If at first you don't succeed….TRY, TRY, TRY,TRY AND TRY AGAIN
What a perfect summer! It was hot, humid and didn’t have much going on for most of it but I managed to stay healthy through July and August so what more could you want. Aside from our Annapoils trip in July, we also took a northeast tour to visit some family and make a couple college campus tours for Dylan. We had lots of laughs together and Laughter is good for the soul. Shortly after our trip it was time for more scans- MRI of bilateral femurs, pelvis, lumbar spine, thoracic spine and cervical spine. The MRIs were lengthy, each day was close to 3hours! But they were informative and as Dr Dimou always says, with information comes power. Our virtual follow up was a couple days after imaging and before the Labor Day weekend. Review of images for the most part was positive, there are more lesions but not all are actively secreting ADH. All in all this led Dr Dimou to believe we still have good systemic control and that immunotherapy is working. (But don’t stop reading because things change quickly these days) Out of all the lesions, there were once again some “bad apples” so he suggested that radiation would be the next step for a spot in my left hip and spine. Also, I finally have answers on my ongoing hip(ish) pain- I have a torn glute and bilateral quad tendinopathy. Which made me feel better knowing that it was not cancer related. Overall, The appointment was good and that made 2 easy follow ups in a row…... which was refreshing. Dr. Dimou was about to leave town for three weeks, and we were going to spend a few days in the Outer Banks to regroup and enjoy the last weekend of summer. My sodium had been stable by this point for about 3 ½ months and things were certainly seeming positive! Unfortunately, one week after that follow up- On September 7th I ended up back in the hospital. It was all the same symptoms- swelling, dry heaves,brain fog, altered mental status, the sensation of burnt lips, excessive fatigue, and the inevitable rapid weight gain of 5-6 pounds. It was obvious my sodium had dropped and I knew it was significant. My “well controlled sodium” had plummeted from 140 to 123, the largest drop since February 2021. Having so much experience with all this we knew what had to be done, increase tolvaptan slowly (so we didn't over or rapidly correct sodium) and get ourselves to the ER……that's exactly what we did.I took an extra ¼ tablet of tolvaptan, some NaCl, and headed directly to the ER! Our “treatment” protocol worked and by the time we got checked into the hospital it was trending up. The hospitalization was pretty uneventful and I was only there for two days. Since my last PET scan was in mid August and MRIs were less than 2 weeks earlier, the only thing left to do was scan my brain for lesions and get the sodium up. Easy Peasy! Much easier than in the past.
It had been over 4 months since my brain had been imaged, although that could have spun my anxiety out of control, and well it did a little, I tried to stay focused on the fact that I had no symptoms of having brain tumors. Thank Jesus, the MRI was normal and my sodium corrected without much intervention AND I made it home just in time for the kids first day of school.
The setback left doctors perplexed, how could there have been a nearly 20 point drop, no new lesions and such a quick rebound?? Despite positive indicators, I know my body well (which is a blessing I'm told over and over again) and I knew that something, somewhere changed. Dr. Olivier was in the loop daily and immediately started working on scheduling appointments to get me back to Mayo the next week.
He had a plan and was making things happen quickly, he even proactively got authorization from insurance for high dose Proton beam radiation. By the end of the week my pre radiation appointments were made and we were all set to head back to Mayo. Bags were packed, flight was booked, and we were off to Minnesota on Monday afternoon, September 13th, right after Immunotherapy infusion. Labs and yet another PET scan were on the schedule for Tuesday, Dr Natt and Dr Oiliver were Wednesday afternoon and simulation for treatment Wednesday evening. So off we went, little did we know Our patience and flexibility was about to be tested yet again.
September 14……
After being away from the clinic in July and August there were many changes. The biggest one was the covid screening- they are no longer taking temperatures or handing out days of the week stickers as proof of screening. Although this is sure to help the sticker crisis in the city ( it actually was becoming a big deal, the city was fed up with stickers left all over the place because people don't know to just throw them away), it really does make it even more difficult to keep days straight! Lol. Another interesting change was that the free classes were offered again. Last year when all this started, the patient education classes and cancer “perks” were unavailable but with the clinic up and running as close to normal as possible most of the classes have started again. With nothing but time to kill Tuesday morning after labs, Dana and I decided to go to a nutrition class in the cancer research center. It was fairly informative and personal as we were the only ones there. We wandered through the research center as well where They had a ton of information on Mediterranean diet, plant based nutrition, mindfulness, etc. I practically needed to buy a suitcase to get all my new pamphlets home! The amount of DVDs on breath work and yoga were insane- only one problem, who even owns a DVD player anymore 😬!
