Jen from California - Dx 2009

[Olga]

Yes, ask the radiologist to compare the recent abdominal CT to that a year ago and verify if this is the same spot. May be the oncologist would change his mind, but still - there is an urgent problem with the lung mets. There is some interesting moment with the liver met. There is a theory that ablating it prior of the immunotherapy treatments may increase the immune system response (unconfirmed).

[Bonni Hess]

Dear Jen, I continue to personally feel that your liver met should be addressed and treated prior to you beginning a Clinical Trial systemic treatment which, as Olga wisely pointed out, may prohibit any other kind of treatment during the time that you are on the Trial. I personally don't understand any doctor's "wait and see" approach with a metastatic disease like ASPS because they are just waiting to see if the suspected met grows, and then if it does grow as it unfortunately usually will with ASPS, the met may have grown too large to successfully resect or ablate! It seems that if there is any kind of abnormal lesion in the body, it should be removed or treated whether it is an ASPS met or not because it obviously does not belong there. If your doctor continues to refuse treatment for the suspected met, I think that a second opinion is definitely needed. Thinking of you with special caring thoughts, healing wishes, and continued Hope, Bonni

[jenhy168]

treatment plan:
My onco tried to get me a spot on two clinical trials, but they both were not accepting anymore sarcoma patients.

So I'm left with the option to keep trying Vandetanib and try it in combination with Opdivo again. (Note I only tried Opdivo for 3 months last year). Will await for approval for this drug to start probably after the new year.

I'm kind of running out of options in terms of trying new drugs since I've tried many and most.
--
liver:
I'm asking my onco again about the liver again via email. Not sure what he'll say but he seemed pretty adamant about wait and see when I talked to him during my clinic visit. I guess the worst case scenario is wait 3 mos and have an abdominal pelvis MRI done to see what they see.
---
Had a full body bone scan done. The tech saw something something light up in the scan that wasn't there before on my right front side...so we'll see what that is if it's anything...=/ Hopefully results will come out tomorrow. I hate the wait...

[D.ap]

Hi Jen

I'm sorry your onc wasn't able to connect you to a trial with your visit.

However, I hope you got answers on you bone scan .

Thinking of you today.
Love
Debbie

[Bonni Hess]

Dear Jen, I am so sorry that you are unable to get on either of the 2 systemic treatment Clinical Trials that you were pursuing, but am grateful that you have another possible option with a return to Opdivo used in combination with Vandetanib. I Hope that you have now received a clarification about the right front abdominal bone scan enhancement concern, and that it has been determined to be of a benign nature. I personally think that your oncologist should be willing to honor your request for more pro-active action for your suspected liver lesion, and if he continues to refuse and insist on the wait and see approach, I would definitely seek a second opinion from a different oncologist. Take care dear Jen, have a beautiful Christmas, and keep in touch as you are able. With special caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Happy new year everyone.

I'm restarting Opdivo on Monday. I had tried it previously in late 2015 for about 3 months. I will be on Opdivo and vandetanib concurrently.

Hopefully it works...

[Bonni Hess]

Dear Jen,
My very best wishes and most positive thoughts are with you for very good success with your new Opdivo (Nivolumab) and Vandetanib combination treatment. Is your oncologist basing his treatment recommendation on any specific rationale or documented data showing successful results of disease stabilization and tumor shrinkage/disappearance for ASPS patients on this combination treatment regimen, or are you a pioneer in the testing of this particular drug combination? Prior to beginning this new treatment I think that it will be very important for you to discuss with your oncologist the recently published concerns which Debbie and Olga have thankfully shared regarding the risk of acute serious side effects with Immunotherapy drug treatment both in Clinical Trials and with off label use. We all have such high Hopes for these promising new Immunotherapy drugs, but they are so new that they are still really in the experimental stage even if they have been FDA approved, and the possible risks and long term side effects are still being found. This new concern of possible acute and dangerous side effects certainly adds to the difficulty of making treatment decisions regarding Immunotherapy treatment, but it is essential to be as informed and knowledgeable as possible. If you do move forward with the combination Opdivo/Vandetanib treatment, please be aware of the risks and symptoms of the acute side effects and contact your doctor and/or seek medical treatment immediately as Olga has wisely advised. Take care dear Jen and keep in touch as you are able.
With concern, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[jenhy168]

Hi Bonni,
Do you know if the content of the article of risks and dangerous side effects was discussed at the sarcoma conference in Portugal?

Yes I'd be a pioneer in this combination of treatment.

[D.ap]

Jen

It is my understanding that there will be a video available at some point for us to view from the conference.

Wanted to let you know that it is my understanding that combination usages, anti PD1 meds plus additional targeted meds increase the likelihood of autoimmune reactions. Both can create autoimmune responsive.

My daughter in law reminded me we visited about this scenario back in December with our oncologists as we had some suspition of Josh having the beginnings of MS. It appears that Anti PD1 drugs can exacerbate autoimmune diseases.

Its always good for you to discuss these possible issues with your oncologist.

