Rather than try to put it into words myself, I will copy a msg sent by my daughter to her brothers this afternoon. I think it is all self-explanatory but I don't understand much of it anyway. I'm surprisingly less worried than I have been the past few weeks wondering what tests would show, what is wrong with me, etc. I'm in a great mood and intend to stay that way, although sitting for a 6 hr IV doesn't sound like much fun. I'd better take lots of reading material with me.
"Just got back from mom’s Dr appt to go over her biopsy results. The results confirmed she does have a low grade lymphoma (called Waldenstum Macroglobinemia). They will start treatment in about two weeks. They treat with an antibody (not chemotherapy) called Retuximab. She will go once a week for 4 weeks (treatment is IV and each one lasts about 6 hours). Then they will follow up and re-do labs March 27. They should be calling soon (once today’s lab work is processed and the doctor confirms everything is ok to proceed) to schedule her first treatment. It should help her anemia and fatigue. She may see an improvement right away, but it may also take a while for full effect (around 4 months after treatment and peaking after 17 months). "
I'm really not interested in prayers, but any positive thoughts sent my way are appreciated.
When I think of how much worse some folks have it, I am not going to complain about anything.
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At last you have a diagnosis--that must be a relief. Treatment doesn't sound too bad-- hope it is easy and effective. Wishing you an easy time of treatment and a full recovery.
ReplyDeleteThank you very much. 6 hrs in a chair for 4 wks in a row sounds like the worse part of it ! At least I hope it is.
DeleteAt last an explanation for the fatigue. I guess how long six hours seems will depend upon how comfortable you are. Hopefully the chair is a comfortable recliner. Good books will surely help. Positive vibes!!!
ReplyDeleteThanks. I've been thinking about books I want to read - the problem is that with my poor eyesight I usually read one or two chapters and then put it down for a while. It will be difficult to fill 24 hrs (6 hrs ea, 4 visits) reading, but I can deal with anything. I'm so darn grateful the situation isn't any worse.
DeleteThat six hours will probably include a strong dose of Benadryl to start off. It's just in case you are allergic to the antibody. You will be sleepy. Take a nap. The nurses are very attentive to your every move. They are very kind and you will be made very comfortable. Every drug is different but fear of the unknown is the worst. Once you get your plan of action things will settle down.
ReplyDeleteI appreciate you saying that. I would love it if they had a reclining chair! The dr. mentioned Benadryl I let her know I get a reaction from Benadryl but she informed me that this is more important than the side effects I've experienced in the past. She sure shut me up, haha! I love this doctor.
DeleteGlad to hear you at least know what you are dealing with. David has had treatments like this - 6 hours - but they were chemo. He says they do give you something that makes you drowsy. He takes his laptop and does blog comments. LOL! Really hope this does the trick for you. Keep us posted. I'm going to google the thing and see what I find. thank Jeannie for me. Her note was clear.
ReplyDeleteUpdate: Just talked to David he says "that's a long infusion" and the drug is a Monoclonal Antibody specifically engineered for this disease. Amazing! He's had a couple of them for Myeloma. They are supposed to "target the bad guys and make you well". His worked for a while for him and then his cancer mutated and they didn't work anymore. That's why he's had 15 different treatments. We're keeping you in our thoughts and sending you energy, patience and fortitude!! hang in there!!
DeleteI thought I might take my Nook and do some reading - didn't think about my laptop. I know the Nook has wi-fi but I'm not interested in learning anything like that right now. I can barely find my place in the book I'm currently reading!
DeleteDavid was probably a lot younger than I when he was diagnosed. I hope to have a few good years but if I live long enough I'm sure it would come back! I think David is really amazing how he deals with this - by now I would be so bad everyone would run from me!
You can count on me for no prayers Gypsy:)) It will be kind of like taking an old car to the garage for an oil change and a tune up. Maybe check out that slight knock in the engine too. The Appalachian trail awaits your return but no stopping under a tree for a smoke along the way Okay. All the best to you in the upcoming procedures............
ReplyDeleteThanks, Al. I almost gag thinking about smoking. One cigarette and I'd be up to a pack a day in a week, 2 packs a day after that! I understand addiction!
DeleteI am going to do just fine and I intend to get through the difficult part as quickly as possible.
I know that Readers Digest has large print, and I'm sure the library has a large print section of books. That reminded me that you once volunteered for a library, am I right? Loving your doctor can make all the difference in your outlook on everything, even your recovery, keep us updated! ~Pam in Louisiana~
ReplyDeleteThanks, Pam. Yes, I volunteered at the library but ended up having to quit after a few months because of the limitations of my vision. I'm reading a couple of chapters every evening from a book on my Nook - I can easily enlarge the print. It's nothing like holding a real live book, but when I take that train trip to New York in late spring I will appreciate being able to read books & magazines on it.
DeleteSorry to hear this and I hope that you get through this with flying colours. You should because you are a trouper 😉. Hopefully improvements come quickly.
ReplyDeleteThanks, Vera, for your positive thoughts. I hope I ca live up to the "trouper" description - I'm going to try my best.
DeleteHope all goes well with you.
ReplyDeleteThanks, Diz. And with you too. We all need a little help and good luck.
DeletePositive thoughts headed your way. It's always a relief to finally have an answer and a plan of action. Sounds like a good time to read, take a nap, read, take a nap repeat.
ReplyDeleteI will definitely try to take advantage of the opportunity to nap!
DeleteWell, doggone it. I just have to comment. Having had this same treatment for a different kind of lymphoma twoyears ago, I have a few recommendations. Because you are sitting for so long during treatment, you need to be comfortable. take a warm sweater and possibly one with a hood. I too don't like Benadryl, but it is so worthwhile. Along with a good book, take a snack or even lunch if you are going to be sitting so long. Take a water bottle. Before you know it, this will all be a distant memory!
ReplyDeleteGreat detailed advice Emjay!
DeleteThank you so much, Emjay. I didn't even think of taking a snack although I always carry a water bottle with me. The thought just occurred to me that if I drink water during the IV I will undoubtedly have to go to the bathroom. Do they make allowances for this? It is good to hear from someone who has been through this first-hand.
DeleteYes. They will "unhook" you from the IV for that. There will either be a nurse nearby or they will have a buzzer to come let you go to the restroom and wait for you to return to redo the meds. In fact, it's important for you to drink water so that alone guarantees the need for restroom.
DeleteThat's a relief to know. Thanks for explaining it to me.
DeleteGlad you finally have a diagnosis. Does your nook have an outlet for earphones? You could download audio books from the library to listen to. No prayers being sent from Canada, just positive thoughts.
ReplyDeleteI never did listen to many audio books. I am a lightning fast reader, and of course the audio books are read at a decently slow pace, so I lose interest. I will load up on books and magazines for reading on the Nook.
DeleteI certainly hope so, Barney.
ReplyDeleteGypsy, I listen to audio books while I knit and crochet. There is a speed adjustment so you can make the reader talk faster. It is like the old days of putting a vinyl record on a faster speed.
ReplyDeleteI am just a person who prefers visual rather than auditory, so I'll stick to something I can read.
DeleteSounds like they have a good treatment plan. We will keep very positive thoughts coming your way!
ReplyDeleteI will think of you and send you smiles and strength and good thoughts!
ReplyDeleteGypsy, I am sorry I am late to this post. I have been offline for about two weeks. I remember you were waiting on your diagnosis. Jeanne explained it perfectly. I do not do prayers either but I am sending good thoughts and positive energy your way. You are a very strong lady and I know you will conquer this too.
ReplyDelete