Statistics are a double-edged sword. I knew before I agreed to try a stem cell transplant that there was a chance it wouldn’t work for very long–the average autologous stem cell transplant (ASCT or SCT) only provides 18 months of respite before the myeloma becomes active again.
That means one half of recipients have transplants which last longer than 18 months–but the other half fall below the 18 month mark.
But I knew that the odds were in my favor: I had been able to achieve a complete response (CR) for over two years. According to recent research, this is the number one predictor of a successful SCT.
After relapse, the four, three week chemotherapy cycles, using the industry gold standard, combining Revlimid, Velcade and dexamethasone (RVD), had left my bone marrow cancer free. This is the second most important predictor of a successful SCT.
True, I still had a small monoclonal protein measure–and M-spike of 0.2. But all of the indicators pointed to me achieving a complete response following my transplant.
Late Thursday afternoon, I learned that not only hadn’t I achieved CR, but my M-spike had actually GONE UP TO 0.5.
Pattie and I are stunned. You know going in that there is a statistical chance the transplant may not work. As a matter of fact, that was my worst nightmare! You allow doctors to fill you full of enough high dose chemo to kill your bone marrow. You endure weeks of discomfort and nausea. Your loved ones are filled with worry and forced to drop everything and take care of you for months. And let’s not get started about the cost of the procedure, time lost from work, travel expenses, lots of co-pays and drugs.
All of that–and then the transplant doesn’t work.
Statistically, I knew there was a chance it wouldn’t last very long–or may not work at all.
Fine. It doesn’t work. But who said anything about it making things worse?
I mentioned to a good friend this morning that this is a teachable moment. There is so much share. So much all of us can learn from this.
Over the next week, I will share my deepest thoughts and feelings about what just went down. More importantly, I will cover how Pattie and I decide to approach possible treatment options moving forward.
But for now, I need to take some time to let the bad news sink-in.
Lots of drama ahead! Stay tuned while I try to make the best of a bad situation. Anyone know where I can get one of those “Multiple Myeloma Sucks!” T-shirts?
Feel good and keep smiling! Pat
October 7th, 2011 at 4:08 pm
Dear Pat…. I am sorry that you and Pattie went through the pain and suffering of the sct, only to have this result. Through it all you’ve maintained a generous spirit, sharing it all, demistifying the procedure for those of us who are or will be faced with the same decision.
Even now you’re teaching pragmatism and moderating expectations without diminishing the consistent message of hope and positive attitude that’s required to combat this beast.
Thank you for the courage you display here.
I pray for your continued strength and endurance.
October 7th, 2011 at 4:49 pm
Hey Pat,
Don’t despair yet. I think sometimes it takes the body awhile to mellow out and figure out where it’s supposed to be after the transplant. Our doc said that monoclonal bands can be unstable for the first few months, but they can continue to trend down even after the 3 month mark, which is exactly what is happening with Jerry’s (.36 for the first two months, .26 at mos. 3, and .24 at 4 mos). Did they do mm panels at mos. 1 & 2 so you can at least see if there’s a trend one way or the other? If not, maybe you’ll like what you see next month. Here’s hoping so!
October 7th, 2011 at 5:38 pm
Pat,
I am so sorry about your news. I have been reading your book and, frankly, using you to help me wrap my head around this disease since my father’s diagnosis in June. I am currently in a place where I believe we are not facing death’s door but that this disease is a nasty one requiring lots of fight. I wish there was a way to take this chapter out of your fight. Thanks for all that you do. I’m thinking of you!
Lauren
October 7th, 2011 at 6:02 pm
Hi Pat,
Very sorry to hear that your SCT didn’t achieve the expected results. Have you spoken with your doctor yet or just her PA? May she will have a better analysis of the situation? Is it possible that maybe the SCT has not had its full effect yet? Keep us posted…the MM community is pulling for you!! Steve
October 7th, 2011 at 6:06 pm
Pat, sorry to hear your bad news, but, isn’t it early to make a firm determination about the success or failure of the transplant? My m-spike remained low for about 18 months (or more?) after transplant, and then it went down to zero. It seems the high-dose chemo stays around working for a long time. And labs make mistakes. So try to think positive, and keep writing!
