Nhi from NY - Dx June 2016

[ntran727]

Hi everyone,

Just wanted to give an update.

So finally all the radiation side effects were improving and I was able to wean off the steroids around my birthday (end of July). I started back on Pazopanib at a lower dose of 200mg because the higher dose gave me the same sort of symptoms (muscle/bone aches, feverish feeling, chills, a very mild version of what I felt when I was hospitalized). I played around with it for a few days until I was able to tolerate the 400mg daily dosing. Interestingly, the only side effect I have now aside from white hair is migratory joint pains which I think may be from the immunotherapy that’s left in me since I never had joint pain before while taking it. I had pretty severe left knee pain that felt hot and swollen for 2 days then it went to my right knee, randomly to my hand joints, toes, etc. I have also had pretty constant lower back pain/stiffness but midline this time instead of off to the right before I had SBRT to the right iliac bone met. I was able to recover full function of my tongue about a week or 2 after gamma knife. The headache I had I realized was actually from TMJ secondary to me chewing weird from the tongue dysfunction because my neurosurgeon didn’t think the area of my headache correlated with where my tumors were. I had stabbing ear pain radiating to my temple and neck, and when my jaw started getting stiff and hurting, that’s when I realized it. I took ibuprofen, stayed on a soft diet to rest my jaw and the headaches resolved. Slowly my energy levels came back and labs all normalized with LFTs and all minus my low WBC and neutrophil count which is always low on TKIs.

I had scans last week (MRI abdomen/pelvis and brain and CT chest) which all showed stable Mets with a slightly enlarged right iliac met. However when I sat down to look at the scans with my radiation oncologist, it looked about the same and maybe inflamed from the SBRT. I don’t have pain there anymore so I assume it to be inactive. They only mentioned my L4 met this time in the spine which is the same size 1.7 x 1.9cm. When looking at the scans, there seems to be some L5 involvement that looked more subtle than the last scan in which it was mentioned. I am not sure of the size but it looked very small. We couldn’t find the S1 lesion but my radiation oncologist sees some very small tumor fragments in the area which said said was scattered in the vicinity (I couldn’t see them when I looked). They also mentioned a T12 lesion 0.8cm that wasn’t mentioned previously but I remember seeing it on prior images so it has probably been there for the same amount of time as the other bone Mets.

Currently my oncologist still wants to hold off on immunotherapy for some time as my disease is stable to let my body recover. He thinks the joint pain I have is due to the immunotherapy and not really the pazopanib. I think there may be some interaction and hopefully some synergistic effects between the pazopanib and keytruda which was not triggered until after the SBRT. I hope what I am feeling in my back is tumor pain from it working.

I am moving to CA next week and will have some lapse of care until I start my new job October 7th. In the mean time I will continue to take Pazopanib 400mg daily. The medication is very tolerable compared to Sutent and I don’t have any side effects besides the joint pain and white hair. The nausea and diarrhea was mostly from the radiation I think since that resolved also. Once I establish care, I will look into getting my L4 treated with maybe Cryo or SBRT or just watch it since it’s not growing despite my back pain in the area. I guess the next scans will show me the way.

I am incredibly saddened to hear of Jussi’s death and want to say a prayer for him here and for all of us. May we all remember to be strong, proactive and courageous just like Jussi in battling this disease.


Love to all,

Nhi

[Olga]

Nhi,
thank you for the very detailed update. The symptoms of joint arthritis you are having are pretty consistent with the immunotherapy side effects and are the positive predicting sign that the immunotherapy is/was working for you and I am not sure why you choose to stay on pazopanib but discontinued immunotherapy, since most of your side effects could be traced to and attributed to the different treatments toxicities not to keytruda. Also restarting immunotherapy after the irAEs could be done at a half dose as well as some people are very sensitive to immuno checkpoint inhibitors and do very well on a reduced dose. Usually the immunotherapy is restarted after the toxicities are managed and especially seen that it is active in your case. The rheumatologist consultation could be also of use.
There is a new ICI toxicities management guide https://drive.google.com/file/d/1kyeflB ... sp=sharing

[ntran727]

Hi Olga,

Sorry for the delayed response. There was a lot going on since we moved to California and had to get settled in. I agree with you that the arthritis symptoms seem to be immunotherapy related. My oncologist also thinks so. Both he and I want to resume the immunotherapy, but he wants to delay it longer than needed I feel. And since I won’t be insured for a month plus will be on a very different insurance type that I have to wait for work to start in order to be able to figure out which oncologist I will even see next. It was too late to give me another infusion before I left NY, so there was not much time to give me a long enough break from the immunotherapy. My plan will be to discuss that at my first visit. In terms of the joint pains, they are mostly gone now with the exception of a stiff back. I am losing a lot of hair still and the hairs come in super white compared to Sutent. And I notice myself getting a lot paler. Other than that, there are barely any other side effects.

