Hi!
My name is Debbie, I am 61, live in Wisconsin, and I was diagnosed in May, 2015, with myeloma.
I have been very thankful to all who have posted about their stem cell transplant journeys here on the forum, and I want to return the favor. It was so helpful to read from all of you about your experience. It is a very scary time and so many unknowns. This first post recaps everything I have experienced so far through my stem cell harvest and I am now awaiting my actual transplant.
My specific diagnosis is osteosclerotic myeloma, which is an extremely rare form of the disease. I haven’t met anyone else on the Beacon who has this form of myeloma, but I would sure be interested to know if there is anyone out there. It is very much the same as POEMS syndrome (equally rare), but I haven’t had any neuropathy (thank God!!) which is a hallmark of that syndrome. It took 4 months, and 2 bone marrow biopsies, several scans, and another bone lesion biopsy to come to this diagnosis, as things just didn't line up for traditional myeloma, and I had the doctors a bit baffled at first.
I have done 4 rounds of cyclophosphamide, Velcade, and dexamethasone (CyBorD) over the past 4 months, which has reduced the myeloma. The decision to do the chemo was based on the bone lesions and the consensus that they were due to the myeloma.
My last bone marrow biopsy in January came back clean, although there is still a 0.41 g/dL M-spike in the blood, which is very small.
Fortunately, the past rounds of chemo hasn't seemed to affect my overall health. I have been able to teach my Zumba classes, babysit my beautiful grandchildren, ride my horse, and pretty much do everything that I enjoy!
My next treatment will be much more intensive - autologous stem cell transplant - scheduled for melphalan February 22 and transplant on February 24. Since we live within 30 minutes of a great myeloma facility, I will do the transplant as an outpatient, with my husband watching over me to be sure that things go smoothly. (He is WAY more organized than I could ever hope to be, so I am in good hands!)
Jan 6 - Day of Testing
This was a day of testing beginning with the bone marrow biopsy (BMB). I had 2 previous BMBs where they used propofol - I highly recommend this if you have the option. It does require an anesthesiologist, but you will be out quickly and wake up refreshed. This was not an option at this new location, but I asked for the maximum possible sedation (twilight and a local - I’m not sure of the exact name of the medication) and I was VERY nervous about this procedure. They were very experienced - I was put out and don’t remember a thing - perfect!
Other tests were very easy - x-ray, heart scan and lung function. Only weird thing was that they discovered that I was neutropenic. My white count had gone from 17,000 down to 325 in a matter of just a couple of weeks. SO, now we are pretty much avoiding everyone just to be safe!
Amazing, when you are house bound, and finally just taking some time to slow down and look around, you see stuff! Yesterday morning, I looked out the window, and there was a bald eagle on the tree outside! This is not a normal occurrence, so I am taking this as a very good sign!
January 7
I began taking Claritin (loratadine) in preparation for my Neupogen shots. It’s been noted that this somehow helps with preventing bone pain. So I will take one each day during the shots
January 9 - Neupogen shots
Yay! Today I got my Neupogen shots! - in the belly of course! - just after I had all healed up from the other injections each week in my belly during my chemo. (They like to call it an 'injection in the belly fat' - to add insult to injury? LOL oh well, whatever. I DO have belly fat.) Well, the needle is teeny tiny so it is OK. AND, now it can do it's magic and bring up my white blood cell / neutrophil count! So - go to work Neupogen!
I will get these shots everyday now until the stem cell harvest which is scheduled to begin Wednesday, January 13. The Neupogen makes the bone marrow work extra hard producing new white blood cells, it also releases more stem cells into the blood stream for harvesting. They like to harvest enough stem cells so that they have more on hand for a second possible transplant still left in the freezer. I had read that some people experience bone pain after receiving these shots. I really didn’t seem to have any problem with this - maybe a bit of stiffness in my back, but not really an issue.
January 14
Well, yesterday was a big day at the hospital - Stem Cell Harvest Day. We've been using this 'harvest' word a lot lately in talking with the friends and family, and it sounds like some farm community festival celebration!
Well, I started out the day being nervous about the placement of the mahukar catheter, which is a big IV line that is placed in your neck to access the jugular vein. It branches off into 2 lines, one for blood to go back in, and the other for blood to come out. They gave me an anti-anxiety med prior to placement (which I had requested!) and then just one local shot (which numbed everything up right away, so really was nothing). The doctor who placed the line was really skilled and had everything finished in 2 minutes. Easy, DONE. Don’t be worried about this, I was worried, but it really was no big deal, I just felt some pressure, but absolutely no pain.
