Updates on Boyfriend Stage IV NSCLC

[islandgirls]

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. 

[LexieCat]

I'm still confused about how anyone has concluded he has "definite" bone mets, without anything appearing on the scans. Pain is one symptom of bone mets, but there are so many potential causes of pain. I've had some pretty excruciating hip pain, and bone mets can happen there, but my scans show arthritis--no lesions consistent with bone mets. So you can't go by pain alone. If he's not happy with his oncologist, he should probably find a new one, but generally speaking, I'd go with an oncologist's opinion about metastatic disease over an orthopedic surgeon's--even if the surgeon has encountered bone mets in his/her practice. Maybe I missed something--is there anything on the radiology showing bone mets?

As for when he will feel better, it's really hard to say. As you can see, things change both for the better or worse with this deal. He may feel better when the main course of treatment with the chemo is done (the platinum-based chemo is the most toxic). It may take a while for the effects to subside, but they usually do. And sometimes the effects get better or worse with subsequent treatments. It's really impossible to predict for each person, I think, exactly how they will feel. And all these effects are also subjective to some extent--the same effect at a similar level may bother one person a great deal, and another not so much.

Hopefully he gets a PET scan soon.

[islandgirls]

@LexieCat I probably wasn’t clear in my ramblings, but yes, both the CT w/contrast showed spine, rib and breast bone metastasis, and the spots in the tibia and femur on the MRI are, as well.

He transferred his care to the new oncologist. 

 

[LexieCat]

Ah, OK, gotcha. Well, you had a lot of ground to cover. I'm glad he's with a more attentive oncologist now.

Are they giving him anything for the bone mets? I get Zometa, and I know at least a couple of people here get Xgeva, which is a similar drug that strengthens the bones. I get mine by infusion every three months, and my NP tells me whatever treatment I wind up on, those will continue. 

My bone met (I have just the one on my sacrum) appears to be resolved at this point. It was quite small, 7 mm. Now not seen on scan.

ETA: radiation is commonly used to treat bone mets, too--it's especially good for treating related pain. I never had any pain from my sacrum.

 

[islandgirls]

This new oncologist will start him on Xgeva next week. Prior doc never mentioned it, nor the bone mets. First we heard of any of them was on Thursday.

So far his appear to be too small to radiate at this point.

Again, we don’t know if these are coming or going... hopefully the PET will give us more info.

Thanks for the input on the cruddy way he feels. I told him the carboplatin is probably the culprit.

[TJM]

Great update Island. I'll give you my 2 cents FWIW.

First. Always follow up on gut hunches and how he is feeling. Best if he listens to his body and advocates...but you seem to be doing quite well. Keep it up.

Second. Feeling cruddy. His description of just feeling off or bad is a great description. Nothing intolerable but not good. That describes my experience perfectly. I figured I would feel worse but after awhile that fact really didnt help. I felt like crud and really didnt want to anymore. But once treatment was over I DID start feeling much better. Started to exercise more and was looking forward to progressively getting even better. Unfortunately, after a couple of months I started going backwards. Something changed and my body was trying its damndest to let me know that something was up. Long story short...I had a pulmonary embolism. Now my thyroid is acting up. Back to that first point...listen to the body and follow the gut.

Third...how long does it last? Will he ever feel better? No guarantees, but I say yes he will. I just got back from hitting golf balls. Wish I was smart enough to know how to post videos. My swing makes me LOL at the moment..but..I hit a full bucket and by the end I was actually hitting some good shots. Today was a great day!

Finally...on the fatigue thing. My advice is let him rest. Soooo many people told me to get up and power thru. Everybody but...my body. My body told me to rest. I think my body was correct.

Very glad he is getting treatment, finding doctors he can connect with and is not giving up. Really awesome. Pat yourself on the back girl.

Peace

Tom

[islandgirls]

@TJM Well that just made me teary.

I cannot say it enough that the support of all of you has literally been life-saving. I am sure I would be a puddle on the floor by now without all of your kind and knowledgeable words.

Tonight is rough. I just tucked him in and sitting watching Hallmark while talking myself into going home. He is MISERABLE. I keep telling myself that this is just the means to a favorable end, but when he hurts, I hurt.

I popped on here to see if anyone had responded. So thank you for talking me up as I leave him for the night.

Long story but he lives with his 89-year-old mom. lol I know how that sounds, but he moved in with her after she had a fall and broke her neck a few years ago. She recovered from that and then fell and broke her shoulder. Recovered from that and ran over herself with her car... was dropping off something for a friend in a nursing home and left the car in gear. Realized it, tried to jump back in and the back tire caught her and rolled over her femur. Didn’t break it but yikes it did some skin damage... that on top of my divorce maintenance specifies that if I remarry or cohabitate, then my support stops. So we just live separately. Now I wish we lived together so he could be under my eye 24/7. Although selfishly, I think it’s good for my psyche and spirit to have some time to recharge.

