Today was Tim's oncology appt. He goes every three months and we pushed this off just a bit as he was due when we went to Disney. We saw the original doctor that he started with there. We've seen him a few times to say hello but have not had an appt. with him in 3 years since he last did a bone marrow biopsy on Tim just as that pilot landed a plane in the Hudson River. Note: they were trying to get him to land in a small airport right near the doc's office where we were but he couldn't make it. Anyhoo, I warned Tim to take any negative comments with a grain of salt from this doc. Don't get me wrong, I LIKE this doc a lot
but he said some very grim things to us a few years back and he was wrong about several of them. Kinda sucks when you live through the grief of dealing with that for nothing. So he comes in, we exchange pleasantries. I said, "Did you miss me?!" He said, "Who the hell are you?!" He's a jokester. Then he starts to say that the really strange thing about Tim's labwork............PAUSE- I am already thinking "HOLY MERDE, here he goes already. STRANGE, what's strange? I read the reports. It looks great." So he says that his immunofixation and SPEP show this slight band BUT
the immunoglobulins are trending up. I'm thinking "WHAT, whaddaya mean they're trending up?" Then his head nurse says, "The uninvolved immunoglobulins are going up!" When we finally got to where he was going
with this, what he meant was his IGA and IGM are in normal range, not below normal like they used to be. The IGG's are the ones that were WAY high at dx, but the others were low because the cancer affects the bone marrow's ability to make healthy cells and is too busy making the bad guys. They are all in normal range now. Whew. He scared the heck out of me. The doc explained that this meant his immune system was working really well and that even though his m-spike test is no longer zero, all the rest of his tests point to the fact that his MM seems to be inactive still. He said it's a VERY good sign to see these immunoglobulins in normal range and it really negates the m-spike test showing anything. Kinda. OY. Thank goodness. So then I ask him something that has been on my mind for a long time. When I told him, 3+ years ago, that we were not sure we wanted Tim to be revaccinated after his SCT, he said, "I'm fine with that." Some MM docs don't do this. Tim's transplant docs rec. it but I was afraid of the effect as I'd heard from people who blamed their relapses on it. I then asked the doc about tetanus. Tim cuts himself a lot at work. He said, "I'm not worried about that shot either." I was surprised. I had read that once you get tetanus, it's 90% or more fatal and said somthing to that effect. He shrugged and said he was not worried. I wondered if this was another illness that is really not seen these days, but I didn't think so. I think you can get this from soil, etc. So, just before he walked out of the room today, on a whim because it never made sense to me, I asked him about it and he says, "Of course he needs a tetanus shot! with what he does for a living!" Tim proceeds to show us where he pulled a huge splinter out from under his fingernail just today. I was like, "BUT YOU SAID...." He said, " in the context of being vaccinated after SCT, I was not worried about it. But if it's been past the amount of years that he needs a tetanus shot, you better get him a shot before he gets tetanus."
Holy cow, did I feel like a boob. I had not wanted to get any shots he didn't need, especially after we had
3 friends relapse right after getting all their shots. He's gotten the flu shot every year and just got the pneumovax shot a few weeks ago. I've not wanted to mess with this remission by messing around with his immune system too much. I've been wracking my brains now about when he got his last tetanus shot. I finally remembered he had it done in a hospital ER when he had an infection in his knee so even though I'm getting
him a shot(he has had an SCT in between so there's every chance his immunities to it are gone) I'm gonna
call them and see what year that was. If it hasn't been 10 years, it's gotta be close. I think I'll get one now too. I can't remember my last one. I think I'm passed 10 years. I tell ya, I was just at my MM support group yesterday saying how scary it is to be the one researching and taking so much responsibility for his health and a man told me that he felt sorry for me because he sees that I have immersed my life in cancer and don't even have it. And, it's never enough. I still made a BIG boo boo and my husband may be walking around in real jeopardy. UGH!!!! I was in shock when I left and it was just because the doc had not elaborated. Too many balls in the air. So scary to think that if you miss catching one, it could be a life or death situation. Any wonder my hair's turning gray?