The machinery that is used to separate the stem cells from the rest of the blood is amazing. Very interesting to watch the lines go out, into this big machine which spins everything to separate and then it comes out in 3 separate lines - red cells - plasma - stem cells - and they collect the stem cells. The procedure is completely painless - I read a book, watched TV, and took a nap. They add an anticoagulant to the blood which does tend to deplete your calcium, so I got to snack on some Tums during the procedure. Bob and I ordered lunch, and pretty much just relaxed.
I was thinking that I might not have enough stem cells because I had been neutropenic last Tuesday, and one of the nurses mentioned that my cell count might not be high enough to get very many harvested. But, those shots of Neupogen really worked to bring the counts up! I was able to harvest 14 million cells in one day. Typically it takes at least 2 days to get that many, so I'm really happy about that! That is enough for 3 transplants (they freeze them for your lifetime, and then if I need another transplant several years from now, (which can happen with myeloma), they will have them ready and waiting).
So, big check mark DONE on my transplant 'to do' list.
Now, I have a little over 2 weeks with no medicine or procedures until the day of transplant - Feb 1. I wonder if they will move the date up? I wouldn't mind that, just get it done!
If not, I will just take the next 2 weeks to get a few things done.
January 16
My neck is now clear! - no longer scary. They pulled out the line without any discomfort at all, and now I can sleep comfortably once again. Because we only needed one day for stem cell harvest, there is a possibility that we may move up the transplant date a bit. Right now it is scheduled for February 1. I haven't heard anything back from the doctor yet, so we are just waiting to hear. Also, the results of the bone marrow biopsy were excellent. Initially, when they had done the biopsy back in May, they found 25% involvement. This time they found less than 1%. Now, myeloma is 'patchy' so you can hit areas where there may be more or less cells, but this biopsy is a very good sign that all of the medicines have been doing their job.
So, for the time being, I don't need any medicine, I don't have any lines sticking out of my body, and I feel great. Maybe I can try to sneak in one more visit with my beautiful grandkids before risk of catching something would be too close to transplant date ...? I'd love to do that. I haven't put myself into total isolation just yet. We had dinner out on Thursday.
January 18
Well, thought we could maybe squeeze in one more visit with the grandkids, but they made the decision for us. She woke up Saturday with a fever - definitely staying away.
So we visited on FaceTime instead! The girls were so cute, Saturday afternoon they showed us how they could run into a brick wall (cardboard) and smash it. Then, Sunday they kept me on FaceTime all day long. If I mentioned that my battery was getting low, she would come up with the solution - 'Ask Grandpa if you can use his iphone." And, of course we went through both of our batteries and the battery on her iPad. She read me stories, built me a 'fort' out of cardboard bricks and put me inside, had Daddy build another brick wall so they could show us how they could smash it (a favorite game), played barbies, did art projects, sat on the couch and drank some juice together, watched tv, watched me cook, ate dinner together. Then when we said it was time to say goodbye,they both chimed in with "NOOO!!". The iPad and FaceTime is definitely a hit and I will rely on it heavily over the next few months!
January 22
There is one other casualty of my myeloma, and that is my beautiful sweet horse, Mona. Hay mold, manure, dust in the riding arena ... all are and will be problems for me during the transplant. Since I am scheduled for next week, I am now staying away so that I’m not inhaling all of those tiny particles.. My good friends and family will have to give my best friend in the animal world my love and any attention that they can. I already miss her more than I can say…
January 27 - Murphy’ Law
So, about a week ago I developed a little cough. By Sunday, it was a big, rattly cough (the kind where you would avoid going down the aisle in the supermarket to avoid THAT person). On Monday we had the meeting with the stem cell transplant team. So, they cultured for a virus. Even though Bob and I have been so careful over the past month!
Well, the good news is that the culture came back negative - NO virus! But, the bad news is - I still have this unexplained cough. So, in order that we can rule out any type of bacterial issue, they are delaying the transplant. I'm scheduled for a CT scan of the chest this Friday, and with the ear, nose, and throat specialist on Monday. Once this cough gets under control, we can move forward with the transplant.
So ... best laid plans ...
February 3
So, I had my appointment with the ear, nose, and throat specialist to check out my cough and was diagnosed with larynogopharyngeal reflux, a type of reflux with no real symptoms other than it causes inflammation in the throat and vocal chords, which can cause chronic coughing etc and, even, asthma-like symptoms. So that explains a lot of why I have had this issue with coughing and hoarseness over the past few years. Protonix and diet changes should help that. So, not a virus, and not bacterial, which means it won't affect stem cell transplant. Also, my CT scan was clear, lung in good shape.
