Jen from California - Dx 2009

[jenhy168]

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?

I will need to ask my doctor regarding toxicity profile.
I've been on both sunitinib and pazopanib...and the reason why I think we are choosing to combine vandetanib with the opdivo is because vandetanib is the one i've been most recently taking. I had some limited success with vandetanib for 6 months, as did I with sutent and votrient. So I'm sure I could technically try opdivo with either sutent, votrient or vandetanib, but then I have to go through the process of obtaining access to these drugs. I probably have the option of taking opdivo without vandetanib, but I think my onco thinks that the combination may be more effective... Either way I'll ask rationale.

[jenhy168]

On another note, how bad do you all really think sugar is for our diet? It's such a hard habit to kick, especially since juices have lots of sugar...

[Bonni Hess]

Dear Jen,
I am grateful that you are going to discuss the rationale for the recommendation of the Opdivo/Vandetanib combination treatment with your oncologist as it is extremely important that you be as well informed as possible before beginning any kind of treatment. You have a right and a responsibility to know on what basis a specific treatment is being recommended so that you can make the most informed decision possible about the treatment before agreeing to subject your body to it. Although ASPS is typically an indolent disease, patients do not have the luxury of the time required and the toll on the body to try unproven treatments which may or may not be effective or successful. Since recent data seems to indicate that TKI treatments combined with Immune Checkpoint Inhibitors may be more effective than when used alone, perhaps that is the rationale for your oncologist's recommendation, but I again question whether there is any specific data to support his recommendation for the use of Vandetanib with Opdivo? Has Vandetanib itself shown any success for ASPS patients other than the "limited success" which you had for six months?
Regarding your question about "how bad do you all really think sugar is for our diet?", there have been many (sometimes heated) discussions on this Board about the possible effect of diet on ASPS (and cancer in general), but I have personally never read any data which substantiates the claims that diet can help cure cancer. If only it were that easy!! Of course, it is always important to try to maintain a healthy diet whether or not a person has cancer. Brittany does not adhere to any specific diet nor does she severely limit her sugar intake other than trying to eat sensibly to maintain her weight and cute young figure . She also does not take any naturopathic nutritional supplements as is advocated/done by many ASPS and cancer patients, because we have always felt (and there is some data that supports our theory) that nutritional supplements not only strengthen the normal cells, they can also strengthen the cancer cells. Unfortunately, as with everything with this insidious disease, there don't seem to be any definitive answers regarding treatments, diet, etc. so all we can do is continue to actively research, network, communicate, and share information and treatment experiences with other ASPS Community members, and remain as pro-active and knowledgeable as possible.
With special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[D.ap]

On another note, how bad do you all really think sugar is for our diet? It's such a hard habit to kick, especially since juices have lots of sugar...

Hi Jen
Been dealing with broken frozen pipes
You have a low blood sugar issue any shape or form ?
Be honest as this is a possible beginning of pancreas issue as I understand it.
Sugar is a good form in its purest form but if organs aren't operating and you introduce meds , immune therapy ,it's not a good choice . But not my professional opinion

You have natural doctor to talk to ?
Night
Love to you

Debbie <3

[D.ap]

https://www.google.com/search?client=sa ... =375&bih=5
Ok love to you
Night
Debbie

[ntran727]

Good luck with the new drug combination Jen and make sure you update us on the side effects/tolerance of the medications as you are able. Hopefully it will work! When are your next scans scheduled for?

[jenhy168]

Hi guys,

I've received the opdivo infusion 3 times now. (Infusion every other week) So far I feel not bad on it with the combo of Vandetanib. I still have my cough and the only other changes is increased skin rash/ itchiness and tiredness.

Received my Brain MRI scan results and all 3 nodules that were irradiated are stable. So that's good news.

talk soon
Jen

[D.ap]

Hi Jen

Stable is good news to us all, huh ?
When and how big were treated mets in brain?
Is the liver still being followed with an extended CT and or Mri? It may be hard to do a MRI with your cough.

[jenhy168]

Yes, stable is good news. I had 2 brain lesions at about 2mm and 1 mm treated in December 2015. Another 1mm lesion treated in July 2016 I believe. All treated with SRS.

I need to do a follow up scan for my liver met in March, probably a abdominal pelvis CT with contrast. I'm dreading the scan though because I'm afraid of any possible growth / bad news...=/

[D.ap]

Hi Jen

I bet Olga and Bonni could answer but I how long smaller sea mets stay visible after being treated ?

Anyway hearing that they are stable is excellent news!

Remind us of possible pelvic issues?

I think we should all develop a google conference to be had to meditate and do yoga to get us through the preworry blues . it sucks!!

March will be 3 months from first infusion and Med ?
Is there talk of the imaging possibly showing inflammation verses reduction ?
Your next brain scan then too?

[arojussi]

Srs will almost certainly kill tumos size of 1-2 mm if done succesfully. As long as they dont grow remaining lesion is most likely just a scar.

[D.ap]

Thank you Jussi
I thought of u too but sure didn't post
Scar tissue still shows up but good, consistent radiologist know and report the difference but accurately . Always making note of stability or reduction or else .

[D.ap]

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...

Hi Jen

How's the treatment going ?
You started in January , correct ?
How are you feeling ?
Thinking of you today
Hoping all is well with you
Love
Debbie

[jenhy168]

Hi Debbie, Thanks for checking in!
I'm still on Opdivo and vandetanib. It's going alright and overall I feel okay, just increased coughing due to Opdivo. I'll have one more infusion next week then I'm going to repeat my Chest CT & Abdominal pelvis CT w/contrast the week after. Will update again when I get the results back!

[D.ap]

Hi Jen

Sounds good.
You had cough prior to treatments
Is this different type of cough ?

When Josh took sutent , tki , he developed a truly bad cough
We have scans scheduled for last week in March .
We are more on a 4 month scan schedule with lungs / extended pelvic
Hugs
Debbie