[D.ap]

Hello Nhi

It’s good to hear that you are close to being settled into your new home. : )

In looking at TKIs and their side affects , Nilotinib has been documented with the hair loss as well.
It along with hair color changes , are part of an inflammatory response is what the article is explaining .

https://jamanetwork.com/journals/jamade ... le/1670782

[Bonni Hess]

Welcome to your new Home in California dear Nhi, and thank you for somehow finding/making the time to update this Board. I am humbled by your ability and energy to make so many major Life transitions while continuing to courageously battle your ASPS. I Hope that you have been able to find a good ,knowledgeable, and experienced Sarcoma oncologist in the area where you have moved, and will very soon be able to begin your care with him/her. In the meantime, I Hope that you and your family are adjusting well to California Living and enjoying your new location and Home. .I will look forward to your next update when your time and very busy schedule allow, and am holding VERY tight to Hope for good news of treatment success and stable disease. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[ntran727]

Hi everyone,

It has been a while since I posted an update.

Since I moved to California in October, my new oncologist and I decided after reviewing my records that it was safer for me to continue with Votrient since I had some grade 3 toxicities from the immunotherapy (Keytruda). Since my scans were mostly stable, I felt comfortable with that. I have had a total of 3 scans since October, all with very subtle changes, like 1mm growth of 4 of my lung Mets (largest is 7mm), and some new punctate lesions in some of my thoracic vertebrae. The bone Mets treated with SBRT and gamma knife (Right iliac and 2 skull lesions) have all been stable in size with a little shrinkage. I have numerous bone Mets mostly involving my thoracic and lumbosacral spine, T12, L4, L5, S2, right iliac, Manubrium and Sternum bones are where they are seen, all ranging between 8mm to 2cm in size. The tiny spots are seen in T5, T6, right scapula, both femurs, so I’m sure they’re bone Mets but just too small to measure. Lung Mets have not increased in quantity but a few went from 6 to 7mm. My oncologist still has not referred me to a sarcoma specialist or spoke with my previous oncologist because the scans have been “stable.” I was getting worried seeing these very small changes but decided to wait until these most recent scans to see if there are significant changes so I can ask to be referred.

The past few months I have been having more right lower back pain with sciatica symptoms all the way down my right leg and foot. I knew something was growing. Got scans last week to confirm that I had growth in 4 bone Mets, Manubrium, T12, L5 and S2. The T12 and S2 grew by about 1cm so pretty significant. My L4 spine met has been fractured (the top of the vertebrae collapsed in a little) so I thought this may have been the cause of my pain, but the lesion was actually stable in size and unchanged, so we think it may be the S2 lesion causing the pain.

I met with my oncologist and discussed options. She plans to refer me to a sarcoma specialist, Dr. Ming-gui Pan. He is the chair of the sarcoma department for Kaiser Permanente in the Northern California region, so he seems promising. I did get a few recommendations from Dr. Wilkey for sarcoma specialists at Stanford but I would have to make a case to use their out of network coverage which may be difficult right now, so I will see how it goes with the sarcoma specialist from Kaiser first. I am also going to meet with the radiosurgery and radiation oncology team to see how to best treat these bone Mets in my spine. Then we will have to change treatments, likely to try immunotherapy again. It will be risky based on my past reactions when I had all these treatments with TKI + Keytruda + radiation so we have to figure out the best sequence to get it done safely. I think I would respond better to a TKI + Immunotherapy combination like Keytruda + Axitinib since I had pretty significant rebound growth when I switched to Keytruda and stopped the Sutent. I was also thinking to increase the Votrient dose from 400mg to 600mg or 800mg while waiting for the next treatment option since most patients are taking 800mg, as long as I can tolerate it.

If anyone has any suggestions in terms of the treatment plan in regards to the sequence or meds or combo of meds, please let me know so I can bring it up at the first meeting with the sarcoma specialist. Hope everyone is doing well and staying safe with this coronavirus pandemic.


Nhi

[D.ap]

August 2019

Hi everyone,

Just wanted to give an update.