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7 comments:
Hi, I was diagnosed in August, 2011
at age 49. I have a wife and two kids. I still work too. I live in South Jesey near Philly so I go to UPenn and also the NIH where I am in a study of myeloma. I just wanted to say thanks for your blog which I found surfing the net. Good luck to Tim! His doctor seems like a character but what were the grim things he said originally? I hope it wasn't the statistics.
Hey Terry, I think you and I "met" through the ACOR listserv and I talked you into having a consult with our docs up here in North Jersey. It was Doc. S. and no, his grim things were NOT about statistics. When Tim's transplant failed completely, he told us that he believed Tim had aggressive disease, despite a favorable chromosome analysis, and that he didn't think he would respond well to any of the other drugs well if he didn't respond to Melphalan. He thought Tim was in big trouble. When Tim went into CR from only 4 cycles of Velcade/Dex, he told us this did not mean much(he thought it was a fluke). When another MM spec. told us to stop the Vel/Dex and see what happens, this doc said his numbers would most certainly rise. And when he did that bone marrow biopsy in Jan of 09, he said, "don't hold your breath" because he doubted it would show up clear of MM. He was wrong about ALL these things! It's not that I don't think he is an excellent MM doc, he is, and I'm sure that he has seen so many patients have the exact outcomes he predicted for Tim, under those same circumstances, BUT MM seems to behave SO differently in people that you just can't throw predictions around. I also personally think God has something to do with all this so one never knows what the future holds. Glad to "see" you again. Hope things are still holding steady for ya. Tim has been chemo free for almost 4 years and feels good so have hope, Terry.
Hi, I do remember you now from the ACOR list. I must be having a senior moment---almost 50! I was dx. 8/10/11 and am considered smoldering with a high risk for progression. So far, I have no CRAB symptoms except mild anemia. Both Dr. Stadtmauer at Penn and Dr. Landgren at the NIH still say to watch and wait. I am happy to comply! If I am still smoldering in a couple months I am going to try to get into a vaccine trial for smoldering MM out of Boston. It is designed to try to halt progression. I am so happy to hear that Tim is doing well and still working. Thanks for your blog and i will continue to follow it. Say hello to Tim for me. Terry from Haddonfield, NJ
I went to my oncologist this week too. I asked him abput getting reimunized. He said that I did not need them. That in the 5000 mm patients he had treated he had never had one of them contract any of the childhood diseases that these immunizations protected against. Thought you might be interested. Congrats on your good news!
I have been following your blog since my dad's dx in November 2008. I truly enjoy your sense of humor and I can relate to all your fears. My dad has same doctor as your husband. Sometimes I dont know how to take him. My dad is just starting to relapse after 29 months after stem cell. He will be starting Revlimid this week. I always worried about those immunizations affecting his complete remission. He just got the last round in August and by October his numbers started to rise. I also wonder how good they are and if they are really needed. Thanks again for your blog. You put in written words that I think about all the time. There are just so many variables with this disease and I just hope we are making the right decisions. All in all it is just a crap shoot.
Great news on Tim's figures. I have to admit it's crossed my mind that I relapsed last Jan/Feb after having my first re-imunisation in the previous Dec. :D
Anonymous, I am wondering if I know your dad. Would love to "talk" to you via e-mail. Mine is tdos59@optonline.net. Drop me a line. As far as how to take Doc. S. He is an MM genius. I don't know why he says such pessimistic things but I think/hope he has improved from this time 4+ years ago that I spoke about. Also, as far as re-immunizations causing relapse, this doc told me he thinks it's just coincidence. The reason he doesn't push re-vaccination, I believe, is that MM'er many times can't build up the immunities from the shots anyway and that these diseases are rarely seen in this country, with the exception of Pertussis(whooping cough) which has sprung up a bit. One of his own nurses had it a few years back. That disease was more dangerous for infants.The average length of remission from SCT is about 2 years, and obviously, a lot of folks don't even stay stable that long so it is not a stretch to think that they were coming out of remission and the shots had nothing to do with it. I know SO many people who got the shots and were fine, but wondering if it caused a relapse would have bothered us too. I've said this before, MM treatment is chock full of gut-wrenching decisions. I've had a break from that for a few years and do not look forward to doing it, when needed, again. I've seen Tim's doc help walk a VERY sick gentleman to a room right past where Tim and I were sitting. The look on his face told me all I needed to know. He may not always say the right things, but he cares....deeply.
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