Anyway, I know that he could be doing MUCH worse. I reiterate that to him and just stressed how the tx is WORKING! But it sucks to see him like this and I know it’s sucks much worse for him to endure it.

Thanks again!! 💜

[Jesse L.]

Hello islandgirls... I'm sorry to hear of your frustrations and your boyfriend's depressed state. I'll give you my perspectives on your concerns as best I can.

1. You have to have a medical team and a common sense process that your satisfied with. I know that just makes common sense, but at an emotional time it's hard for us as uneducated patients to know just what we need. We're counting on our medical team to do everything right and who really knows if they actually are? At a minimum though you have to have all the tests done first; CT, PET, and MRI before you can get a good diagnosis and an appropriate and adequate treatment plan that will address all discovered abnormalities. The tests are more than just discovery...they are also a baseline for all the tests that will follow. So, you're doing the right thing by demanding the most sensible and best care possible.... Keep that up!

2. Oh yes, no doubt about it feeling just lousy, having a finicky stomach, and sometimes just insurmountable fatigue seem so hard to deal with. Know that there will be good days and bad days; some days you feel like eating and other days it's tough to even think about eating. And as to fatigue you just have to roll with it. As to food, even if I didn't feel much like eating anything else I could always down some kind of crackers (oyster, saltine, graham, etc.) And for taste I would slowly suck on breath mints to stave off any bad taste in my mouth. However, my advice is to not force anything and let your boyfriend be your guide as to what he either is willing or able to do. Just make sure that there is food available in case he wants to eat and know that there will be better days when he will have the energy to do more. In times like those you could suggest a short walk together or maybe just go outside and watch the traffic go by. As to when he'll feel better for good, just assure him that after his treatments he will feel better more and more every day. Just be there for him...that's the most important thing you can do...oh, and be strong for him too. I can well imagine it's hard on you to watch him suffer, but imagine if you will that someday he may be taking care of you. What would you want if that was the case; an endless caring and capable soul or a person who seems to becoming unraveled?

3. And as to "family situations" I think there's more of us with those than the so called "normal" families. I'm 64 and my other half is 61, and even after being together 20 years we don't do the boyfriend/girlfriend thing...instead we're happy to be each other's significant other. Of those 20 years we have only lived together for the last six years. In the years prior she was living with and taking care of her Mother prior to her death. In current terms my significant other can easily speak to her family about my sickness, etc., but I can't do the same with my family. My family is, sorry to say, nothing better than critical and judgemental. All I would hear from them is that because I once smoked I somehow deserved to become sick; you can imagine the feelings I have for them in return. But it's all good... I learned a long time ago that "family" is not always what it's cracked up to be. I've gotten more support from my ex in-laws than I'd ever hope for from my own sister who was once married into that family. That's messed up, but that's just the way it is. Hoping for better in regards to family is pointless and only leads to frustration and depression. I would rather have a happy life than fruitlessly wish for the impossible.

For now you take care and keep looking on the bright side always...your significant other needs your strength now so just carry on. What you write in these forums leads me to believe that you're stronger than you know...

[Tom Galli]

Islandgirl,

I'll chime in on a couple of points. First, consider that a PET scan that includes the knee is likely to have a SUV (standard uptake value) return on his knee because PETs return on pain sites throughout the body. I have chronic pain in my chest incisions and every PET I have indicates a "metastatic disease" finding in this area. Fortunately, my oncologist long ago realized this was an inflammation driven PET return, not metastatic disease. So a PET may not be the determinant tool. Here is some additional information on interpreting PET scans.

Appetite irregularity and chemotherapy is a common problem that I experienced. In my case, a targeted therapy triplet during my 4th line treatment introduced a complete loss of appetite. Food tasted horrible and I was shedding weight. My wife, a dietitian and RN, read that people with problematic taste buds often appreciate mint flavoring. Indeed, I could taste the mint flavoring of my toothpaste. So chocolate mint chip ice cream was introduced as my primary food source. Then, came the homemade variety with crushed chocolate mint chip Oreo cookies churned in to inject more calories. Chemotherapy attacks fast growing cells in the body and these include red and white blood cells. To restore these, lots of calories are needed. Experiment to find food that is appetizing. Try mint and if he responds to mint, try ice cream. No it is not healthy to have a diet founded on ice cream for normal folks but your boyfriend needs to ingest lots calories and if ice cream works, so be it.

Stay the course.

Tom