Want to talk about Multiple Myeloma: Anyone else?

No not yet. Sometimes think this is my journal! Am getting the next 21 days tomorrow so a relief for a few weeks. I am not sure it matters to have the doctor appointment the same day as the myeloma labs. In fact, since we have them she can review them with me tomorrow. For me, a better understanding of what is happening rather than talking about it weeks later.

There was a good drop in numbers but maybe because a new medication and it will level off. Hope not, the faster the better! Thanks for all your advice and encouragement! Wish had joined wjmhen first diagnosed but never thought I would go to Mayo!

@tml Yep, you have to be your own advocate, and get things set on the timeline needed. Remember, your medical team has more patients than just you, and shuffling things around could result in someone getting set on the sidelines. There is certainly a technique involved in getting your needs met for timeliness. And from what I have experienced, although it may be a pain in the a**, knowing that I had an active hand in getting my treatments taken care of, and being involved, makes it better for me. Of course, I have "time issues" as they say, and would rather have my appointments/prescriptions all set up as much ahead of time as possible, in case there is a need to change things up.

Being actively involved in your care will make you feel better also. Are you journaling this for you peace of mind?
Ginger

I am immunocompromised. I had my fourth full shot last month and have been told to get a full fifth this week.

The pharmacy said would call when received the prescription. Guess it is in process but I will not be happy until I know it is shipped. Tomorrow is my dictor appointment so will talk with her about scheduling as would be good not to be down to the wire. It is already Wednesday and need by Friday so still a bit stressful for me. since the numbers have come down with only one month, I am hoping that will be true for this second round! Revlimid makes me so tired but worth it. I just wish I did not have the bone issues as 24/7 I feel the effects of the lesions. Not terribly painful but z sort achingly uncomfortable which is adding to my stress. Maybe with some better weather. Will see if my doctor can schedule as you do so that there is more time for processing the labs. Not sure why some are sent to Mayo but that is what they do!

@tml That is great to hear! Have you gotten the shipment all set up for this week, yet? I had FedEx drop my next batch off this morning., and start on Thursday with the new round. As you saw, it takes a few extra days to get the results in on the specialized tests, so now you will be warned for next time! What has worked for me is to get my labwork done the day after the last dose of a round. The critical numbers my dr wants to look at are ready and he sets it all in motion to get the next round released. I am lucky because my labwork for that is done right at the cancer center, and he has the results in a half hour.

Don't look at it as wasted time, worrying. You found out what it will take to get the "ball rolling", so you are better prepared for next time.
Ginger

Seriously, you’re doing great! You’ve had so many unexpected things tossed at you these past few months with a new diagnosis, new meds, new doctors, medical challenges you didn’t expect to face and abrupt life style changes! I’d say you’re handling this all quite well. But, increasing the positivity level while decreasing the worry level will help even more. ☺️.
Aw, I’m really sad for you with having to cancel that trip to Amsterdam! It sounds fabulous and I’m so sorry you have to miss it this year! But I still see this trip and others in your future. ☺️
Congrats on the NYT Sunday Puzzle. We no longer get a newspaper at our house and working puzzles online or in a book just don’t have the same feel for me. I love the folded paper in my lap and my favorite pen. But I end up with crossword puzzle books just to keep me in the loop. I am addicted to Wordle online though.

Ok, the 100 days of isolation isn’t really total isolation. You’ll pretty much follow what we did during the height of covid. You will need to be cautious with no hugging, smooching grandkids, avoiding crowds, wear a mask, sanitize your hands and surfaces, avoiding freshly tilled soil and no gardening. There will be some precautions with foods that are raw, especially and deli meats are taboo. There is no 3 second rule for dropping something on the floor, brushing off and eating it! But all of this will be addressed with your pre-transplant classes. It’s really not as challenging as it sounds.

My suggestion is to stay off the internet for some of these things about transplants.

Have you read any of Louise Penny’s Inspector Gamache series?

Yesss! This is wonderful news! I’m happy and relieved for you!
We’ve all wasted time worrying, alas, it’s a trait of us mere mortals. ☺️

Well the myeloma labs were posted and there is some good news. Numbers are down so hoping with a few more months perhaps another remission opportunity! Yes worrying was wasted!!!

Seems what was sent was okay so I should be getting it by Friday. I wasn’t certain what they needed and the myeloma tests are sent to Mayo to process which adds to the time.

I am reading spy novels now although like to read series so the next one is waiting but have finished all the ones in my queue so guess will have to find more or another topic.

A bit sad as got the notice for the bike/barge Amsterdam tulip trip I booked in January 2020 and finally cancelled. Sigh! Fine before I knew I had this but always hoped somehow we could still take! Since so much myeloma damage in the past 4 months, cannot even bike so just as well.

Hoping for some good numbers when those tests come back. Guess I have not really faced up to the actual reality of the myeloma. I know I need to be more positive and try to focus elsewhere but so hard for me. Did the NYT Sunday cross word puzzle! That took a few days! Have yet to try and paint or journal.

That is why I retired later than I should have as it filled up my time and mind!

I guess I did worry for nothing as it did not come down to the wire as I thought it might!!!

I was reading up on transplants again and saw the 100 days of isolation to recover one ‘s immune system!

Thank you for you response
Judy