So finally all the radiation side effects were improving and I was able to wean off the steroids around my birthday (end of July). I started back on Pazopanib at a lower dose of 200mg because the higher dose gave me the same sort of symptoms (muscle/bone aches, feverish feeling, chills, a very mild version of what I felt when I was hospitalized). I played around with it for a few days until I was able to tolerate the 400mg daily dosing. Interestingly, the only side effect I have now aside from white hair is migratory joint pains which I think may be from the immunotherapy that’s left in me since I never had joint pain before while taking it. I had pretty severe left knee pain that felt hot and swollen for 2 days then it went to my right knee, randomly to my hand joints, toes, etc. I have also had pretty constant lower back pain/stiffness but midline this time instead of off to the right before I had SBRT to the right iliac bone met. I was able to recover full function of my tongue about a week or 2 after gamma knife. The headache I had I realized was actually from TMJ secondary to me chewing weird from the tongue dysfunction because my neurosurgeon didn’t think the area of my headache correlated with where my tumors were. I had stabbing ear pain radiating to my temple and neck, and when my jaw started getting stiff and hurting, that’s when I realized it. I took ibuprofen, stayed on a soft diet to rest my jaw and the headaches resolved. Slowly my energy levels came back and labs all normalized with LFTs and all minus my low WBC and neutrophil count which is always low on TKIs.

I had scans last week (MRI abdomen/pelvis and brain and CT chest) which all showed stable Mets with a slightly enlarged right iliac met. However when I sat down to look at the scans with my radiation oncologist, it looked about the same and maybe inflamed from the SBRT. I don’t have pain there anymore so I assume it to be inactive. They only mentioned my L4 met this time in the spine which is the same size 1.7 x 1.9cm. When looking at the scans, there seems to be some L5 involvement that looked more subtle than the last scan in which it was mentioned. I am not sure of the size but it looked very small. We couldn’t find the S1 lesion but my radiation oncologist sees some very small tumor fragments in the area which said said was scattered in the vicinity (I couldn’t see them when I looked). They also mentioned a T12 lesion 0.8cm that wasn’t mentioned previously but I remember seeing it on prior images so it has probably been there for the same amount of time as the other bone Mets.

Currently my oncologist still wants to hold off on immunotherapy for some time as my disease is stable to let my body recover. He thinks the joint pain I have is due to the immunotherapy and not really the pazopanib. I think there may be some interaction and hopefully some synergistic effects between the pazopanib and keytruda which was not triggered until after the SBRT. I hope what I am feeling in my back is tumor pain from it working.

I am moving to CA next week and will have some lapse of care until I start my new job October 7th. In the mean time I will continue to take Pazopanib 400mg daily. The medication is very tolerable compared to Sutent and I don’t have any side effects besides the joint pain and white hair. The nausea and diarrhea was mostly from the radiation I think since that resolved also. Once I establish care, I will look into getting my L4 treated with maybe Cryo or SBRT or just watch it since it’s not growing despite my back pain in the area. I guess the next scans will show me the way.

I am incredibly saddened to hear of Jussi’s death and want to say a prayer for him here and for all of us. May we all remember to be strong, proactive and courageous just like Jussi in battling this disease.


Love to all,

Nhi

Hi Nhi ,
I’m sorry to hear of the spine progression and pain.
I’m trying to recollect what’s transpired since your move to California .😊
It sounds like it’s time to step up your game plan with the 1cm met?
Are you keeping Dr.Schwartz and Dr. Tapp,in your treatment loop? Cc’d?
How are your thyroid levels and how is your sleep going?
Love to you .

[Olga]

Hi Nhi,
I am sorry to hear re. progression. We also had the situation when Ivan mets were described as stable for half a year before all of the sudden it was said there is an interval growth - the reporting is not accurate, since then he reads his own CT scans.

I am not sure why are you thinking to keep TKI if you are obviously developed resistance to it (an interval growth signifies that). It is pretty possible that your adverse reaction was to a combination of the drugs and this time if you resume the Keytruda alone, it may not even happen anymore. Sometimes even simply stopping ICI drugs and waiting things out makes it safe to resume, half of the patients get no autoimmune side effects at all the second time. You can consult with the radiologists re. finding the less risky located met to treat simultaneously with Keytruda.
Last time there also was significant hormonal changes interaction so you have no idea if any adverse reaction will happen this time.
Ivan also found some interesting clinical trials recently, I will have to ask him about it again, will post

[D.ap]

