2nd Infusion Update

[islandgirls]

Boyfriend had his second Triplet infusion a week ago tomorrow. He is following the same pattern as the first in that he has had no real nausea, just extremely tired. All of the horrible side effects that people were warning him about, thankfully have not occurred.

A new development is his lack of appetite where “nothing sounds good.” But the good news with that is if food is put in front of him, he eats it. He complains of a weird after-taste and keeps thinking his breath is bad.

His sleeping is still an issue. I mentioned in another post that he has been complaining of pretty severe knee pain for a couple of months now. It actually began before he was diagnosed. Last week he got an MRI which showed a torn meniscus, a Baker cyst forming, and multiple round cystic lesions on his tibia and femur.

Trying not to go to the dark side and  jump to these lesions bring bone mets, but until I hear otherwise it is hard to do. The lack of concern by his current oncologist has me rather disgusted. Instead of even having a discussion on whether this could be bone mets, he literally just pushed him off to his family doctor and is urging him to go to an orthopedic surgeon. As he “thinks the pain is definitely from the torn meniscus.” Hmmm. When it walks like a duck and talks like a duck...

This lack of clarification prompted us to get a second opinion that he has been toying with doing it anyway, but now he is scheduled to meet with another oncologist next week. I feel in my gut that this new oncologist could be a game-changer.

I am hoping to get some questions answered. Of course I have been relentlessly researching and have stumbled upon some interesting findings of PD-L1 expressions actually changing after immunotherapy treatments. His is 0, which is what has promoted his current oncologist and his snarky nurse (she actually told Boyfriend that she is sure the knee pain is not from bone cancer ~ Wasn’t aware she is an MD!!) to spread gloom and doom to his daughter about his “poor prognosis.”

I am also going to inquire about a second biopsy. My gut is just not sitting well with what has been found this far. His only mutation is the HER2 (ERBB2 Exon 20), but I have read instances of a second biopsy finding different mutations.

One day at a time! 💜

[Tom Galli]

In my 17 years of involvement with lung cancer, I’ve not encountered a metastasis to the legs. That is not to say it doesn’t happen, but I think when considered with the stated MRI finds, his knee pain is likely not lung cancer caused. 

Weird after taste and appetite problems are things I experienced in my 18 doublet infusions. But a second opinion is always a good idea. His triplet includes an immunotherapy component, and I’m quite sure immunotherapy would not be administered if he didn’t meet the correct PD-L1 expression profile. There are too many controls in place that ensure conformance with treatment criteria. 

I do hope the second opinion consultation goes well.

Stay the course. 

Tom

[islandgirls]

Good to hear about the leg/bone metastasis... just seems so suspicious with the timing.

My thoughts on the PDL1 exactly. Plus things I’ve read seems to suggest that the expression is more related to immunotherapy alone vs in combination with the chemo.

Again, it just feels like a negative experience as far as the attitude of the staff and communication with Boyfriend. Looking very forward to the second opinion! 💜

[Jesse L.]

Been following your threads... Thankfully both your boyfriend  and I had minimal side effects from chemotherapy. OK...so a few little things but at least your boyfriend is still eating (got to keep the strength up) and the worst of it is fatigue. One thing I might suggest is to if possible keep him moving in some way. I know it sounds counter intuitive with the fatigue and all, but I've been told by medical that those that move even a bit do much better with chemotherapy over all. I had my first chemotherapy on 4/5 and the next day I was out there walking 4 miles and I'll do that again today. Normally I'll walk up to 7 miles in a day and that's even after the following...

And I'm with Tom in that most likely the knee pain your boyfriend is suffering is not from bone mets. I can speak from experience on this one... I'm 64 now but back in my late 40's I developed a Bakers cyst (didn't know what it was till later) . Well, I called the Nurse Help Line for the VA (34 yr. veteran) and they insisted I come immediately to the VA and get it checked out. They were afraid I had a clot in my leg which can cause a pulmonary embolism which can cause immediate death. So I get there, they thoroughly check it out, tell me it's a simple Bakers cyst, and finally tell me that they can set up an appointment with their orthopedic department, but it would be some time before I could get in. Or they said I could see an orthopedic specialist outside the VA to get it checked much quicker. At a local orthopedic office I shortly thereafter found out that the Bakers cyst was a result of a torn meniscus that had been tearing the hell out of the cartilage in my knee. Honestly the x-rays of my knee cartilage looked like torn fiberglass. And the Dr. went on to state that something like that comes on slowly, but all of a sudden will cause a Bakers cyst (fluid from the knee draining into the lower leg) and then there is concern. So, long story short they went in, scoped my knee (scraped the knee cartilage to smooth it out), sewed up the meniscus, and I was good to go. A couple of caveats here in that they do this with a couple of little incisions and very small tools but because they have to separate the knee a bit to get in there, it never quite comes back together exactly as before. But in all some small "clicking" and some careful joint movement is all that is noticed after the procedure. They offered me joint rehab after the procedure but after a few a days and everything going well I turned that down. And everything has been good since excepting I'm careful about running or turning around fast, etc. A person gets used to that when you get older anyway...

On PDL1 I have read that even the smallest expression improves the efficiency of immunology therapies to a degree. It's just another good example of the improvements they're making in treatments in just the past few years.

And it is always good to get a second opinion if you want one...if I felt I needed it I would get one in a heartbeat. Two or more minds are better than one...always!

Good things to you in the future and keeping you in my thoughts...

[islandgirls]

Thanks, everyone!

His ortho appointment is tomorrow and hoping I am going with him. With Covid they usually are just allowing one extra person, so have to see if daughter is going... will keep you posted.

The fatigue thing is hitting hard, and I liked the part about keep moving. We are supposed to go to the Cardinals home opener this afternoon - Well just go down by the stadium and walk around, as not paying a jillion $$ for a ticket. But he just texted that he doesn’t feel like an outing and is going back to bed... I will try to rustle him up and show him your post.

Thanks again! 💜

 

 

 

[LexieCat]

I don't know that forcing yourself to move when you are fatigued from chemo is a great idea. I'd let him rest. The fatigue is generally temporary and intermittent.