[Bonni Hess]

Dear Jen,
I assume the article regarding the possible acute side effects associated with Immunotherapy treatment was not addressed at the 2016 CTOS Conference in Portugal because the Conference was held the weekend of November 11, 2016 and the article was just published December 3rd, 2016. It appears that these concerning serious Immunotherapy side effects have just recently been discovered since Immunotherapy treatment is still in its infancy with no long term data yet available. I would encourage you to contact Dr. Breelyn Wilky at the University of Miami Sylvester Comprehensive Cancer Center to try to obtain more information about these concerning developments. I think it is imperative that you do as much research as possible and then discuss the issue with your oncologist before deciding to proceed with the combination Immunotherapy therapy which he has advocated. Also, since you said you are a pioneer in the use of the proposed Opdivo/Vandetanib treatment, I Hope that your oncologist has justified his recommendation of this treatment for you with some rational and knowledgeable basis for his recommendation instead of just taking a stab in the dark at something that apparently has no proven effectiveness for ASPS since you are a pioneer in its use. I know that we are all desperate to find an effective treatment for this insidious disease, and Hopefully some day soon a permanent cure, but treatment decisions should be made on the basis of documented ASPS treatment success, and as much knowledge as is currently available on the possible risks associated with the treatment.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Hi Bonni,
Do you know if the content of the article of risks and dangerous side effects was discussed at the sarcoma conference in Portugal?

Yes I'd be a pioneer in this combination of treatment.

Jen
Do you know the dosage yet of the two meds ?
Also was your primary that was removed shown to be by the pathologists report a low or high mitopic rate ?
You noticed the tumor at 17 years of age but surgery and Dx wasn't performed / dx till 24 years old and lungs only involvement thus far in 2013

[jenhy168]

I don't know the exact dosage of opdivo yet, and I'd have to check what the dosage that I take for vandetanib. I can't remember, all I know is that it's two pills/day.

I will ask my onco for his rationale for the recommendation of this combination since I'll be the first to try. I don't know if the primary that was removed showed low or high mitopic rate. Is low or high better for opdivo?

[D.ap]

Jen
I'd be interested to know what it was your first go around with Opdivo..the dosage

Here's a couple links to look at-

The cell cycle

http://www.cancer.ca/en/cancer-informat ... ?region=on


Prophase

Metaphase

Anaphase

Telophase

Mitosis
• The cell divides into 2 new cells, which occurs in 4 stages (prophase, metaphase, anaphase and telophase).
• The mitosis phase lasts about 1–3 hours.

After mitosis, a cell either re-enters the G1 phase or goes into the resting phase (G0) where it may later re-enter the cell cycle.



Read more: http://www.cancer.ca/en/cancer-informat ... z4WFL0Wime
mitotic rate

mi·tot·ic rate

the proportion of cells in a tissue that are undergoing mitosis, expressed as a mitotic index or, roughly, as the number of cells in mitosis in each microscopic high-power field in tissue sections

Miotic Rate - Pathology report ?

https://www.melanoma.org/find-support/p ... ogy-report

Joshua's was 6/10 on his primary path report which is considered high.

A lot of the ASPS path reports show low values and I believe a lot of write-ups state that ASPS patients generally have a low value as tumors generally grow slow.
I believe there was a suggestion of a second type of ASPS variety at one time?
MSI is used in a some clinical trials as prerequisite to folks being allowed in.. I'm trying to understand if the mitotic rate and the microsatellite instability are connected?

[Olga]

I do not know if there is any relevance of mitotic rate to an expected efficacy of the proposed regimen (probably not or no info) and I am not sure why it is discussed here, if it is interesting or thought to be relevant to Opdivo or ICI in general it could be discussed in the appropriate forum. Mitotic rate affects the efficacy of the traditional cytotoxic chemotherapy .

There is a searchable PDF of the abstracts presented at the CTOS 2016 https://www.ctos.org/Portals/0/PDF/CTOS ... m_Full.pdf I searched and can not find anything re. side effects or toxicities of the immune checkpoint inhibitors.
I also searched the web for the combination trials of Opdivo (nivolumab) plus vandetanib in any other diseases and could not find any but found that there were some trials of the nivolumab plus sunitinib or pazopanib (other TKI drugs) with some signs of the increased efficacy but you need to read more and the toxicity profile of the vandetanib could be different from sunitinib or pazopanib?

[jenhy168]

Jen
I'd be interested to know what it was your first go around with Opdivo..

Here's a couple links to look at-

The cell cycle

http://www.cancer.ca/en/cancer-informat ... ?region=on


Prophase

Metaphase

Anaphase

Telophase

Mitosis
• The cell divides into 2 new cells, which occurs in 4 stages (prophase, metaphase, anaphase and telophase).
• The mitosis phase lasts about 1–3 hours.

After mitosis, a cell either re-enters the G1 phase or goes into the resting phase (G0) where it may later re-enter the cell cycle.



Read more: http://www.cancer.ca/en/cancer-informat ... z4WFL0Wime
mitotic rate

mi·tot·ic rate

the proportion of cells in a tissue that are undergoing mitosis, expressed as a mitotic index or, roughly, as the number of cells in mitosis in each microscopic high-power field in tissue sections

Miotic Rate - Pathology report ?

https://www.melanoma.org/find-support/p ... ogy-report

Joshua's was 6/10 on his primary path report which is considered high.

A lot of the ASPS path reports show low values and I believe a lot of write-ups state that ASPS patients generally have a low value as tumors generally grow slow.
I believe there was a suggestion of a second type of ASPS variety at one time?
MSI is used in a some clinical trials as prerequisite to folks being allowed in.. I'm trying to understand if the mitotic rate and the microsatellite instability are connected?

Thanks Debbie, this brings me back to my biology days in high school.