Nhi - I think it is a very alarming development. Ask the oncologist to contact Dr.Wilky from the ASPS clinical trial in Miami and ask her if there were any good results with the bone/spine mets on the Keytruda trial. Also there are few other ICI trials going on incl. atezolizumab for ASPS - may be the oncologist could find out what trial might be more promising for the bone mets. We need the inside information.
In the meantime ask him to consult re. possible radiosurgery. If he could get Keytruda off label as Ivan is getting or Opdivo as Josh is getting, it would be beneficial to combine one of the Keytruda or Opdivo treatments with the radiosurgery. May be there are promising combination treatments that aim to potentiate ICI efficacy. If you go on a clinical trial, you can try to treat one bone met before starting the trial.
If the iliac bone met is small, it might be treated with the cryosurgery as well.
Also might be make sense to start bisphosphonates to try to slow down the bone mets growth?
Although I do not know about possible ICI and bisphosphonates interaction, even after a single shot they stay in the system for a very long time

Hi Nhi
Reading back through you posts, March 2019, we you able to talk to anyone above about bone met successes with ICIs?
I've seen success with Atezolamumab in treating ASPS patients, with spine mets.
Dr. Razak? at Princess Margarets?, in Canada might be a resource and someone to consult?

[ntran727]

Thank you for the response Olga. I have been reading my own scans and they have been unchanged except for those subtle changes that I stated with 1mm growth and a few new punctate spots. Then between January to now is when the growth took off mainly for the L5, T12 and S2 lesions, about 1cm growth which is significant enough to cause pain. I do think that the TKIs are working for me but I’ve never been on the full dose of any of them, due to not being able to tolerate side effects. I am worried because when I did come off the TKI and was on Keytruda alone, my mets grew a lot, probably due to some rebound growth, and yes also with me getting pregnant and not doing radiation with the Keytruda to begin with. My oncologist wants to do Keytruda with the radiation and does not think I should do TKI + radiation + Keytruda like I did last time. I will probably continue Votrient at increased dose until I get the first Keytruda infusion and then maybe stop the TKI before I do the radiation, then see how I respond. We can add Axitinib to continue with Keytruda later if needed since that combo has been studied and is probably safer than Votrient + Keytruda. Let me know your thoughts.

In regards to the trials, I do not qualify as I only have bone Mets + lung Mets. The bone Mets are not measurable, therefore they do not enroll these patients. The Lung Mets count but are all <1cm in size so does not meet that criteria. I would need some organ related Mets that are >1cm in size. I will ask re: successful treatments for bone Mets to see if I can get the drugs off label. Would also be interested to see what Ivan found for new trials as well even though I won’t be able to access any new drugs that are not TKIs or ICIs until they are used longer.
.

[Olga]

Discussed with Iban re. trial. He was suggesting Tvec (Talimogene laherparepvec) but you need to have a subcutaneous lesion to inject it intra tumor.
The plan to continue TKI pre. ICI+radiosurgery sounds good, but you also need to take care of your blood work to have more chances for success. What are your numbers? L, N, LNR?

[ntran727]

I will look into the trial as it sounds interesting but seems like I won’t qualify for any trials due to having only bone Mets and lung Mets that are too small. My LNR has been mostly <2, most recent labs show a ratio of 1 exactly, looks like my lymphocytes has been steadily increasing through the months, and neutrophils are also low due to being on the TKI. I’ve always had a low LNR though pre and post treatment except for after the hospitalization when I was on steroids which gives a high neutrophil count in general. Will post more updates once I meet with all the new doctors.

[ntran727]

I heard back from both Dr. Wilky and Dr. Schwartz, my prior oncologist who both recommended the pembrolizumab + axitinib combo if I can obtain it. Dr. Wilky did say there was some good response with bone Mets from that trial. I wish my insurance would let me get a second opinion outside of Kaiser, but it’s tricky with them so I will see if I can obtain those meds.

[D.ap]

Hello Nhi
Why is a second opinion not an option , with the insurance company ? Is it spelled out in the phrasing of your plan policy ?
It would seem to me with your dissemination locations , that several type of docs could be included in the network of consults as well as ASPS being of a rare sarcoma and in need of more opinions ?
If it’s a matter of “ not in network “
some docs will accept the insurance pay out ,as their billing and final cost to the insurance co.
I’m sure not suggesting you discount Dr.Wilky and Dr.Schwartz’s opinions but especially in the scheduling of bone met treatments , it wouldn’t hurt to have a second opinion . IMHO😏

[D.ap]

Nhi
You caught Johannes post ?



viewtopic.php?p=14786#p14786
Johannes wife Elisa, has ASPS.
http://www.cureasps.org/forum/viewtopic ... 1856#p1856