Barb
October 7th, 2011 at 9:11 pm
Pat,
This is heartbreaking…I am so sorry. You certainly did the homework, ran the course and followed the instructions! Thank you for sharing…in good times and bad. EZ and I will be praying for wisdom and direction as you plot the next step.
October 7th, 2011 at 11:31 pm
Pat, I’m hoping it’s too early to determine outcome. Let’s pray it’s just the difference in who is making the determination of the test. Whatever the outcome, I know you will deal with it even when myeloma sucks!!!
October 7th, 2011 at 11:32 pm
Thank you, all! Yes, it is possible my M-spike could go back down on its own. But when I suggested that to my docs, they weren’t buying it! Guess the reading actually going up 0.4 really through them.
At our meeting, I decided to wait to start any new chemo for one week to give me time to plan and process.
October 7th, 2011 at 11:40 pm
Pat. I am so so sorry. Gods plans must be different than the plans you thought were right for you. This is why we hold on to a word called “FAITH”. None of us know the path for our lives, none of us knows how to deal with the hand we are dealt in life. God knows his perfect plan for our life, He is God and we are not!
Easy for me to say, right, not suffering right now like you and Patti. Pat I am banking on the word Faith for my life. I have no other choice and will not ever think I have any answers for the pain and suffering here on earth. I know God is in control, which is great news because I would screw it up.
I will pray for peace for you and Patti. I will pray that God surrounds you with his love and grace and will help you pull through. Pat, buddy….I’m praying!!!
Deb
October 8th, 2011 at 9:46 am
So nice to hear from you, Deb! Things don’t always go as we plan… I have been fighting this thing for a long time, haven’t I? Seems like you have been writing me these kind notes forever! Hope you are well–Pattie sends her love- Pat
October 8th, 2011 at 11:46 am
A Parable for Survivors
(from ‘Inconceivable’, page 93)
There was a farmer who used a great horse to help him on his farm. One day his horse ran away. His neighbors said to him, “Farmer, that is awful. You lost your horse.” He replied, “Maybe, maybe not.”
Within a few days the farmer was surprised to find that the horse had returned — with three additional wild horses. The new horses could be quite useful on his farm. His neighbors marveled at his good fortune. “Farmer, you are so lucky. You now own several horses. You will work so much faster in your fields. The farmer replied, “Maybe, maybe not.”
The next day the farmer’s son tried to ride one of the wild horses but was bucked, resulting in a broken leg. The neighbors came to visit the farmer and said, “Farmer, this is tragic. Your son cannot walk.” The farmer replied, “Maybe, maybe not.”
Soon an army troop stormed the town, kidnapping all of the town’s young men to press into service in their war. The troop was attacked, and all of the town’s young men perished. The neighbors came to the farmer and said, “Farmer, you are so lucky. All of our sons have died, yet you still have yours because he was too injured to go with the soldiers.” The farmer replied, “Maybe, maybe not.”
October 8th, 2011 at 2:14 pm
Pat, I am so very sorry to learn about this development. I have followed your blog ever since I was diagnosed with multiple myeloma back in April this year, and thankfully right now I’m in CR after four cycles of VDD chemo. Your experience with ACST gave me the courage to finally get my stem cells collected earlier this week, but now I’m having second thoughts about proceeding with the actual transplant. Boy, multiple myeloma sure does suck! From the bottom of my heart and as a fellow MM warrior, my best wishes to you and Patti. We WILL overcome this.
October 8th, 2011 at 4:41 pm
Hang in there pat. You have been an inspiration for a lot of people and a great resource of information. My thoughts and prayers are with you always. Keep up the battle and never give up on faith,stay strong. I am sure you will look at all your options and regroup and come back more positive then ever.
October 8th, 2011 at 7:39 pm
Hey Pat ~
I wouldn’t freak out too much just yet, your body needs time to heal.
I only achieved VGPR after my SCT. Hoping for CR I was really bummed.
Over the next few months following my SCT my numbers/counts were up and down.
90 days post SCT my doctors wanted me to start maintenance , going against their recommendation, I declined.
Slowly but surely my counts started to level off and even though it took 16 months I reached CR. Doing nothing, well other then drinking warm lemon water every morning and prayer.