Anyway…….Blood was normal and sodium was perfect at 140. The PET was no big deal this time I did not even need anxiety meds! It seemed like more of a formality rather than a diagnostic scan. I was wrong.
September 15…..
Wednesday appointments were all scheduled for the afternoon and included a follow up with Dr Natt and Dr Olivier then simulation. The Dr Natt appointment was quick, we discussed the drop in sodium and plans for how to handle that if it were to happen again. It was nice to see her and my “friends” in her office that are always super helpful. Next up, Dr Olivier! Visits with him are usually super positive and comforting but this time it was different. Instead of simply reviewing the Pet and going over which areas we were going to radiate Dr. Olivier regretfully informed us that radiation would not be happening this visit. YUP, gut punch. It was not cancelled for a reason I had prayed for either, it was the opposite- worsening of spots that were already radiated rendering radiation (at this point) as an unsuccessful treatment option. The PET results were mixed, but with progression. Remember now, that PET scans show activity not size, that being said my left hip doubled in activity (so perhaps that is also causing pain in addition to the torn glute) and the area in my chest that was radiated last year and then this year because of its proximity to the new lesion, tripled in activity as did a spot in my sacrum that went from indeterminate to an active metastatic lesion (All of which explains the recent sodium drop). Naturally Dr Olivier felt terrible that he once again had to be sidelined to cheerleader and not play an active role in treatment. I too felt pretty terrible. Here we are just 18 months since radiation was originally initiated to the mediastinum post thymectomy and 7 months sense recurrence and another treatment seems to be ineffective. And now I have more tumors than we can count. SO what do we do…….take it with a grain of salt, or with a very large glass of wine and move on!
Luckily timing lined up and Dr Dimou had just returned from Greece and put me on his schedule the very next day. I think he adds us on at the end of the day because it takes sooooooo much of his time- not a single visit is less than an hour. Either that or because he immediately walks into his office and drinks or bangs his head against the wall when we leave!
In preparation for my appointment, I spent most of the next day attempting to taking control by reviewing and m charting the progression and regression of every tumor mentioned on every Pet scan since February. It blows my mind how all over the place my response to treatment has been. It certainly seems like we are dealing with different types of cancer. Some get better and then worse, some come out of no where after treatment and the disappear. So crazy. So I made a spread sheet!
September 16…..
Thank goodness Dana made the trip with us, it made the long days of anxiously waiting appointments less painful! We spent the morning walking and walking and walking even got over 15k steps in. Our visit with Dr Dimou was Thursday at 3pm and didn't end until 4:30! So much, soooooo much info. These are the “bullet points”.
There is progression but he still is hopeful that we have some systemic control, however there is enough progress that we need to improve that control and this would be a good time to change gears and initiate Lutathera, a radioactive nuclear medicine therapy for neuroendocrine carcinoma. It is given over the course of 6- 8 hours with infusions of amino acids before and after treatment and I will be radioactive for 30 days at a time. The treatment is usually given every two months for 4 times. I don't have specific info because I have not personally reviewed this with the new doctor yet but Dr Olivier has been talking to him for months in preparation of starting this when the time came- and the time has come. So we are adding Dr Geoffrey Johnson to the team to take the lead with this option. See below if you are interested in learning about the new guy and or new treatment. It could take 2-4 weeks before I can actually get the medication. Obviously the insurance company will probably deny it and will require some back and forth so Dr Olivier has “ordered” it from a specialized pharmacy while we wait on insurance (because the medication could take two weeks to prepare and get back to Mayo). It is not a trial med (per say) as it’s used for gastrointestinal Nets but would be experimental treatment for my awesomely rare cancer. The faster we can get it going the better because the cancer has to be in some type of “control” in order to initiate therapy for best results. In the meantime, we can and will continue Immunotherapy in hopes that it does just that- keep things in control.
