appetite picks up
Also being off sutent will be is a huge help as his severe cough and chest pains have helped to eliminate some meds that caused issues of depressed appetite as well as a fractured rib from coughing.

Duncan donuts is becoming our friend and extra oils / creams/ in cooking
Got to eat first though :cry:

Add very little activities till food in and food out becomes habit once again

Hope this helps
Love
Deb
Last edited by D.ap on Wed Apr 13, 2016 10:52 am, edited 1 time in total.
Debbie
Bonni Hess
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Re: Josh from Kansas - Dx Sep 2012

Post by Bonni Hess »

Hello again dear Debbie,
My heart is breaking for the additional concerns that you are now dealing with regarding Josh's adrenal gland. As always, I would be very cautious/resistant about proceeding with a biopsy because of the known risk of possibly seeding tumor cells with an invasive biopsy, and I strongly agree with Olga's wise insights and advice based on Ivan's anecdotal experience with adrenal gland mets. I understand that Josh is probably ineligible for systemic treatment with Cediranib until his brain mets have been resected/treated because of the dangerous risk of TKI associated cerebral hemorrhage (although perplexingly this was not a disqualifying factor with Prairie being allowed to begin the NIH Cediranib Clinical Trial even though her multiple brain mets were all larger than Josh's newly diagnosed ones) However, I am still wondering why resection or Gamma Knife are not being pursued for Josh's two new brain mets instead of the stereotactic radiation treatment , and also why once the two mets are resected/treated, why you have abandoned the Cediranib treatment plans and are instead pursuing PDL-1 which Josh is apparently not eligible for due to his previous Sutent treatment? I know that these are all difficult treatment decisions, and that time is of the essence due to Josh's disease progression, but it is important to weigh all of the treatment options based on the best currently available data and documented anecdotal treatment results. I agree with Olga's recommendation for you to seek an opinion from Dr. Littrup or Dr.Aoun regarding the adrenal gland tumor concern which certainly needs to be assessed and addressed as soon as possible. Take care, stay strong, and know that dear Josh, Meg, you, and your family are all held very close in my heart and my most caring thoughts dear Debbie, and that I am always here for you to try to help in any way that I can with shared information, input, and support.
Heart to heart with deepest caring, healing wishes for dear Josh, much love, and continued Hope,
Bonni
jenhy168
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Re: Josh from Kansas - Dx Sep 2012

Post by jenhy168 »

I didn't even know there was the term Cachexia. Wikipedia said that it can't be reversed nutritionally....So I guess eating more doesn't even help? :(
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Jen

Best description

http://www.ncbi.nlm.nih.gov/pmc/article ... 48525title

In summary, based on current views on the cachexia syndrome in cancer patients, we put forward the following recommendations:

Wasting is a predictable event in many cancer patients, readily diagnosed by assessment of weight, change in appetite, and food intake. Often these patients will also have anemia and low albumin, with a concomitant increase in C-reactive protein. The above simple assessments should form a consistent part of the record of all advanced cancer patients.
Use a systematic formal guide to rule out treatable secondary causes of wasting.
At the onset and throughout the course of illness, offer patients nutritional counseling (they should have access to a nutrition team with a special interest in wasting disorders), encourage them to take part in a rehabilitation program tailor made for their needs and abilities, and consider the use of specific nutraceutical and pharmacologic interventions. Follow-up visits should not only note careful evaluation of antitumor therapy and tumor volume, but also regular assessment of symptom control, weight, appetite, and function.
Take careful note of the full medication profile of patients who are wasting. These might include drugs that could have a favorable effect on cachexia (cardiac agents such as the statins, ACE inhibitors) and other agents that may be deleterious (e.g. herbal medications laced with corticosteroids).
Testosterone status should be established in cancer patients with the cachexia syndrome. If clearly reduced, physiologic testosterone supplementation should be considered after discussion with the patient.
Patients must be assured of a reasonable intake of amino acids. Protein-containing foods are indicated and rich sources of both essential and nonessential amino acids will support any anabolic potential.
Clinical researchers should be more cognizant of the work of their colleagues in sports medicine, AIDS, and geriatrics. Learning from their enterprises, further studies on creatine and supraphysiologic amounts of amino acids with a particular role in protein synthesis should be conducted. Similarly, the role of supraphysiologic doses of anabolic agents, in combination with nutrients and compounds that control muscle proteolysis, should receive high priority.
There are few, if any, negative exercise trials. Patients should be encouraged to keep active or take part in tailored exercise programs, and studies on nutritional and pharmacologic agents should incorporate the potential additive effects of exercise.
Debbie
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Don't be discouraged in other words
Love to you always
Deb. Night and hugs.
Debbie
Olga
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Re: Josh from Kansas - Dx Sep 2012

Post by Olga »

Deb, do more research re. currently recommended doses for the radiotherapy resistant sarcoma brain metastases. 3 times (with the breaks) 10 gray is not equal to 1 time 30.
Olga
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

:cry: It's equal to a rad unit ? An equation of volume and exposure equation according to Josh :roll:

Will consider Thanks for the suggestion: )
Night
Our love to all, always
Debbie
Debbie
Olga
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Re: Josh from Kansas - Dx Sep 2012

Post by Olga »

Despite 10+10+10=30 i.e. the cumulative dose delivered to the given volume is the same, its biological impact and efficacy are very different. ASPS is a very slowly dividing tumor so the goal is not to affect its reproduction but to burn it in place, so more drs prefer higher single-fraction treatment versus fractionated radiosurgery when the same dose is divided in 3-5 treatments.
as per the following article:
The impact of radiosurgery fractionation and tumor radiobiology on the local control of brain metastases.
http://www.ncbi.nlm.nih.gov/pubmed/24010977
Olga
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Thank you Olga
We had 2 of the three respond to the fractional last year thus far
The 13 mm certainly did not and has thus far been subdued for almost a year ( in April :) ) by virtue of LITT

http://www.cureasps.org/forum/viewtopic ... 1031#p7907

Knock on wood :roll:
I'll forward to our radiology oncologist
Thank you again
Love
Debbie
Debbie
Bonni Hess
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Re: Josh from Kansas - Dx Sep 2012

Post by Bonni Hess »

Dear Debbie, Is there a reason why Josh's radiologist isn't using a higher dose single fraction Gamma Knife treatment to treat Josh's brain mets instead of the fractionated multi treatment radiosurgery which could be less effective? Thinking of Josh, you, and your family with special caring thoughts, healing wishes, love, and continued Hope, Bonni
D.ap
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Re: Josh from Kansas - Dx Sep 2012

Post by D.ap »

Hi all
With the SRS treatment we will be taking Temador after the 3 fractions as there is a possible tumor that will be left and untreated
Bonni the reason we are going the 3 fraction route is it can be performed immediately and the gamma knife process is very slow

We have submitted the paper work to KUs medical board on the event we need to follow up with an additional treatment .

We will be be seeing an Endocrinologist after the treatments are behind us
Debbie
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