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Afraid Again Progress Report

Anonymous user (not verified)

For those who may have been following the wicked, uninvited guest in our lives known as "Germinal, Non-Hodgkin's Diffuse Large B-Cell Lymphoma, here's the latest.  Thought you'd appreciate an update.  

Yesterday, was RCHOP, Hit #2 for my Terry.  You may recall, we, as well as the oncologist, felt Terry's elevated liver tests could be an indication that the cancer was progressing faster than we could fight it; but, as of yesterday . . . those concerns are now irrelevant. Things were back to a normal level and we attributed that scare to all the antibiotics he had been given for a month. So . . . . we can all cross that worry off our lists of concerns.

Yay!!

Also . . . managed to finally look up a blood test they've been runing for a bit with all of this but hadn't had time to do that until today. It's what's called an LDH test. Basically, it's an enzyme in the blood that is required to turn sugar into energy for active cells. An elevated result can indicate tumor growth and be a clue as to whether or not chemotherapy is effective in certain cancers (like my Terry's lymphoma). BEFORE they began chemo, his was 226, six points over the maximum at the lab. That, in and of itself, after they surgically removed his abdominal tumor, to us . . . tells us the active lymphoma wasn't "off the charts". But, the best news is that after they ran it again yesterday, after only one "hit" of chemo . . . it has gone down to within normal ranges at only 185 now. This is great news, as it is a clue that the chemo is working. We, obviously, have to wait until June 26th (Hit #4) for the repeat PET scan results for more definitive reassurance, as this blood test is merely a "clue", but this news has given us a level of reassurance we are on the right track in sending this "em'effer" back where it came from.

He has all but lost all of his hair . . . sad to see, obviously, as it is the one side-effect that is the most visible and serves as a constant reminder of this wicked disease/treatment . . . but if that is the worst we have to deal with . . . we are "lucky", right? Other than a degree of fatigue at times, he is actually doing quite well. Hasn't lost much weight (I'm seeing to that!) and hasn't experienced many other difficulties with treatment.

As good as yesterday's lab results were, we were almost sent home and treatment may not have been possible. Terry's white blood cell count was almost to the lowest level that they can have it to administer chemo. BUT, they were ultimately able to give it to him but had to send us home with a Neulasta Enpro device that self-injects the day after chemo. Apparently, this med could only, up until a year ago, be given to a patient undergoing strong chemo at a clinic in the form of an injection in a person's arm. NOW, this device is placed either on an arm or on either side of the abdomen at the chemo clinic. They adhere it in place, wait for it to "light up", (yes, it has a set of LED lights that flash, indicating it is operational or not), and injects a tiny needle under the skin. 27 hours later, it sends a signal to the needle to inject the medication for 45 minutes and then it can be removed. It saves patients another visit to the doctor's office. The odd thing about this medication is that it is only effective for a window of time after chemotherapy (27 to 48 hours after). It stimulates the bone marrow to produce more white blood cells as the chemo is destroying them and that's the only time it is beneficial. It DOES, cause a certain amount of bone pain/achiness, but hopefully, the doctor told us, after each successive chemo treatment, Terry's white count won't fall so dangerously low and we shouldn't have to delay a session.

All in all, things are as good as we can expect them to be at this point. We hit a bit of a "bump in the road" a couple of days ago, trying to each find how best to give each other what we need from each other to survive all this . . . . but, long personal story short . . . we fell asleep holding hands. I think we're finally both on the same page about it all and are more in love today than we have ever been.

Sooooo, next hit is July 5th (pray the Neulasta is effective and we won't face any more threats to staying on schedule). July 25th will be the repeat PET scan, the day before Hit #4. THAT will be the date to watch for the reassuring result that will show us this has all been effective, for certain, and we can start seeing the light at the end of the tunnel.
 
Didn't want to leave you wondering how things have been going. 
 
So grateful to those who have taken the time to respond to my pesty (sometimes a bit whiny) posts and for all the shared experiences and suggestions.  You have each helped us in ways I can't possibly describe.
 
THANK YOU!
Rocquie's picture
Rocquie
Posts: 822
Joined: Mar 2013

Hi Dawn, I am glad you had such a good report at Terry's appointment. Congratulations! Now have a good and relaxed weekend.

Best,

Rocquie

 

Simon24
Posts: 42
Joined: Oct 2015

My husband had the take home Neulasta once when we couldn't go back to the cancer center the next day due to the weekend.  His was attached to his abdomen and looking back on it now it was funny the way we both kept watching the light like it was an egg waiting to hatch.  It did what it was supposed to do without any fanfare, and all was well. It was one of the many unknowns that we experienced after chemo.  Terry's LDH test is a positive and it sounds like you can both do a little relaxing this weekend knowing that things are moving along well.  Have a nice weekend.

Anaid2160
Posts: 9
Joined: Apr 2018

I used the neulasta at home. I had good results with it. I didn’t get the bone pain. I did start feeling more sick after it but that was probably the chemo. I would get a hydration infusion a couple of days after rchop. I just went to sick call once my entire treatment. I pray your Terry is as fortunate.

Anonymous user (not verified)

Wanted to drop everyone a quick thank you for your shared support and celebration with the LDH test and that you all found it encouraging.  I also wanted to thank you for sharing your Neulasta stories.  Terry woke up Saturday morning and said everything ached from head to toe.  I guess we expected him to feel something after that little invention did its job . . . but, maybe not quite that extreme????  It was manageable, as things were better after the Tylenol they suggested he take.  He felt better in a few hours; so, he said . . . if it can keep his chemo treatments on schedule, he would definitely use it again.

Anyhhow . . . so glad to say we have resolved our communication issues and that we now feel closer than we ever have been.  This has all brought so much value and clarity to things; so, even out of this hell we call lymphoma . . . there are, definitely a few positives along the way.

 

Stay well. 

Love,

Dawn

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