What does “control” mean, seriously what does it mean?? I feel like we should have fascinating answers and all we have is my instincts. my sodium. As long as that is controlled we can guess the cancer is controlled. That's a lot of pressure! My body pretty much holds the only key to finding a treatment. There's no research, there is no data, there are just my cells, sodium, instinct, And prayers. A “positive” here is that I have always felt like this was going to be a treatment that would work! We just had to play our cards carefully. The negative is that we have now already played enough cards to use this. That's scary.
(In layman's terms….these cancer cells of mine light up on the specialized pet scan that uses Dotatate which is a somatostatin receptor- and this medication uses that somatostatin receptor to bind to the cells and kill them, sounds perfect right??)
Ok, so that's all the info on the new treatment. Now we wait to hear from the new guy. We discussed a lot of other things during our 1.5 hour follow up. We talked about gathering more information with another biopsy- a tissue biopsy from the chest. This is what we initially tried to do months ago but it was too difficult to obtain so we ended up with a bone biopsy. Now with the tissue tumor exceedingly more active would it make it easier to access? Dr Dimou did not feel like it would be but agreed to talk to the radiologist the next day and get his thoughts. While we wait on hearing back from him he is going to order more testing on the remains of my previous bone biopsy. Additionally I was offered some steroids to help with what seems to be arthritis in both my hands from immunotherapy and pain meds to help sleep when my hip acts up- neither of which I am up to taking just yet. I asked about the possibility of pseudo progression which can sometimes be seen with immunotherapy but he does not feel like that is what we are seeing at this time. I know it seems like he was being overly negative but ironically he kept reminding me the glass remains half full! Finally we discussed the Covid vaccine. Initially I was advised not to get any of them because of my polysorbit 80 anaphylactic but now it is just cautioned. Dr Dimou felt comfortable with me getting it in a controlled setting and suggested that should happen sooner rather than later so there is no delay because of immunization with starting new treatment. (By now you all know me well enough to know I would dig a little deeper so I did.)
Wrapping up at Mayo…..
Friday (and pretty much Monday too) was The WAITING DAY !!! What feels to be the most useless of all days. The thing about Mayo is something is always going on in the background…..always. It’s just unfortunate when that day falls on a Friday! Thursday night we made the decision to stick out our visit until we had some more info, there was too much uncertainty to just jump on the next flight home. Finally on Friday evening we heard from Dr Dimou and to add insult to injury he found out that it is even more risky now then before to get a tissue biopsy because of tumor location so that would not be happening. Also, He did some more research on the Covid shot and it does not seem to be contraindicated with Lutathera, so he was on board with proceeding with immunization. Unfortunately he had not been successful at getting in touch with Dr. Johnson, but hoped to have more information on Monday- so that meant we waited through the weekend. If any of you have been following along since last year you can imagine what we did over the weekend…… walked! Now I have to admit we didn’t do a 13 miler but we did put in hours on the Rochester trails. September is gorgeous there and it was nice to get some outside activity in without humidity!
The beginning of the week was mostly “clerical” with tying up loose ends, processing the order for treatment, getting more labs, etc. Heck, I even had an immunologist that specializes in Covid vaccines take a peek at my history and got consent to have the immunization. I was a nervous wreck, but I finally got vaccinated. felt better having it done in a controlled setting under direct observation of an EMT for two hours! We are home now and anticipate hearing something within the next week or so on when we return to MN. Dylan has out of town baseball games and Rylie has a swim meet- should keep us nice and busy while we regroup.
Here’s what we focus on: despite having a Lot of tumors at this point, and not having great success with Sandostatin, radiation, chemo, or immunotherapy the tumors are small (mm small) and some have responded to treatment (and are not as active as they once were), some are not even active! I have solid sodium control. We are fortunate to have a team of outstanding and dedicated doctors working together on this. We have a plan, more options, and hope. We have the love and support of people around the world. It was another exhausting, defeating trip but we will continue to pick ourselves up and move on. Dr Dimou and Olivier believe we will find something that works and we can still control this like a chronic disease. I am so sorry for the length of this entry, I use this as a journal and a way to keep track of everything, not just to update everyone.
