Reposting from my last thread: Wow, I've been posting on other threads but didn't realize it'd been so long since I'd posted on mine. CMM is stable. The new drug (durvalumab, a checkpoint inhibitor-not really a drug but an antibody infusion) is still being well tolerated. He's waking up fewer times at night to cough up the phlegm balls. Was four times a night, now is about twice. I can't say if this is due to the durvalumab or the cromolyn inhalers we imported from England (as they're not sold in the US anymore).
He's also seeing less blood in his sputum, which might be a good sign, and since a test I ran showed he was iron deficient, I'm hoping the iron he's taking now will fix his mild anemia.
We really won't know what effect his treatment is having on his tumor until he gets a PET scan in a couple more months. He is planning a long weekend getaway for us in late March to go to spring training in AZ; it's also his birthday then.
Overall I think we're setting into a period of cancer as a chronic disease. Hopefully he can become one of the subset of patients that are super responders to these treatments, but if not, it still may buy him some significant time with a good quality of life and that's something to celebrated.
Last edited by job; 03/01/1904:15 PM. Reason: added link to previous thread
On an unrelated note - anybody looking for a movie to watch, just saw a 2004 movie Like Something the Lord Made. Really great - the true story of Vivian Thomas, the black lab assistant behind Alfred Blalocks success performing the first surgical repair of a "blue baby" heart. Great cast - Alan Rickman, Mis Def. it's on HBO.
Also looking forward to watching The Boy Who Harnessed the Wind on Netflix - the book was great.
Been wondering how CMM is going. It must be so worrisome wondering if the treatment is working, and whilst it's great that the coughing is abating, twice a night is still a lot.
I'm glad you're both still carrying on regardless. A weekend spring training (whatever that is) sounds energetic if not fun. That can only be a good thing!
Perplexed as to why the cromolyn inhalers are no longer sold in the US. If they're useful why wouldn't they be? Very glad CMM seems to be responding well to treatment though!
Spring training is when the professional baseball teams play their practice games pre-season ; not strenuous for us, we will just be sitting and watching!
Cromolyn inhalers are used for asthma and I guess they just became less popular after steroid inhalers came in and somebody made a business decision it wasn't worth re formulating them into the new pfc-free inhalers. Too bad because they were shown in a study to significantly reduce cough in advanced lung cancer patients and may have some anti-cancer benefits as well. The nebulizer solution is still sold in the U.S. - but now costs $2,000 a month! This for an old drug that was cheap when I trained in the 80's; another example of crazy pharmaceutical piracy in the U.S.
I'm gobsmacked. Just because something isn't made in the US doesn't mean it isn't anywhere else, so to charge $2K/month for something that used to be cheap, in a market as large as the US, is ultra manipulative. I certainly understand why new drugs can be eye wateringly expensive, what with all the hoop-jumping and certifications that must be completed. For older drugs where those costs have well and truly been recovered to go *up* in price is indeed piracy! It's no wonder Big Pharma have such a terrible reputation.
Well, new labs on CMM today. I finally tested him for iron deficiency a month ago when he kept becoming more anemic and his oncologist just seemed to accept it as all being due to the chemo. Turned out he was very iron deficient (one marker, called % iron saturation, which should be 20-50, was only 9.)
He's been taking iron pills diligently 2-3 times a day for a month and today his % iron saturation is only 10% - not the improvement I had hoped for. We will be pushing his oncologist for an iron infusion.
Meanwhile, his CEA tumor marker - not a very good test but the only thing we can follow in between PET scans - is going up
He has his grumpy days and, I hate to say it, reminds me of my ex (in a bad way) at times. I cut him a lot of slack because he is facing all of this and has untreated OCD (which he can't admit he has but it's obvious). It's been a long time since I had to walk on eggshells around my ex and I really don't enjoy being in that position. I'm trying to think of some way to encourage him to try an anti-depressant.
Ugh. I don't know how much more of this I can take. A little backstory: a few months ago I went away for a three day weekend with CMM. He ended up having a snit fit about people calling and texting me while we were gone.
Now I'm not talking about anything excessive. Things like my adult Aspergers son calling a couple of times to share a funny or interesting piece of news, my best friend calling to ask a question. It's not like my phone was ringing off the hook or anything - just what I would consider a normal amount of interaction. He felt that I should have told everybody to only call for emergencies, I felt that was extreme.
Now I'm on another three day weekend trip with CMM. Our first night here my youngest son has a true emergency ( as in spend the night in jail type). The next day I had to ask my best friend to go help him retrieve his car, which she kindly took a couple of hours out of her day to do. I texted his siblings to enlist their support for him until I get back. There really wasn't anything that could be done about it this weekend so I chose to stay and try to continue to enjoy the weekend ( it's his birthday next week and he'd been planning on this trip for a long time.)
Today I missed a call from my friend so I called her back (I was concerned she might be calling about my son). She wasn't and after a brief (less than five minutes) conversation I cut her off.
CMM got incensed and basically pouted the entire rest of the evening, through a fancy dinner out and after we got back to our room. I finally called him out on how he was acting (I was getting tired of doing all the reaching out and getting nothing back) and we ended up having a big fight.
So basically, he ruined the entire evening because I had a single five minute phone call with my best friend who had just done me a huge favor the day before.
He's so OCD, he just can't let go of things, and he doesn't even understand that he HAS OCD. AAARRGH!!!
I am so sorry CMM acted like a child about the phone calls. He doesn't understand what it takes to be a mother. You are a mother and are on call 24/7 when you have children and yes, your son had an emergency and needed your help. I hope the rest of the trip went okay.
OCD or not, his behavior was uncalled for and it's good you called him out on it. He appears to want you all to himself when you are away on vacation, but things happen and you can't give him "all" of the attention. Things do crop up.
Again, I am so sorry he ruined the evening.
Sit quietly, the answers will reveal themselves when you least expect them to. The past is gone, the present is a gift and you need to focus on today, allow the future to reveal itself when it is ready.
No practical advice though other than to say that you did the right things by your family.
On BD H52, W50 T27, M26 S21, D23 BD-9-Mar-16 D-15-Jan-18 Final-19-Apr-18 I am a storyteller. The story may do you no good. But a story is never for the listener. It is always for the one who tells
I feel like you were presented with a unique situation with CMM. You did not have much time to really get to know him before he found out he was sick. You chose to be loyal to and to nurture someone going through a really rough time but without getting to know him outside of that honeymoon phase. Are you happy with this relationship? Do you feel supported and cherished and appreciated? Do you feel like the things you are unhappy with are things he can work on? Are they things you can live with? Any similarities between these issues and issues of other guys you dated?
I agree with you. I think a conversation with a person that helped you in what is a really stressful event while you are on a vacation is certainly ok. Did he expect you to be attentive to him 24/7? A little space to talk on the phone or read a book or check emails is ok when you are away with someone for a few days. Life doesn’t just stop.