I will be 19 months post SCT later this month, I have lab next week for a complete MM workup where hopefully I’ll find out that I’m still in CR.
I agree with Deb….gotta have faith! Hang in there, remember giving up is not an option.
You and Patti remain in my thoughts and prayers!
October 8th, 2011 at 7:49 pm
What a wise farmer…
October 8th, 2011 at 8:07 pm
Ashok-
Please don’t let my disappointing experience prevent you from undergoing a SCT–as long as you and your doctors feel it it the right thing to do at the time. The odds and timing said it was the right thing to do… Who knew I would end up in the worst case five percent?
Nelson-
Thanks so much for your kind words… Much appreciated!
Mary-
I am going to share your story with my wife. She will be very encouraged. But I wonder, where were your numbers prior to your SCT? Like me, were your numbers actually worse following your transplant. This seems to be what’s freaking-out my docs…
October 8th, 2011 at 9:32 pm
Pat, you may remember my earlier posts. I was diagnosed in April, 2007, as you were. After 5 months on Thalidomide and dex I had my auto SCT. Then placebo arm of Revlimid clinical study and finally maintenance Revlimid. I had a VGPR. I was disappointed at first and now 4 years later we are waiting to see what my annual BMB shows (was 8% a year ago) and what if anything the .1 (to.5) increase in my m-spike is doing. Should have results early in Nov. After you process this a while you can see what your dr suggests and maybe even get a second opinion on the plan. I first started reading the debate surrounding achieving CR with that of managing a chronic disease here. I can only speak for myself but I will gladly take chronic disease whereby I respond to the treatments hopefully without the side effects knocking me down. There is of course no guarantees with side effects. Also I am 67 and I cheer on Nick’s decision to go all out with the Arkansas program. At a different time I might have done that. No one suggested that I take the route of waiting for the SCT. I know a lot more than I did in 2007—much of that is due and thanks to you. Give your body some time to see what is happening and your mind time to process. I keep you in my daily prayers. Linda
October 8th, 2011 at 11:34 pm
Pat,
Damn! Yes. Still, don’t give up the ship. Just begun to fight. Lots of bullets yet in the holster.
Remember that I did not obtain CR with my SCT. Still there was faint monoclonal protein bands after. Which really bummed me. Then, as you know, two months after all that grief my M-spike reappeared. Double bummer. However, as Kit Nowell observed above, the impact of the SCT takes some time to play out. Worth looking at again soon.
As I have high risk disease, my two doctors did not pause; in fact they had ordered consolidation therapy for me before the SCT. I did two rounds of RVD starting in March and the m-spike disappeared quickly and after three rounds the SPEP could not long find it (CR). The May BMB came back clean. I think even if the MM comes back after SCT, it may be weaker and less organized than before- vulnerable to the heavy cannons.
Consolidation therapy for you? Perhaps worth considering if your WBCs, ANCs and platelets are sufficiently recovered. Speak to your doctors.
And of course the two new “novel agents” are soon available.
Been at CR for five months now on Revlimid maintenance. My sincere appreciation for that, higher powers and lower ones. I’m trying my best to give the gift back– just you do. So now I make an appeal.
You’re on my altar until further notice.
Be excessively good to yourself.
