Nhi from NY - Dx June 2016

[Olga]

Its a good start for now. At least you did not get the acute allergic reaction during the infusion so you tolerate the drug overall.
The forum to start new topic is here:
viewforum.php?f=76

[D.ap]

Nhi
Thanks for the explanation .
Your description of the difference between the tki and the ICI are pretty much the consensus , as I see it .: )
Glad you are feeling better.
Love

[Bonni Hess]

Dear Nhi, Happiest CONGRATULATIONS!! on the joyous arrival of your two precious little miracles baby boy and baby girl!! I know that you must be very busy being a mommy, working, and continuing your courageous ASPS battle, so I will close for now with happiest hugs, happiest thoughts, and greatest Hope that you are having a very successful response to your Keytruda treatment with minimal negative side effects. Sharing your special joy with greatest happiness, and reaching out with healing wishes, warm friendship, and continued Hope, Bonni

[ntran727]

Hi everyone,

It's been a crazy couple of months since the birth of my twin babies on 4/19/19 via surrogacy. We were stuck in AZ for 13 days while they were in the NICU as they were born at 34 weeks and 6 days. They are healthy and beautiful and I am one happy mama.

While I was in AZ, I was experiencing increasing right lower back pain than usual, which I wasn't sure if it was from sitting with the babies so much. The pain definitely continued. I was 8 days late for my 3rd Keytruda infusion which I finally got when I arrived home in May. My 4th infusion is scheduled for 5/31/19.

I had scans yesterday, CT chest w/o contrast and MRI abd/pelvis with and without contrast. Sadly, there are either stable or increased size of all my bone mets as well as my lung mets. Luckily, there are no new mets. My L4 vertebral body met is stable at 1.9cm x 1.8cm (noted previously at L5). The S1 met increased from 1.4 x 0.8cm to 2.3 x 1.8cm (previously noted as L5). My right iliac lesion increased from 0.7 x 0.7cm to 1.7 x 1.0cm. These are all compared to my MRI on 2/27/19. My manubrium met increased from 1 x 1.2cm to 1.3 x 1.6cm compared to the CT chest from 1/28/19. Most of the lung nodules have increased from 2-3mm to now largest 4 x 7mm in size, 3 of which are stable.

This is not the news I was hoping for. There are so many possibilities. Could there be rebound growth from stopping the sutent? Could this be pseudoprogression or is Keytruda not having any effect on me. My body has also been through a lot of stress including me accidentally getting pregnant (I found out on 5/10) and had to terminate at around 5 weeks because I cannot risk being pregnant while on treatment and actively having progression of disease. I was given Methotrexate 9 days ago and took Cytotec 3 days later and still actively going through the medical termination now. I really hope that the pregnancy did not speed things up even more because I feel like my bone mets grew A LOT in 3 months (approx 1cm for some).

I see my oncologist on 6/6/19 and will see what options he has for me. If there are any advice anyone could give so I can prepare to discuss with him at the visit, that would be wonderful. I am trying to stay positive as always.

[D.ap]

Nhi,

So happy for your mommy hood happenings . : )

My thought is that with your pregnancy ( I’m sorry that you were faced with this decision) that maybe your progression may be from a hormone increases ?
We’ve had more than one ASPS patient have tumors and or experience progression during or after being PG.

[Olga]

Nhi, I am very sorry to hear that the scan results are very alarming.
All the reasons that you are considering look valid, and it is hard to say what is the main one.
Re. pregnancy. It is very much possible that the drug that you take for the medical termination of the pregnancy or the pregnancy related hormones speed up or interfere with Keytruda action. As I remember, all the cases of the faster ASPS progression during the pregnancy happened during the third pregnancy trimester - see what you can figure our from that, what are the hormones usual elevating during the third trimester and how it corresponds ot a treatment you are having. How does your blood work look like - lymphocytes and neutrophils? Perhaps you should not even have Keytruda during this treatment. Good immunology dr might have more clue as per interaction.
Re. possible rebound growth from the Sutent. It happens not from stopping it but from the developed resistance - the speed of growth is usually increases after resistance develops at least initially. Sometimes starting another TKI helps temporarily (pazopanib?)
Re. pseudo-progression (that might be easier to see as the next scans would show).
Have you had the PET scan before starting the Keytruda? You could have another one now and compare the SUV - that might add the information. Faster growing bone mets would show the increased intake and bigger sized but inflammed mets would probably show the decreased intake?

