You are in my prayers also. Wishing you the best.

I'm also thinking of you. I hope the appointments went well and came up with a plan that will at least help relieve your fears. I know your mother had MM 40 years ago, but medicine has advanced so much since then, so I hope you can focus on the future.

Thanks, mojomom. One of the first things my oncologist said was to 'just forget' all those old movies where the chemo patient is dying from the treatments! I am amazed at how fast chemo treatment is advancing. An article I read about MM that was written in 2014 is now 'outdated'.

In addition to the results from the MRI that I've yet to get, I'm also curious about the genome information from the bone marrow -- looking for damaged chromosomes or misplaced ones.

I also want to look at my full body skeletal x-ray to see if the "bilateral lesions on the clavicle" are right in line with the considerable indentations from my *bra straps*!

You’ve been in my thoughts as well, so I’m glad you posted with an update. Wow, that is a lot of information to absorb isn’t it? That’s an interesting consideration about the bra straps, I’d be curious to see what you find out. So are they already discussing a possible stem cell transplant with you? My DH was in remission already when he was approached with the subject, (long story) so they just harvested him, but that was 6 years ago. I’ve had people say that the more recent experience they had was not as grueling, is that what you’ve been told as well?

We’ve had a slight setback this week. One lesion that he’s had since the start has grown a bit and destroyed some of the bone in the process. It’s in his forearm and because it was weakened, he injured it while cleaning snow.. He had to get radiation on it Monday. The interesting thing the radiologist said was that they are finding a better benefit with one strong treatment vs. several small so that’s what they did. If that’s the case though, it could be much easier on the patient (over the long term) as well as their pocketbooks.

My thoughts and prayers are with you.

Chisue, I received dexamethasone with both the R-CHOP and R-ICE chemotherapy regimens. Each session started with what the nurses called my "pre-meds" which included dexamethasone, an anti-nausea medication and benadryl. Their explanation was that these were not truly part of the chemotherapy, but rather drugs that would help me better tolerate and enhance the effectiveness of the chemotherapy. I never experienced any side-effects to the "pre-meds" except the nap from the benadryl. The doctor explained to me that each cycle of chemo, I would experience the same general reactions. Days 1-7 would be when I'd experience the most nausea, though I could always control it. I gave myself permission to eat whatever sounded best those days and not worry about a balanced, healthy diet. Days 7-14 I was at the nadir, meaning my WBC would be at the lowest and I'd be most susceptible to illnesses, but I never had nausea in this stage. Days 15-21 I would feel stronger and my counts would improve. The next day, I received the next dose of chemotherapy.

My continued thoughts and prayers.

I'm joking about the bra strap indentations -- not that I don't have *deep* ones (36DD on a small skeletal frame. It would be a hoot, though.

likkiirish -- No, I'm way too old (77) for the stem cell stuff. After reading Idstarr's long, hard road, some part of me is kind of grateful. What else are they trying now with your DH? Do I remember that some other med was added -- starts with an R? How is he feeling -- other than the arm?

Idstarr -- I suspected that I would feel some 'routine' of effects. My regime is a weekly one, which I *may* being June 25, if they can settle on drugs 'fer shure'. I have a preliminary DEXA that looks pretty normal for an old lady. The senior oncologisy is deaf to my concerns about taking a bone-strengthening (bisphosphate) med lest it give me kidney stones. I hope to be able to push water without becoming nauseous. It's a great help to me to hear your story and those of others in similar 'boats'.

Now if I could just get those darn painters back here ahead of the chemo to repaint our MBA - where they painted *everything* the wall color. Best Laid Plans...and all that.

Oh gosh, I thought you were serious! LoL (no I’m not naive!)

Yeah, I can understand why you’d be grateful about the stem cell. My DH is 56 and is not hip with the idea AT All. However, the last time the subject came up with our oncologist, his feedback was that now especially with MM, there are soooo many new treatments that stem cell may not even be the best alternative. How cool is that?

My DH received Revlimed and Valcade simutaneously when he was first treated. He also got the same steriod you’ll be getting (for just a short time) and Zometa (which helps to heal bones). Whether this was the “right” thing for him or not is not really clear because it was that Dr. Fata who created the treatment plan. Even though It brought him to remission, we’ve since been told that he may have received too much Zometa, Iron and most likely Valcade.

Since he went into remission, he’s been on a low dose treatment of Revlimed and other than feeling tired, he has had almost no side effects from it. Health wise, his bloodwork is doing well, his annual round of scans showed a lot of bone healing and his bone marrow biopsy looked good too. He had lesions throughout his body so to see a lot of them heal was really amazing.

Since the start, he’s been on that immune building diet that I wrote about in one of your other threads and in the six years he’s been in remission he’s had only 1 cold. His back is in pretty bad shape from when he first got the MM, but this is the first hiccup since he went into remission. While at radiation the other day, other patients couldn’t believe he was being treated because of how healthy he looks. It really is amazing how far the research has taken us.

I know the kidney stones can be scary but MM changes the playing field when it comes to broken bones. That was reinforced to us the other day when we saw the xray of my husband’s arm and the presentation from the Radiologist. It’s scary stuff. I hope the painter ordeal works out the way you want it to....hang in there!

Lukkiirish, can you link me to your discussion of the immune building diet?

I'm thinking about you also, Sue! Many hugs and prayers to you in this fight.

Adding my prayers for you too.

Chisue, there have been many advances made in the treatment of MM. It is a disease that is not curable, but is controllable.

You might want to read Tom Brokaw's book A Lucky Life Interrupted about his experience with MM.

Also, there is an online forum, the Myeloma Beacon that you might check out. Unfortunately, as is too often the case with medical-related forums, there are those who think they know more than the doctors, dishing out very technical advice, and sometimes questioning others' treatment protocols.

My husband has been in treatment for 2 1/2 years and is doing very well. He is very active physically. He takes a huge array of meds and has frequent labs and regular doctor visits but other than that, we live a normal life. His only side effect from his maintenance meds has been lowered white blood count. However, having gone through a stem cell transplant, the constant hand washing, use of sanitizers, avoiding crowds has become a normal routine for us.

I wish you well and hope for a good remission for you.

It's interesting to read your posts on this subject, Chisue, though of course I wish there were no reason for you to write them. I feel like this disease kind of crept upon you, and I didn't realize for awhile your doctors were telling you that the MM was a certainty. My sister is in the middle of chemo (ovarian,) and has tolerated it quite well. (Easy for me to say!) I remember our dad being much, much sicker forty years ago during his chemo treatments. There are a lot of us thinking of you and saying a little prayer.

I too am saying prayers for you. As always wishing you the best.

wantoretire, I sent you a message with the info.

Be well Chisue...I hope it's smooth sailing..