First Infusion

[islandgirls]

Today was Boyfriend’s first infusion.

He was diagnosed in the wee hours of the morning on February 1st, Stage IV NCSLC with brain nets. He has no actionable mutations, only HER2 and a PD-L1 expression of 0%. His suggested treatment is the Triplet. 
 

As mentioned in my other posts, it has been a battle in itself just to get him here. But I am grateful that he has chosen treatment. We have those of you here that have answered our questions in the past month to thank for giving him the information that helped him make that decision.

I wanted to update all of you and will continue to do so. I have seen from my quest for information on how much experiential accounts help those of us who are new to all of this, do I am hoping my updates will help others to pay it forward.

His daughter went with him today, so I will be seeing him tomorrow. So far he is just tired... which is another huge problem right now. He wakes every night around 1:30 AM and is awake until 5:00 AM or so. Tried melatonin, some OTC things and his oncologist gave him Ambien last weekend, which is not really working. Of course the dexamethasone he was/is taking for the brain mets (stopped that but now doing the few doses for the treatment) certainly contributes to his sleeping problems. Of course I fret about this, as sleep deprivation is serious for anyone, but especially him as he enters treatment. Any insight on that is appreciated.

I will keep you posted... one day at a time!

💜

 

 

[Judy M2]

Thanks for the update. I hope he does well with treatments.

Dexamethasone is well known to rev you up and prevent sleep. I also used to be awake from 1-5 am. If Ambien doesn't work, let the doctor know. They can prescribe a different sleep aid. My oncologist prescribed lorazepam, which worked for me (I only occasionally take it now). Regarding melatonin, he should keep taking it, as it takes time to build up. I've been taking 10 mg every night for more than a year. 

Eventually his sleep disruption should resolve itself once he is off the "evil dex". Everyone who has taken it in connection with cancer treatments has a story of sleepless nights. One of my neighbors even painted rooms in her house!

[LexieCat]

I normally have little trouble sleeping, but right around infusions is when I'm most likely to. In addition to the dexamethasone (which I welcome for its pain-relieving qualities and energy--it mostly hasn't been a negative for me), I retain fluids for several days after infusion, which increases my need to get up and use the bathroom. Fortunately, I generally go back to sleep rather easily. One thing I've done is to experiment with sleeping in different positions with different pillows and that has helped me sleep better.

I think I've also heard of people taking Benadryl for sleep issues.

Either way, the sleep issue shouldn't last long--it doesn't, for most people. 

[LexieCat]

One other thing to remember--the most extreme side effects are likely to happen with these first four infusions. Once the carboplatin is eliminated (usually after four infusions of the triplet), the side effects are often more tolerable. Carboplatin is the most toxic of the three drugs.

[Tom Galli]

You might find some helpful sleep nuggets in this post in Lung Cancer 101 on our forum.

Stay the course.

Tom

[islandgirls]

So I just talked to him, as he is at his daughter’s house... he said he slept great and feels really good today!

No sooner had the words come out of his mouth and Debbie Downer Daughter (hey, new acronym for her in posts... DDD) says, “It’s only been one day!”

I couldn’t help myself (and hoping I was on speaker) said, “Uuuughhhh. Negative. Negative. Negative!”

YEP. This battle may be worse than the diagnosis!

 

 

[LexieCat]

She'd rather be right about her prediction of his suffering than see him feeling good. 

I'd get busy perfecting your sad-trombone sound.  

[Judy M2]

One 👏Day👏At👏 A👏Time.!! 

[islandgirls]

@LexieCat YES!! Exactly what my friend said this morning when I told her that story.

Going to see him this afternoon (back at his house) to undo any brainwashing... lol

 

 

[islandgirls]

Day 2 Update: Yesterday he felt great, took a nap and then we went out dancing!! He has been dancing since he was a little guy, as his dad formed a local band back in the day. So we spent the evening with a mixture of two-step, polka and slow dances. He got emotional and teary a few times, but powered through it. I just kept thanking God for another chance to dance together. 💜

Then, I guess it wore him out as last night he slept like a champ.