[ntran727]

I did have a PET before the treatment which only detected the large 1.9cm L5 lesion and the manubrium (which I had a bone biopsy done on). The other sites did not show activity. The early pregnancy surely will affect the body as there is a surge of hormones and lots of growth to prepare the body for pregnancy. I was extremely fatigued I could barely wake up to take care of my babies then, and I wasn’t sure if it was pregnancy, lack of sleep from having newborns or the keytruda, but once it was terminated, I went right back to normal. My back pain has been increasing, so I fear that it is likely not pseudoprogression, but true progression unless the swelling/inflammation from pseudoprogression can also cause more pain in the area. My L:N ratio was around 1.3 and the rest of labs are completely normal, even my thyroid function after me discontinuing synthroid. My guess is that the Sutent was still somewhat working and that I wasn’t fully resistant and it continued to stabilize the lung Mets. The L5 met also only grew from 1.7-1.9cm in 7 months, but again that met is the only one that is stable in size. The reports are all over the place so it is really hard to tell where the original Mets were and how much they grew. They not only missed the previous Mets but now switched the location of it on the report (like I said previous report said L4 and L5, now it’s all of a sudden L5 and S1. I am not sure which one is causing the increasing pain. We haven’t tried RT or ablation yet, so perhaps that will be in the discussion along with maybe adding back a TKI. I was able to reschedule my appointment to see him early tomorrow morning.

[Bonni Hess]

Dear Nhi,
As I share with you the great joy of the birth of your precious new little miracle twin babies, I also share the deep heartache and concern of your disease progression. Any of the possible causes for the disease progression that you have given are certainly possibilities. Unfortunately, as with everything with this very challenging disease, there are so many unknowns with no definitive answers so it will probably take time to determine exactly what has caused the disease progression. As Debbie said, there are several documented cases of pregnancy related disease progression due to the increased hormones, but as Olga said, that has usually occurred in the third trimester of the pregnancy based on anecdotal observations. I am holding VERY tight to Hope that it is pseudo progression which is known to occur with Keytruda use, but I share your concern that the increased back pain could be more indicative of true progression. However, it does seem that pseudo progression caused swelling/inflammation could certainly cause increased pain. Hopefully any Keytruda patients on this Board who have experienced ICI Immunotherapy related pseudo progression will share their experience with you regarding increased pain. I am very grateful that you were able to expedite your oncologist appointment for tomorrow so that you don't have to wait to discuss your situation, concerns, and treatment plans for another stressful week. I personally feel that pursuing ablation of your largest most concerning mets would be a good treatment option at this time, and one which you should discuss with your oncologist. The inexplicable/inexcusable missed reporting of a couple of your mets and the erroneous reporting of their location by the radiologist is extremely frustrating, and sadly something which many of us on this Board have experienced, which is why it is critically important to be as proactive as possible and to insist on personally reviewing the scans. I am so grateful for, and applaud your continued positive attitude in the midst of so much turmoil and stress in your Life. We have always felt that having a positive attitude helps to strengthen the immune system to better fight this disease. Take care, stay strong and positive, and know that you are not alone in your battle. Heart to heart with deepest caring, healing wishes, warm friendship, and continued Hope, Bonni

[ntran727]

Thank you Bonni for your kind words.

I went to the oncologist today. The plan is to do RT to the L5/S1 bone mets because those are the ones likely causing my increased pain. He hopes to achieve an abscopal effect to Keytruda with the radiation therapy. He said for bone mets, he prefers RT over ablation types of treatments which I also agree with as all of my mets are the same region including the right iliac one. We sat down and looked at the scan together. It is interesting that all of the bone mets are near my primary site in the right upper buttock. I wonder if had I don't radiation to the area at first as recommended, if it would not have metastasized there. Either way, I guess we will never know.

He wants to resume Sutent, I suggested at 25mg daily dose as the 25mg/12.5mg dose was too low to be effective and I am not sure that I could tolerate the 37.5mg dose. I asked to switch TKIs, hoping for access to Axitinib (in the Miami trial). He said we don't have access, but can give me Pazopanib instead. I am going to take Sutent in conjunction with Keytruda for now until I get the Pazopanib rx. I hope to be able to tolerate the full dose of Pazo and to have less side effects than Sutent.