Grace,
Danny
October 8th, 2011 at 11:41 pm
Great to hear from you, Linda! Glad you are doing so well. I don’t think anyone is upset I wasn’t able to achieve CR–although that in itself is disappointing. Sounds like you understand that…
Difference is my M-spike went UP significantly. Freaking several different doctors out. Details to follow- Pat
October 9th, 2011 at 2:04 pm
Much appreciated pep-talk, Danny! Yes, consolidation is most likely in my future–hopefully with better results…
October 9th, 2011 at 3:09 pm
Despair not for time is needed in your recovery from the massive injection of poison. I was never to gain what was hoped for as the much believed ‘complete remission’ after my august 2009 transplant and I have yet to find two people that agree on the definition of complete remission. So why do we place such importance on numbers and names? Of course they are needed to track our condition but watching these numbers is like day trading the stock market. With my numbers before and after the transplant in the .50 to .70 range I also saw no change and they have remained in this constant range for two years. However I also recently learned that they have now climbed to 1.04 almost two years to the date after my transplant. Now after two months from the doubling of the m-spike number in August I am still treatment free which initially caused some concern and questioning of the doctors protocol as to why the wait but the good side would be that I am still steroid free and thus staying at my high school weight of 180 pounds. Don’t allow what could be only a slight temporary negative to affect your thinking of a longer term outcome. I try to judge each day by how I feel and forget about what the numbers may show. Some days I feel terrible and some days I feel great. The bad days are spent away from the public where the good days I seek to accomplish certain tasks but usually find myself overdoing my abilities and thus I pay for it the next day. Live each day as if it is your last and seek out the things that make you happy. One last thought to keep in mind, you will hopefully be journeying to the great state of SC in a few weeks in order to speak with our support group and there cannot be a better place to visit but I maybe a bit biased. Too bad we can’t move the location to the coast. Hope to see you soon and hope that Pattie is part of the entourage.
Jim in SC
October 9th, 2011 at 5:24 pm
Hey, Jim-
It’s the docs who are panicking… Slides downhill, I guess. I would love to come visit your group in S.C. Has anyone contacted Millennium rep to get the ball rolling? Pat
October 9th, 2011 at 7:37 pm
Hi Pat, I’m sorry to read your latest news. It is a difficult pill to swallow when treating cancer to go through all the heartache, surgeries, chemotherpies, radiation, research, consultations, and have it fail. You and Pattie are in my thoughts and prayers.
October 9th, 2011 at 8:13 pm
Oh Lordie, Pat… I was not prepared to hear THAT news. I know you need time to think about the whack aside the head you’ve just received, and so I’ll only add that I am intending the medical team is finding a combination that works for you for the highest and best good of all concerned, so be it and so it is!
One other comment is that my relative that brought me into the MM group as a caregiver went through TWO auto SCTs which failed miserably and then had a mini-allo with a #10 relative that has kept the numbers at 0.01 for over a year. I am past the cut-off point to be a donor or I’d be beating feet to do it, but I’ll put out the intention that if that’s in the cards for you, then you find a #10 donor in a timely manner. And I know lots of people are praying for you and Pattie.
October 9th, 2011 at 10:38 pm
Lori-
If anyone understands, I know you do! Thank you. And Sandy, so nice hearing from you again. I can’t imagine going through another auto–then an allo. Your relative must be really tough! But food for thought…
October 9th, 2011 at 11:59 pm
hi pat, my heart goes out to you and pattie for all the emotional truama you are enduring right now. let me join the legion of your supporters who are urging you to step back and give the whole process some time. numbers constantly align then realign and it often takes well over a year or even 18 months to have a clear picture of where the results stand. hugh, my husband is 6 mos. post his 2nd SCT, and we have seen many steps forward, only to find at the next visit, some seem out of whack. in the end though, other numbers show progress. more than we ever could have hoped for. what we’ve learned is that we need to be more “big picture”, and not be so focused on numbers that, for good reason, may be all over the map.
October 10th, 2011 at 10:15 am
Hi Pat, I have to agree with the people who made comments here about it being too early to tell. Of course, my husband elected not to have a sct because of his other health problems since Vietnam War…so we only have 2 different treatment sessions to go by. His M-spike and IGA continued to drop for quite a few months after chemo with only 3 months treatment each time. I truly hope yours will also. Still I know it is troublesome and we will have you and your wife in our thoughts and most of all prayers.
October 10th, 2011 at 11:14 am
Thank you so much, Karen and Brenda! We all didn’t chose to join the “multiple myeloma club,” but there are some awesome members!
October 10th, 2011 at 11:39 am
Pat, I speak from a position of ignorance, however like some have said it may have worked but some residual disease has yet to leave the body, so time may tell! Also I have heard that residual disease hangs out in bone lesions, and RVd or TVd maintenance is used to hit it, should it raise it’s ugly little head. We want to keep you around because you are so valuable to the newbees, just like Barb is! Pat keep Smiling, I believe you are part of Gods plan! Gary
October 10th, 2011 at 3:06 pm
Dear Pat and Pattie,
I am sorry to hear the news Pat.But,like so many other have stated ,numbers can change, It is 1 yr next week since my STC. I am stillin cr. But, I still have Lesions which many others believe cant be considered CR, But, the Drs at Mayo and here say that is not unusual. Lots of variables. We continue to pray.