Day 3: Today he was POOPED! Slept til 11:15 AM, after going to bed around 11:30 PM. Only got up once at 5:00 AM and then went back to sleep fairly quickly.

He ate breakfast and was up for a few hours then napped for the rest of the afternoon. Woke up around 5:00 PM and said he felt a bit nauseous so I suggested that you all had said to take advantage of the Zofran. He popped one then ate a full dinner, with dessert.

He seems pretty wiped out, which seems to be exactly on schedule with what some of you had said about Days 3-5.

Hoping the nausea stays away and if he needs to sleep for the next two days, so be it. Just reminding him to keep drinking water to stay hydrated.

Documenting this in hopes of helping others on their journeys... As always, thanks for the input and most of all, for listening!

[LexieCat]

Yup, sounds to me like he's right on schedule. His energy will start coming back in the next few days. Yes, the staying hydrated is important. My daughter works for Davita Kidney Health (an admin) and she warned me that not staying hydrated could cause kidney failure. She was staying here with me a few months after I started chemo and she always nagged me about drinking enough water. I have a water dispenser and got in the habit of making sure I drank a full 10-oz glass of water with ever dose of medicine or vitamins, as well as a glass when I first got up in the morning. Between that and my habit of sipping coffee or tea all day I was pretty well hydrated!

Not sure whether you've said, but does he work? Or is he retired?

[TJM]

Such excellent news! I am going thru my worst scanziety I've had yet (dont worry about that because if you reach scanziety phase, that's good!)

I can only speak for myself, but the sleep thing....let him sleep whenever. Radiation was the worst for me regarding fatigue. 15 hours a day sleep was not unusual for me. My wife told me I slept so hard she we check to make sure I was still breathing!

Loved the update. Tell his daughter.......never mind. 😎

Peace

Tom

[islandgirls]

Been slacking on updating... funny how the world doesn’t stop for cancer...

@LexieCathe cannot work right now due to his brain mets, as he is a seizure risk. He is meeting with his neurologist soon for an evaluation to see if he can resume driving and go back to work. Honestly right now he is just so wiped out, I don’t think he could work. But on the other hand, sitting around every day is not good for him mentally or physically.

Were you all “sick” before treatment? I keep thinking after he gets a few treatments in, he will start to feel BETTER! Hope I’m not imagining that... did any of you have swollen lymph nodes or I guess more accurately, affected lymph nodes? His under his chin are still hard as rocks and enlarged. Wondering if the chemo will shrink them and how many zaps it takes for that to happen?

Update time:

Day 4: He was not that tired compared to the day before. Sat around and watched golf all day and ate pretty normally.

Day 5: He got his second Covid shot. The timing was rotten, but his oncologist said he could get it. (Shrug?) I took him (remember he has lots of people ubering him these days with the no driving) and when I got to his house, he looked pretty worn out... he pushed through it and we got him fully vaccinated. He again ate like a champ and really did not nap at all the entire day.

Day 6: I had to go into my office yesterday (starting to go in once a week now), so he texted saying he did not feel well at all. I thought, “Uh-oh. Sneak delayed attack from the chemo.” But then realized... second Covid vaccine was Monday. Thinking that was it, as I stopped by after work and he ate a full dinner and seemed like he did not feel that bad.

Trying not to be over-confident at how well the first treatment went, as far as little side effects. Not sure if they typically roar their ugly heads within the first week? If so, he seems like he tolerated it like a champ.

It’s just hard seeing him like this as he is definitely not himself. He has lost his hair from the WBRT and now is self-conscious about looking like a cancer patient. I push him to get up and out (as out as possible with nowhere to go with Covid). But I can tell he just feels icky. Wondering if the treatments will make him feel better and if so, when? sigh He is very hoarse and has been since early January... any of you have that?