Has anyone taken both? What were the differences for you in terms of side effects if you have taken both?

I go for my 4th infusion tomorrow, will see him back in 3 weeks. I should be able to monitor the effectiveness some based on my low back pain. Praying for the best!

[arojussi]

I have been on both sutent and opdivo at the same time. Tki helpswith swelling and some tkis can cause neutropenia. For immunotherapy to work you want to have high amount of lymphocytes and relatively low amount of neutrophils. I think Miami trial withaxitinib and keytruda showed, that tki work well with immunetherapy. Tkihelps with inflammation likecortisol, so it helps with immunotherapy side effects, but is less likely to mess with immunesystem.

[Olga]

Nhi - is this the recent LTN ratio or at the start of the treatment? the inflamed bone mets can also cause the significant pressure related pain as there is no room to expand. I would compare the PET SUV values if possible before doing the RT. read this
https://jitc.biomedcentral.com/articles ... 017-0309-3

[ntran727]

Thank you for your response, Jussi. Were your side effects a lot worse on the combination treatment?

Thank you for the article, Olga. I just emailed him about your point and if PET would be useful. Either way though, I would want to start RT only because of the abscopal effect, and like Jussi said, there is definite benefit in the combination of TKIs with ICIs, so as long as I can tolerate it, I would rather not wait at this moment. I am very concerned about the size and location of my spinal Mets. If the future scans look good, there may be a chance we won’t know exactly what worked, if it was pseudoprogression and it worked later on vs. adding the other treatment combinations. We will see what he says. I had posted my LTN Ratio from the start of treatment which was around the same as it is now. I believe it was around 1.5 then went up to 2 then back down to 1.3 and today’s labs went back up to 2 again.

[Olga]

re. RT. The timing and treatment dose/fractions are very important for the abscopal effect to be tried for. From our own very in dept research, the SBRT with the dose of about 30 in few fractions, done with the keytruda or or other ICI drugs at the same time - a day before, on the same day or after. There are cases when if it was done in the middle of the cycle, it produced the opposite effect. There is a write up posted somewhere in the immunotherapy strategies. So basically since you have already had your K dose now, your best bet would be the next treatment as it usually takes time to plan - at least our dr had to have a week for planning.

[Bonni Hess]

Dear Nhi, Thank you for the thoughtful updated information following your appointment with your oncologist.. It sounds like you and your oncologist have developed a good treatment plan and are pro-actively moving forward with it. Olga has offered some excellent information and knowledgeable insights which I encourage you to discuss with your oncologist. Regarding your RT treatment for your spinal mets, what type of radiation treatment is being planned? FYI, when Brittany underwent photon radiation for her large cervical/thoracic spinal met 11 years ago, the radiation seemed to make her spinal tumor more aggressively progress causing an emergency major laminectomy to prevent paralysis/death. ASPS is so extremely radiation resistant, and standard photon radiation definitely did not work for Brittany, so Hopefully a different type of radiation such as SBRT is being planned for your spinal met treatment. I Hope that you tolerate the combined Sutent/Keytruda and then Pazopanib/Keytruda treatment well with minimal negative side effects which allow you to feel good enough to care for and enjoy your precious new little baby boy and baby girl. Most of all, I Hope that your new treatment will be VERY successful in shrinking/destroying your mets and stabilizing your disease progression. You are being held VERY close in my heart and my most caring, a thoughts, and I will be anxiously awaiting your next update. With special hugs, deepest caring, healing wishes, and continued Hope, Bonni

[arojussi]

Having tki and immunotherapy at the same time was suprisingly easy side-effects wise. Immunotherapy had minimal side-effects. Of course tki caused diarrhea was irritating, and high wiber diet madeit even worse. But to summarise immunotherapy and tki wasnt worse, than tki alone for me. It is indeed best to have infusion and radiation close to each other.

Having immunotherapy and radiation can make tumors swell at first. It can take long before swelling coes down. Tki should help with this, but they also slow bone healing, but to me I wouldsay it was worth it, but my jaw bone is still in really bad shape, but tumor there is most likely dead.