Please keep the caring bridge and e-mail.
Love Kathie Gegen
October 10th, 2011 at 3:08 pm
I have trouble with this Pat. I am going to send a e-mail..It says my comment is awaiting moderation??
October 10th, 2011 at 3:52 pm
Thank you, Gary! I plan to be around for a long time–it just may be a bit more difficult than I had hoped.
Great hearing from you, Kathie! Glad you are doing so well!
October 13th, 2011 at 1:14 am
Hi Pat, this is Chris writing from the UK. Sorry to hear about your setback. I have similar story to you. Am 44, diagnosed on Jan 2009 with IGG mm. Took CDT for 6 months which too my paraprotein from 6.4 to 0.6 ie. CR in 4 months . I then had auto STC (the BIG hope !) and was really hoping for 5 years plus. I am very fit and healthy still do Triathlons etc so thing were looking good. They couldnt read (or detect) any pp in my blood for 3 months but apparently this can happen. Then suddenly a reading 0.7 where it stayed for 12 months until my pp started to climb 1.6 within 5 months. I was put on CDR and it worked really quickly. I was down to 0.7 again within 3 -4 months. Note I declined Velcade much against advice from the US. It appears Rev is just as effective with less side effects and as its a pill it is a lifestyle choice also as I dont need to visit the hospital every week. The US prefer Velcade – the synic in me thinks this might be something to do with the fact that more money is made in the system if it has to be administered intravenously !! I am now on Rev (25mg) & Dex (20mg) maintenance but am dropping dex over next few weeks. So before you jump on Velcade bandwagon have a good look at real clyincal results of Rev v Velcade and then the list of side effects including sometimes non reversable neuropathy ! Wish you all the very best in your next treatment. Chris
October 13th, 2011 at 8:17 am
Dearest Chris-
If you exclude Velcade, you may be limiting your options. Some experience bad neuropathy, but it tends to be temporary. I have what is looking like permanent PN from using Revlimid for over four years! If you need it–use it! Here in the U.S., it is actually less expensive than Revlimid. Hate to see you hurt on principle! Thanks for reading and best of luck to you! (and me, too!)
October 18th, 2011 at 2:53 pm
Thank you so much! We all need to stick together, right?
November 10th, 2011 at 12:46 pm
Hi Pat. I just wrote to you via you Care Pages. I didn’t know about this blog. I am so very sorry to hear about your set back. However, I hope it is just that…a set back. You are an strong and inspiring person, Keep up the faith. God has everything under control! If you get time, check out what I wrote in your Care Pages. Keep the faith, we are all pulling and praying for you!
November 10th, 2011 at 1:23 pm
Thanks, Barbara! Glad you found my daily site. Hearing from you made my day!
November 13th, 2011 at 4:47 pm
Dear Pat,
This is all so new to me and I must admit, I am scared. I was diagnosed with multiple myeloma on August 15, 2011. Mine was caught randomly through a blood test. I had high proteins show up in my blood so I had a bone marrow biopsy that said I have Multiple Myeloma. I have no symptoms at all and my MM is in an idle state and for that I am thankful. My husband, Topper, and I were shocked beyond human comprehension. I am 65 years old. We have worked all our lives to get to retirement and now we have the battle of the century ahead of us facing an incurable disease. I need to connect with other MM patients as I need the support of others going through this awful thing. I am so sorry your transplant did not work. I am a Christian and believe in prayer and healing. I will be praying for you and ask some praying friends of mine to also hold up your hands and lift you up during this most difficult time. Could you please tell me about genetic chromosome testing. Should I ask for this to be done when I go to my oncologist on December 12th? Thank you for any help and insight you can give me. Cynthia Baker, Spokane, Washington
November 13th, 2011 at 5:18 pm
Dearest Cynthia-
I’m scared, too! But try to focus on the positives… As a newly diagnosed patient–using currently available drugs–chances are you will live ten years or more. Hopefully longer as new emerging therapies come along. With no myeloma related side-effects, I could argue that your “myeloma meter” isn’t even clicking yet! Sure, the inconvenience and minor pain that goes along with all of this isn’t any fun. But there isn’t any reason you can’t live a long and productive life–sort of like living with diabetes.