Today my friend and I are planning to kidnap him and paint a shamrock on his head... take him to some outdoor establishments for St. Patrick’s Day! ☘️

 

[islandgirls]

@TJM 😏

Right there with ya, but forcing myself to take the high road. 🤐

On Monday, he suggested we go visit my parents who live about three hours away, after his first scan in a few weeks. I told him I would really like to be at the scan to hear the news straight from the doctor and just leave from there as the hospital is one hour closer to my parents. He has a scan and an infusion scheduled for that day. I said I don’t want to cause drama, but it would be handier to leave from there. He said that was fine but we’d have to drive separate from Daughter. (Okay, big deal!)

He said, “Oh you think it’s going to be bad?”

I said, “No but I think Daughter is going to interpret it as bad. Right now the only thing that has been treated is your brain. Now from what I’ve read, the radiation should have had a 60% response on shrinking your tumors. But none of this (rubbed his chest) has been treated except for this first chemo hit. I don’t think it works that quickly. So your scan could show either the same or progression. Which could be inaccurate because what if the cancer actually grew, but the one dose of chemo shrink it a little? Daughter will want to throw in the towel and stop.”

He got it. I just want him prepared. But then I started thinking they may only do a head CT, because the docs have to realize everything I said to him? We shall see.

Thanks again for the support, everyone. Positive juju for your scan and to all of you with your treatments right now! 💜

[LexieCat]

I think any brain scans will be MRIs, not CT scans. I wouldn't expect much change to the cancer in the lungs/lymph nodes after a single infusion. It could be that this is in lieu of the scan normally done at the start of treatment--maybe it was delayed because of the radiation (just guessing on that). I know that some people getting Keytruda have what's called "pseudoprogression," where it appears the tumor has enlarged but is actually reacting to the immunotherapy. 

I've never had any non-treatment-related symptoms of lung cancer, so no, I wasn't sick before treatment. I still have fatigue and "brain fog" that interferes with my ability to work (legal work involving intense, complicated research and writing), which is why I'm now out on disability.

One thing to know about Social Security Disability (SSDI). People with Stage IV lung cancer automatically qualify. And the amount of the benefit is the same as what you'd get at full retirement age. There's a five-month waiting period from the time you become disabled until you are actually eligible for benefits, which are paid the following month. It's pretty easy to apply on line at the Social Security website. Some people with disabilities are denied and have to file repeated appeals before qualifying--folks with Stage IV lung cancer don't. And after two years on disability, you automatically are eligible for Medicare, which might be important. Just something to keep in mind. 

Would the place where he's being treated allow BOTH you and his daughter to come to his appointment? Most places seem to be limiting any "support people" to one (some don't allow anyone unless absolutely essential). I haven't heard of any allowing more.

[islandgirls]

@LexieCatYes. I had told him that I had read about the social security thing, so I just reminded him again.

I think we can both go to the meeting with the radiologist/oncologist but probably not both sit with him for the infusion after the meeting.

My office is just down the road from the hospital, so if she wants to sit with him, I can just leave and come get him afterwards.

Thanks for reminding me about the SS! 💜

[Judy M2]

@islandgirls, I was healthy before my Stage 3b diagnosis, and after chemo, radiation and now with targeted therapy, I've been declared healthy again. At this stage, if your BF wants to sit around, he should have that luxury. Radiation really wiped me out, and I had zero energy for a long time. Chemo takes time to work. And hair, ugh. Mine has finally grown back after a YEAR. Hats are essential. Hope he continues to tolerate treatment. 

[Susan Cornett]

I wasn't sick when I started chemo - I was on the heels of surgery and had finally stopped coughing nonstop! I've had chemo twice: the first time I had cisplatin and qlimta; and the second time I had carboplatin and taxol. I strongly recommend checking out chemocare.com - it's a wonderful resource.

For me, each session hit a little harder than the previous session. I always had chemo on Fridays. With the cisplatin round, I felt good until Sunday afternoons and then the nausea kicked in. By Wednesday, I felt human again. I didn't have nausea with the carboplatin and taxol but I had joint pain and lost my hair. I get why he feels the way he does - that was the only time I felt like I looked sick. I ordered a t-shirt that said "My Oncologist Does My Hair" and I wore it quite a bit. It was good for a laugh or two and put people at ease. 

Keep us posted.