I am sorry I have not been keeping up with this here , my laptop has been giving me problems and to be honest my husband and I have been busy, been traveling to the northern part of our state ( Mississippi ) and attending my husbands Alma Mater college football games. We are staying as busy as usual and have decided that we are not going to let this interfere in our daily life, we are staying very positive. To catch up on what has happened , my husband had a BMB on October 1st and on our return visit to our oncologist on October 22nd we got the results, my husband has only a 10 percent Myeloma count and the numbers that define the CRAB criteria are all in line. When my husband was diagnosed by his internist he did a skeletal x ray which showed several small lyptic lesions, our oncologist said if it was not for those he would consider my husband smoldering, so he ordered a PET scan. Last Wednesday we got the results from that and Praise Jesus he has no bone lesions, again all his numbers are good but his M Spike number had a slight rise in it, the oncologist said that the M Spike number did not justify the lower numbers in all the other blood work, he explained that it is a complex test in the lab so he is doing another blood test in two weeks to be sure it is accurate. The doctor said that my husband is basically standing on the line of smoldering /treatment......so if the M Spike number comes back the same or higher he wants us to go to MD Anderson ( which we will ) and get the opinion of a Myeloma Specialist there and if the specialist at MD Anderson recommends treatment that is what we will do, if he recommends watching that is what we will do. although my husband is not crazy about just watching he would rather have treatment. Our oncologist here in town quoted the new guidelines concerning smoldering where some are recommending treatment in smoldering but our oncologist said that he is not quite on the bandwagon yet, and I almost agree with him, I see no reason to put poisoning in one's body until completely necessary, but then it is my husbands choice. So that is where we stand at this time in our life.....Thank you all for being so kind here....Toni
Hallelujah, Toni! I was so happy to read that your husband's myeloma appears to be in smoldering stage, and that you are both moving forward with enjoying your lives! Saying prayers that the follow-up tests also show the mprotein count comes back low, but even if it does, unless your oncologist is a MM specialist, maybe it makes sense for a consult at MD Anderson anyhow? As a patient, I can understand your husband's impatience to get into treatment - I found the 5-week gap between my BMB (with 60% myeloma) and start of treatment agonizing. Likewise, I was uneasy when I finished my 11 months of treatment and suddenly was no longer on any meds. But I will tell you, it is wonderful to not be on all those drugs and chemicals and if your husband is indeed in smoldering stage and the docs don't find a compelling reason to start treating now, I would be comfortable with that - provided he has regular testing to monitor it. If he has 5 years before treatment is indicated - that's a gift.
Keep us posted on what happens with those new tests, and keep on living life to the fullest!
Tammy
Toni said:
Hi Tammy and to all here,
I am sorry I have not been keeping up with this here , my laptop has been giving me problems and to be honest my husband and I have been busy, been traveling to the northern part of our state ( Mississippi ) and attending my husbands Alma Mater college football games. We are staying as busy as usual and have decided that we are not going to let this interfere in our daily life, we are staying very positive. To catch up on what has happened , my husband had a BMB on October 1st and on our return visit to our oncologist on October 22nd we got the results, my husband has only a 10 percent Myeloma count and the numbers that define the CRAB criteria are all in line. When my husband was diagnosed by his internist he did a skeletal x ray which showed several small lyptic lesions, our oncologist said if it was not for those he would consider my husband smoldering, so he ordered a PET scan. Last Wednesday we got the results from that and Praise Jesus he has no bone lesions, again all his numbers are good but his M Spike number had a slight rise in it, the oncologist said that the M Spike number did not justify the lower numbers in all the other blood work, he explained that it is a complex test in the lab so he is doing another blood test in two weeks to be sure it is accurate. The doctor said that my husband is basically standing on the line of smoldering /treatment......so if the M Spike number comes back the same or higher he wants us to go to MD Anderson ( which we will ) and get the opinion of a Myeloma Specialist there and if the specialist at MD Anderson recommends treatment that is what we will do, if he recommends watching that is what we will do. although my husband is not crazy about just watching he would rather have treatment. Our oncologist here in town quoted the new guidelines concerning smoldering where some are recommending treatment in smoldering but our oncologist said that he is not quite on the bandwagon yet, and I almost agree with him, I see no reason to put poisoning in one's body until completely necessary, but then it is my husbands choice. So that is where we stand at this time in our life.....Thank you all for being so kind here....Toni
Hi Tammy, Toni, Rodney and everyone else kind enough to reply to me.