I am writing a series of articles about stats and median life expectancies the next few days. Please take these with a grain of salt. Truth is myeloma patients are outliving the stats and it takes them time to be adjusted upward. Patients much older than you die from a variety of related or unrelated causes, putting downward pressure on the stats.
Please be hopeful! Best of luck and keep my updated on your progress, OK?
November 15th, 2011 at 3:02 am
Thank you for your response. I have been in contact with Ed Wolfman and he has been very encouraging and upbeat with lots of info that is very positive. I am very hopeful that my MM will stay idle and not give me any problems for many years to come. I have a strong faith and lots of praying friends and I fill my spirit with healing scriptures everyday.
I will continue to check up on your blogs and continue to pray for you. Thank you again for your caring concern. I will let you know what my blood work is when I get the results. Thank you. Cynthia
November 15th, 2011 at 11:49 am
More good news, Cynthia! Sounds like your myeloma is “smoldering.” That means you may not even need treatment yet. Until you do, that meter won’t start clicking. You should be around for a long, long time…
November 23rd, 2011 at 2:45 pm
Hi Pat,
I just wanted to let you know how much your site means to me, and how generous and wonderful you are sharing your experiences with everyone who can (and does!) benefit from them so much.
My husband is around 30, and he has meyeloma. You can pretty much imagine our feelings – your blog was the first thing I read that made me feel like ‘I can deal with this’. I love the way you explain things really clearly, and I know this sounds cheesy to say but you have changed my life (and lots of other people’s too I bet) with the wonderful way you have responded to this #%@^$ thing. You are all the way on the other side of the world, we will probably never meet each other, yet your posts can inspire and help me so much… I love the internet sometimes!
Be strong – I bet there are way more people even than you think who are reading your blog and wishing you well! And you have changed the world for the better already! Long may it continue
November 24th, 2011 at 12:42 am
How kind! Knowing I can help–even if just a little bit–is what I’m living for. Best of luck to your husband…
December 4th, 2011 at 3:15 pm
Hi Pat
I was diagnosed August 29th via CT scan. It showed a moth eaten vertabre on my spin and holes in various bones. Later tests ( bone marrow biopsy ) revealed stage 11 myeloma. I had been ignoring pain and getting iron pills for anemia for months. With no insurance I guess no one was interested in pursuing more work up. I was always sent away from the hospital with prescribed pain meds. ( motrin ). I tried a different hospital in August that took the time to read the scans. I was seen by a social worker soon after who put me in a program that pays for all mm treatments until I’m scheduled for stem cell. I’m 63 and was told I would need medicare or medicade. I’ve completed the necessary applications. I’m currently on my third chemo consisting of velcade injection (bortezomid), dexamethasone (steriod ) 20mil day of and day after chemo by mouth and cyclophosphamide by mouth. I haven’t experienced any horrible side effects I’ve been reading about, and include daily prayer and study of the bible as the main part of my treatment. I am a Christian and take hold of the promises God made in His Word for healing. Your blog isa blessing in helping me to understand
mm. I have my numbers but don’t know what they all mean yet. My doctor told me this is 90% treatable. May I email my numers to you for explanation? May I have your email? Thanks. My prayers go out to you and your family on this mm journey.
December 4th, 2011 at 7:59 pm
Colorful description–”moth eaten.” More like “myeloma eaten”… Me too! Of course you can email me anytime, Patricia: Pat@helpwithcancer.org. Your doc certainly has you on a heavy duty treatment regimen.
