Want to talk about Multiple Myeloma: Anyone else?

I fully understand. You might want to check Margaret’s Corner blog.
https://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mgus-to-mm-progression-sox2/does-mgus-always-precede-mm/mgus-for-more-than-30-years/

Such a good question, @ficy.
Staging is a way of describing where a cancer is located, if or where it has spread, and whether it is affecting other parts of the body. There are different stage descriptions for different types of cancer.

Multiple myeloma staging is quite unique and explained in detail here on Cancer.net.
- Multiple Myeloma: Stages https://www.cancer.net/cancer-types/multiple-myeloma/stages

I assume that since you father has had chemotherapy, his myeloma is symptomatic. What symptoms does he have? What treatment is being suggested next? Is he a candidate for a bone marrow/stem cell transplant?

Good morning! It’s been a couple of weeks since we’ve chatted. I’ve been wondering how you’re feeling, both physically and mentally. Remember to keep your heart focused on the future. 😊 Any news to share?

I am waiting on my myeloma numbers. The one they do here was down but not as much as the last time. For the first time my liver enzymes were high and guess it might be due to the exoparin but not sure. Also having a bit of ankle swelling so worried about that. Am off the Revlimid for the next few days and hope no issue with the next prescription. Guess will email them tomorrow to see if Mayo done. I see a PA on Thursday so hope some information as to how close I might be. I am not sure if I can manage another two or three months. Although there isn’t much else I can do I guess. The T8 damage is always with me. Until the last few days I was optimistic but seems drugs are taking more of a toll. I am trying to do things. Attended a Beethoven Ode to Joy concert last night. Will go out for breakfast today. Still never really feel well and worried remission too many months away if even possible! I guess it will all depend on the next set if numbers.

Beethoven’s 9th-Ode to Joy is my all time favorite symphony! You won’t believe this but I actually have it cued in the CarPlay for our 5 hour road trip to Mayo-Rochester today! What a powerful piece music. It always makes me misty-eyed.
It’s my almost 3 year transplant anniversary and I’m being re-staged tomorrow. I can’t help but think back 3 years ago today, I still had one more week of AML chemo to face before my transplant at the end of June. Getting to remission was the goal~eye on the prize. There was no Plan B for me. I just knew it was going to work! And it did, but it was one helluva ride to get there with a lot of ‘better living through chemistry’.

Unfortunately, ‘feeling good’ isn’t one of the many side effects of chemo and the harsh drugs it takes to get us to remission. Hah, I’d love to see that on the side of one of the med bottles, “Will cause euphoria and extreme good feels!”😅
I can sense your doubt creeping in again, so please, I encourage you to stop worrying about whether you’ll achieve remission or thinking that it might not be possible. Let the meds work. They are strong for a reason because cancer is a relentless foe. So there will be some unpleasantness as the drugs help your immune system take out this invader. Our attitudes can greatly affect how we respond so it’s really important to just KNOW that this will work and that you’ll be able to get to the transplant phase!

I truly, truly, empathize with you that you’re not feeling well. It’s a matter of just plugging away one day at a time, sometimes 5 minutes at a time, keeping some degree of normalcy to your life, which you are doing. That’s encouraging to me to see that you’re working your way through this because honestly, it’s going to take a while before you’re feeling on top of the world again. But you will get through this! ☺️
3 years ago no one could have convinced me that I’d be feeling like I’m 20 and super woman. But here I am, super old woman, and it was all worth it.

Wishing you good news with your visit with the PA on Thursday. Will you let me know your progress?

@tml Like Lori responded to you, it all takes an emotional toll. I'm right there with you, having to work on focusing on daily things, and not focusing on the mm or treatment. I hope the numbers are working in your favor, but please don't get upset if you need another round. Remember you need to be your own advocate, so if they are not responding to you in a timely fashion with results and okay to get another round, call them and get on their case! You don't want to have a break of more than a week unless that is what the dr is ordering!

Last Thursday I had my appt. I am at a very low dose of Revlimid. Because there are other factors involved, we have to go slowly to drop my numbers. As my dr explained to me, we could add another med to speed remission, but the side effects would not be good. We would have to stop everything [including Revlimid] while my body recovers, then start up slowly again. We would lose anything gained if I were to simply stay on the low dose Revlimid only. And I am okay with that. I don't think I can get a SCT due to my kidney issue.

As @loribmt mentioned, I am anxious to hear what the PA has to say to you this week.
Ginger

I hope I am on track not to miss any doses but will know in the next few days. I would not be so desperate to get to remission if I did not have the 24/7 issues with my t8. I have mild pain almost every waking hour. It isn’t to the level of taking pain medication but I never can feel totally well. I am not sure what can be done but apparently nothing until I am in remission. It just seems so interminable and now I am having the other issues of swelling and liver in top of that. I know I am lucky not to have had kidney damage. I was beginning to have issues around the time I was diagnosed but that happened before any damage was done. I guess if it is the Enoxaparin it may clear once I no longer am on it but not sure how long that might be. I sure hope that is the case. I was a bit disappointed that my IGG went from 1800 to 1317 but after this second round only to 1150. That is right in the middle of the range but not sure what significance that has. I know I need to be upbeat but hard for me since I was in such a good place last Fall and I blew it by not getting the second opinion then and with my constant reminder that I have damage. I know there is hope that I can get to the transplant so I should focus there. I so hope you can get to remission. It seems like the right strategy with the kidney issues. I guess not much we can do but see how it all plays out. That said, just one of my down days which will likely come every time I get to the Revlimid renewal window!!! At least while I am taking it I feel as if I am making some progress!!!

Lori, so you are back at Mayo!!! I hope all good news!!! I guess this is something done every few years? At least you have good music for that long commute. I guess mine would be a bit longer! I hope I get to that transplant phase. Now they would give me one here but I think not despite the travel issues!!’

@tml Check to see if you can use a warm compress, or massage in the T8 area where you have pain? Also, CBD cream applied topically might work for you.

Please do not beat yourself up for the hiccup in the road last Fall, okay? That is water under the bridge, now.

And as for the slight rash, that is really common. I had a more severe rash on my lower legs area at the beginning, Just used Vitamin E cream to clear it up, and make sure I keep the area moisturized well. My dermatologist wanted to give me a steroid cream, but "nope" from me! Remember, each time you get to the renewal window, your body is at its lowest point for red blood cells and all, so you may feel more tired, more emotional. It comes with the territory.
Ginger

Yes, have tried CBD. Hmm. Did not realize the impact of the break. I have to ask for the bloodwork numbers as are not automatically posted. Will get them on Thursday. It will be interesting to see them. I should pay more attention to them but often so many are high or low, depressing. Often I guess due to the drugs but still hard to understand if any progress.