Update on DH's Cancer Journey

I haven't updated Dave's status in a while because, well, it's just so confusing!

He's had 3 rounds of chemo now.  His results have been so dramatic that his oncologist, Dr.S, dropped the chemo from it's original 5 days in a row with 1 drug all 5 days and 1 drug every other day, to 3 days in a row with 1 drug 1 day and 1 drug on all 3 days.  Confused yet?

We saw Dr.S. 2 weeks ago; the labs are better than they should be, although the immune system is shot (WBC is low/low).  His thoughts at that time were that the 3 rounds of chemo Dave has had might just be enough.  What?!  But, he wanted us to make a return trip to Barnes Cancer Center in St.Louis to see a specialist, Dr.J.  We saw her back in August, and her plan of treatment was 3 drugs, 5 days in a row, for 6 months.  Dr. S. has always said he thought 4 months of chemo would be enough.

So, last week we saw Dr.J; her recommendation---go back to the original plan of 5 days in a row, and do it for 6 months.  Dr. S. was concerned about basically ruining Dave's bone marrow to the point that it couldn't be harvested for the possibility of a future transplant.  Dr. J. says that's not an option anyway, that if he someday needed a transplant he would need a donor.

I also asked Dr.J about making Dave wear a mask and gloves when we're out in public.  She said he doesn't need to wear a mask, that he doesn't need to worry about the germs.  I reminded her that when he returns to work he'll be surrounded by up to 1000 people a day.  She's convinced that's nothing to worry about.  I'm stunned.

We have an appointment with Dr.S. tomorrow, and I have so many questions for him!  I know he's been wanting to get everything done in this calendar year because of the cost involved, but I don't believe for a second that he would cut treatment short to save us money.  He's been Dave's oncologist since his diagnosis, and I trust him.  Dave's been off work on long-term disability since he started chemo.  He can stay on it until the beginning of March, then he would have to go on SSDI if he couldn't return to work when his time is up.  I have no clue what that would do to his insurance coverage yet.  I actually think he could return to work when his time is up if he just takes it easy.  He has 2 weeks of vacation that have to be used up before the end of April, but he can use them one day at a time if he wants to.  Instead of working his usual 50 hours a week, he could work 40 and use a vacation day to make up the difference.

I'm sorry this is so long; we simply are so confused we don't know which way to go with this.  The last time Dr.S. did labs, he told us the cancer was almost undetectable in Dave's blood.  Considering it's leukemia, he thought that was great.

I would so welcome any thoughts on this; there has to be someone else who's gone thru something similar.

Just the phrase "cancel is undectable" is wonderful to hear! There's a light at the end of the tunnel, and confusing as it may be it sounds like things are looking up for you.

You're always in our thoughts and prayers!

I'm sorry, my friend.....I simply don't know what to opine about this. I've been wondering how Dave has been doing, so I'm glad to hear that the cancer is undetectable in his blood. As Lana said, we are thinking of you both and sending good thoughts! 

I'm another that doesn't have much to add as far as advice. My SIL has lymphoma, not leukemia. I am sending lots and lots of and though.

So, had labs and saw Dr.S yesterday.  He hadn't had a conversation with Dr.J yet, as it's impossible to get hold of her.  As soon as he walked into the exam room, I said, "what the heck is going on?"  We told him everything Dr.J had told us.  He spent almost an hour talking with us, answering every single question we could think of.  His recommendation was to finish the 4 rounds of chemo (which is what he had wanted all along), at 3 days per round (instead of the 5 Dave started with).  Apparently, Dave is particularly sensitive to the chemo drugs.  We're going to do 2, possibly 3, more days of chemo this week.  Dr.S assured us he would talk to Dr.J before the end of the week to find out exactly why she thinks what she thinks.  He did tell us "she's going to have to come up with a really convincing argument for me to agree to more than 4 rounds of chemo".  He's going to let us know by Friday if this is the final round.

Dr.S was somewhat surprised at Dr.J's comments about germs and infections.  He agreed that Dave should be taking precautions in public, especially when he's undergoing treatment.  So, much to Dave's chagrin, he will be wearing the face mask when he's around people.

Just thought I'd let you all know where we stand at the moment.  Keep your fingers crossed, please.

I am glad the doctor answered your questions.  And I think the face mask is a good idea, too.  I saw a young woman wearing a gloves and a mask in a restaurant this weekend.  The guy that was with her cleaned her chair, the table, everything before she sat down.   

I was so surprised that the 'specialist' would tell us not to worry about germs.  Every cancer patient I've been in contact with says they take extra precautions to avoid germs.  Even non-cancer patients are told to be extra vigilant during cold and flu season, to cover coughs and wash their hands frequently.