December 16th, 2011 at 1:26 am
Hi Pat, I must say in reading your blogs that you sound very exhausted and tired. Thank you so much for all your blogs and updates everyday. I read every word and you bring everything in such an understandable manner and very complete. I have great news. My numbers have gone down and my doctor is still not going to do anything in regard to treatments. It is smoldering and said I could live forever with it like this. I certainly hope so. My husband and I are leaving after Christmas to go to Tucson in our fifth wheel and enjoy the sunshine and warm weather for three months. It will be fun and we plan to enjoy our time away from the usual day to day activities at home. Thank you again. I am taking my laptop and will check in on your blog everyday. Keep your chin up and I am praying for you everyday. Cynthia – Spokane, WA
December 16th, 2011 at 9:55 am
What awesome news, Cynthia! Warmth and warm weather feels so good to me now. Ours in unseasonably warm here and forecast to stay near 80 degrees most every day for next week. I’m doing OK. But yes, I am a bit tired of it all. Thanks for caring and reading–glad I can help–and thanks for great news!
December 31st, 2011 at 11:37 am
Hi Pat. I must say that I haven’t checked your blog for some time. I went into remission after my transplant (when we met) in July. After 3 months, I had a second (tandem) transplant. Boy, what a nightmare. I did well after the first one, so I thought I knew just what to do for the second. Was I ever wrong! I was sick every day. I tried to sleep most of the time because I couldn’t stand being inside my skin! I wasn’t able to eat a thing so they had to put me on intravenous feeding! My numbers came back quickly and they let me go to the apts. I felt so horrible! I couldn’t do anything. When I went to the outpatient BMT for fluids, they had to put me in a bed because I couldn’t even sit up. After about 3 days of this, my PA decided there was something very wrong. He did some tests and discovered that my pic line had given me a blood infection. They had to readmit me to the hospital for 3 more days and gave me tons of antibiotics! When I was released from the hospital and back to the apt., I started to feel better. Three months later, I am doing great. Was just at Moffitt on Wed. & Thurs. and I am in CR again! I was able to start my maintenance on Thurs. Since I am on a trial, I have to go back every month for tests and my pills. I am on Lenalidomide (Revlimid) every day for 4 years! That is part of the trial. The main side effect of the transplants is my neuropathy in my legs. I have no feeling in my feet and My ankles and legs hurt, but that doesn’t stop me from doing things. I have been doing a lot of shopping and next week, we are going on a cruise. The Dr. actually gave me permission to swim (the pool or ocean)! I hope my experience on this trial will be able to help come closer to a cure for MM! If so, it was so worth it! How is your ear doing? Have a happy & HEALTHY new year! I think about you often.
Barb -The Villages, FL
January 1st, 2012 at 11:27 pm
Dearest Barb-
I so understand what you went through! Sounds like my first SCT was a lot like your second. Lots of nausea which lasted for months. Glad you are in CR–and glad you feel good enough to go on your cruise! I think about you often, too. I understand you live a long way from our meetings, but I hoped to see you once in a while… Now I know why that would have been difficult! The Revlimid maintenance isn’t a bad idea. Stats show a real advantage to doing that. So let Celgene pay the bill and enjoy the next two, three, four or more years! By then lots of other therapy options…
March 10th, 2012 at 4:45 pm
Hi Pat-
My husband did tandem transplants in 07 & had much the same response you did. He never reached CR, numbers were similiar but fell way down the road. He never reached CR & was on Revlimed/Dex for years. Switched to Velcade because of neurapathy/response. He is “stable”, numbers go up & down but he still works full time. IVIG monthly during flu season. He’s had pnuemonia right before transplant. We have followed our trusted drs advice. Don’t get hung up on numbers. It proved to be worrisome & fruitless. They do fluctuate. We rarely look now, trust our doc & instincts. When he doesn’t look/feel good, I talk to dr. When he looked bad, the numbers were fine! Ended up changing in a few weeks/mos. I increased his Vit, fruits/veg, a few days off, more rest & stayed away from germs. It’s worked for 4 yrs, 10 mos & counting. Eventually, the good Lord will be ready for him (even if we’re not!). My father also died of MM in 1996 (MM/kidney failure). Things have changed soooo much. Most patients die of infection now rather than MM but survive so much longer & live better lives. New treatments/drugs all the time. Don’t sweat the numbers & keep the faith. God Bless, Adrian
March 11th, 2012 at 2:57 pm
Great advice, Adrian! But don’t forget I went into SCT with almost no tumor burden and emerged with an almost angry response. At this point, I’m OK with numbers because my response was swift and heading in the right direction…