islandgirls Posted April 17, 2021 Share Posted April 17, 2021 Hi All. Well, it's been an interesting few weeks. This is going to be a long one, so grab a cup of tea and settle in to read this... I have three updates: 1. Bone Mets - You may remember from my comments on other posts that Boyfriend has been having excruciating knee pain. Although it started before his diagnosis (02/01/21), it really peaked (hopefully) a few weeks ago. His oncologist advised him to check with his primary, who did an MRI. The MRI showed a torn meniscus, a Baker's Cyst forming AND cystic lesions on his tibia and femur. The radiology report even stated that bone mets could not be ruled out due to his metastatic disease. We hand deliver the MRI disk to the snarky oncologist nurse in the hallway of their office, whereupon she proceeds to tell Boyfriend (again in the HALLWAY) that she "is sure the pain is from the meniscus tear, so they will most likely refer him to an orthopedic surgeon." I just stood there biting my tongue until it nearly bled, as I wanted to say, "Oh, I didn't know you were an oncologist, schooled in bone mets..." but I refrained. So he follows the oncologist's advice (or was it the snarky nurse making the call??), goes to the ortho, who was a GODSEND. The ortho was like, "I love to cut people open, but your oncology crew really needs to pursue this further with a consult with an ortho oncologist at the minimum before we go in there to repair this." I then asked if Boyfriend's pain was presenting as a typical meniscus tear whereupon he could not get the word "No" out of his mouth quick enough. You could tell he was like WTH is this guy doing here, when this is obviously pain from bone mets... I asked if in his notes, would it be appropriate physician protocol for him to suggest a PET or bone scan, and he said of course. SIDENOTE: Boyfriend has yet to have a PET scan, which I find unbelievable... but I digress. Boyfriend tells oncologist that he would like a referral to stated ortho oncologist. Nothing happens. A few days later, not his main oncologist, but the radiology oncologist who treated him with WBRT for his brain mets calls Boyfriend. Proceeds to have a 30-minute conversation about how he and main oncologist concur that the pain is not from the bone mets (which they acknowledge is present but minuscule), but is "definitely from the meniscus." Let's just say that THANK GOD I had already convinced Boyfriend to go for a second opinion because at this point I was ready to lose it. So in a nutshell, the pain was/is most DEFINITELY from the bone mets. The kicker is, we don't know if they are progressing or shrinking, as we NEVER HAD A PET SCAN! Hence, no before/after pics to analyze. I think this experience only validated my need to listen to my gut. If it weren't for me thinking Boyfriend was a little "off" he would have never gone to the ER, and I would not be writing this, today. My gut told me it was cancer in his bones causing the unbearable pain, but with his oncologist poo-pooing that, I thought, "Well, he's the expert." WRONG. Listen to your GUT!!! 2. Second Opinion - On Thursday afternoon, we went for the second opinion, and it was like a chorus of Hallellujah was being piped into the exam room because it was love at first site. This guy knows his stuff. It was so wonderful to see him basically choking down comments when he casually asked things like, "and why haven't you had a PET scan?" or "Why is Dr. X doing scans after only two treatments?" Yeah. You tell us! Overall this oncologist told us more information during that visit than we have had the entire time, thus far. He actually SHOWED us the scans, which former oncologist has never done, he explained that it is most definitely lung cancer as I had lingering questions with his lack of an obvious primary and his HER2 mutation if it could be male breast cancer. We discussed clinical trials, and he explained that Boyfriend is having a mixed response so far... the brain mets was overall positive. One shrank 50%, many of the smaller, cystic (non-malignant) lesions disappeared, but one did grow a smidge. As for the chest/abdoment/pelvic CT with contrast, some nodes disappeared, others shrank but a few on his neck grew. Overall, I am taking it as a positive, as he is responding to treatment. Treatment plan is to do one more treatment of the Triplet, then do a PET (if he can get insurance to cover it, but he seems to have ways to get that done lol) and possibly switch up treatment. As he and I had previously told Boyfriend, without a scan right before he started treatment (well at all, since he never had a PET), this scan could be inaccurate. The only thing being treated thus far was the brain with the radiation, and then just two infusions. So it is not accurate in knowing if things are progressing or shrinking without that information of the PET. 3. Tolerance of Treatment - He was doing what I believed to be very well. The first treatment he was just very fatigued on Days 3-5 then perked up but then was tired again until about Day 10. Very little nausea, and ate very well. The second treatment hit him harder. Again no real nausea, but this time more of a depression... we were eating the other night and he put his head down at the table and started crying. He is very down about feeling "so bad." When I ask what that means, he says he just doesn't feel good and he is so tired. Yesterday and today he got up, was up for about two hours and is back in bed. Smells are sending him into orbit. Again, no vomiting, but definitely no appetite. He says nothing sounds good. Up until a few days ago, he was saying that but whenever I put food in front of him, he would then take a bit and say, "Oh, this is pretty good" and proceed to gobble it down. Not now. He had two bites of toast to swallow some meds this morning and now nothing. Also complaining of the dreaded bad taste in his mouth and that nothing tastes good. So all advice is welcome about this latest food development. I was expecting it at the beginning, but then when he did well the first time I thought it may not be an issue. I heard to do a mouth rinse of baking soda/salt for the bad taste. He tries to eat hard candy. But I'm at a loss as to what to do, so I love hearing what got all of you through this. Also, do I push him to get up or just let him rest? My gut says to let him rest as there is a war raging in his body right now. But I also know that the more you lie around, the more fatigued you may feel. One last question as he keeps asking me this: When does the light at the end of the tunnel appear as far as him starting to feel at least halfway normal? I think it's a combination of him not sleeping, which is a combo of knee pain/chemo/meds, plus the treatment itself making him fatigued, then you add in not eating and your body has no energy. Perfect storm. But he keeps asking if when he finishes his last infusion if he will start to feel better... will he? Sorry this is so long, but I haven't had a chance to update lately. Again, thank you for the support and love. Link to comment Share on other sites More sharing options...
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