I am still completely in shock and overwhelmed. I got my results and some seem good and some seem bad…. So I have no idea. This is what I know……My blood results: Total protein 11.7 Kappa Lambda Free Ratio 584.21 Blood calcium 9.6 IGG 7,437 WBC 9.3 RBC 4.07 HGB 11.5 Bone marrow biopsy FISH normal result…..Plasma cell myeloma 70% Apparently, I have no lyctic lesions in my bones and the kidneys are fine. I am slightly anemic. Also, I did not have the “aggressive” chromosome.
I obtained two additional opinions… one from Stanford and one from UCLA. I live in southern California.
Two weeks ago I started on Dex, Rev and Velcade. So far I am only tired….very tired. Looking back, I know I have had this perhaps smoldering for many years ..at least seven, if not 10. I am exhausted but at least now I know there is a reason. For so long… all the doctors made it sound like I was wimpy and just getting older.
Emotionally, my life has been in a very bad place for the last several years but have had no other options. Everytime I would try to make a new situation…. My health would get the better of me. Now I know why.
15 years ago I was the primary caregiver for my sister-in-law who had leukemia and a BMT. I am not completely ignorant of some of the terms…. But myeloma seems to be a whole different animal. Plus, from what I understand, they have made great strides in treatment.
Unfortunately, I am afraid I may not have the will to fight this as I have been very anxious and depressed for the last few years and I am already very tired. My children are grown and live far away… and naturally, that puts my grandchildren far away also. Over the last few years I have been in such pain and tired…. I have basically isolated myself from all of my friends. I have not had to energy to be myself so it has been easier to just shut down. Enough of the pity party…. I just wanted to fill you all in as to what my results were. I know I should feel happy that my bones and kidneys have no damage yet….some of you would be thrilled with that result…. I am just having a hard time. I can’t even get myself out to a support group yet. I will keep trying.
Thanks for listening, Also, I am not good at navigating my way around these message boards.... so please forgive me if I pop up in the wrong places or reply to the wrong thread. :)
I'm really sorry you're having a rough time. It sounds like you're pretty much facing this beast alone, and that's gotta be tough. But this dragon CAN be slayed, if you have the will and a good hematologist & treatment protocol. Even though your grandkids are far away at the moment, it will all be worth it when you're through treatment and can be with them again, even if only for visits. Maybe this is a good time & reason to reconnect with the friends you've isolated yourself from - let them know that you've found out why you were always so tired and felt like doing nothing. True friends will rally around you. And if not - force yourself to get out to a support group, you will quickly find sympathetic new friends who understand well what you're going through. No one should fight this alone! My husband's work meant we had to uproot and move to Europe 6 years ago, so I'm being treated in a foreign country. We have some friends here, but culturally very different. And my husband travels quite a lot for his work, is here with me only about 60% of the time. When I was diagnosed, I reached out via email and Skype to some old friends in the States even going back 35 years to high school days. They've responded and embraced me and my cancer has caused a renewed friendship of 3 gals who used to hang out a lifetime ago - now we email and a couple times a month make an appointment when we all pour ourselves a glass of wine (mine was apple juice while I was in chemo) and chat face-to-face via Skype. My point is - there ARE people out there who will support you, don't be shy about reconnecting. And also about letting your kids know that you need their emotional support in a big way just now. The burden really does become lighter if you let others help carry it.
It's GREAT news that your kidneys and bones are undamaged, and even better news that you have none of the chromosomal abnormalities that give a poor prognosis! You've only been in treatment a few weeks, give it a little more time and - even though the chemo does take a toll - you'll begin to feel better as the myeloma cells start to die and leave more room for your red blood cells. With that red count, you're very anaemic - it's no surprise you're tired! Give the treatments some time, you will be amazed at what a difference it can make to your energy.