So, they have rescheduled my transplant - February 22 I will get the melphalan (heavy chemo dose) and February 24 they will transplant my stem cells. I am also part of a study trial where they will give me propananol (a type of anti-anxiety med) seven days prior to the transplant and continue it for 30 days afterwards. The study is to see if this drug would help to inhibit the growth of cancer cells and then add to the length of remission. So that is a good thing!
So anxious to get ON with this!!! But, will need to sit tight (and not get sick) for the next 19 days! Bob and I have started doing a really hard 2000 piece jigsaw puzzle, will pull out the cribbage board and play some pool. I am doing Zumba in the exercise room, and working with the resistance tubing every day! Our grandkids have learned about Facetime and I spend time with them every day! Love it!
February 7 - Alone
So after the cough de-railed all of our plans, we are pretty much just staying put for the next 2 weeks so that we don’t catch anything!! I sure don’t want to have to reschedule this again. AND, it is flu season here in Wisconsin. So, Bob is only going out to do the grocery shopping and we are pretty much just avoiding people for now. Might as well get used to that for awhile, I guess…
February 10
I will update this journal as we get into the nitty gritty in 12 days..
Forums
Re: Debbie's Stem Cell Transplant Journey
Hi Debbie,
Many thanks for sharing your experience thus far and best of luck in the rest of your journey!
You may find some links to some other folks with sclerotic lesion presentations by using the advance search feature of the forum and searching on "sclerotic" and limiting the search to message-text-only. Abbreviating the search word to "sclerotic" instead of "osteosclerotic" will also give you a lot more hits on google - but I am guessing you probably already figured that out
Many thanks for sharing your experience thus far and best of luck in the rest of your journey!
You may find some links to some other folks with sclerotic lesion presentations by using the advance search feature of the forum and searching on "sclerotic" and limiting the search to message-text-only. Abbreviating the search word to "sclerotic" instead of "osteosclerotic" will also give you a lot more hits on google - but I am guessing you probably already figured that out
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Debbie's Stem Cell Transplant Journey
Debbie thanks so much. My husband has just completed his first cycle of CyborD and after 3 more it will be transplant time for us. I look forward to your further post. Good luck!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Hi Debbie,
Good luck with your upcoming autologous stem cell transplant. My wife had her 1st transplant 3 months ago and it wasn't too bad. She's just completed her 2nd transplant this week and so far found it easier than the first. Here are some observations you may find useful.
Outpatient is great as you reduce exposure to nasty bugs in the hospital. Usually takes about 14 days to start rising from the lows of neutropenia. Exercise is very helpful in accelerating your progress which is why outpatients improve faster than in-patients.
Presume you'll be eating many mouthfuls of ice before and during the melphalan. That'll help significantly to reduce the mucosis. If you have sensitive teeth you might consider getting mouth guards to cover your teeth; just make sure they don't cover the gums.
Transplant length itself is dependent on how many bags they've collected. You may feel cold briefly, your head may feel something from the cold, and likely an odd taste in your mouth because of the preservative.
Her experience driving to/from the hospital was that Gravol (Dramamine, dimenhydrinate) was the best anti-nausea medication for motion sickness. This is in addition to other anti-nausea medication.
It'll be a distant memory shortly after the transplant!
Good luck with your upcoming autologous stem cell transplant. My wife had her 1st transplant 3 months ago and it wasn't too bad. She's just completed her 2nd transplant this week and so far found it easier than the first. Here are some observations you may find useful.
Outpatient is great as you reduce exposure to nasty bugs in the hospital. Usually takes about 14 days to start rising from the lows of neutropenia. Exercise is very helpful in accelerating your progress which is why outpatients improve faster than in-patients.
Presume you'll be eating many mouthfuls of ice before and during the melphalan. That'll help significantly to reduce the mucosis. If you have sensitive teeth you might consider getting mouth guards to cover your teeth; just make sure they don't cover the gums.
Transplant length itself is dependent on how many bags they've collected. You may feel cold briefly, your head may feel something from the cold, and likely an odd taste in your mouth because of the preservative.
Her experience driving to/from the hospital was that Gravol (Dramamine, dimenhydrinate) was the best anti-nausea medication for motion sickness. This is in addition to other anti-nausea medication.
It'll be a distant memory shortly after the transplant!
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Debbie's Stem Cell Transplant Journey
Thank you so much for your replies and input! The information on this forum has been so helpful to me! SK1- I am curious about your wife's second transplant. Was this planned ahead as a tandem transplant? I have wondered about that and when something like that might be considered.
Thank you again! Deb
Thank you again! Deb
Re: Debbie's Stem Cell Transplant Journey
Thank you, Debbie, for sharing your stem cell transplant experience with everyone. I'm looking forward to following your postings as you go through your transplant, and I hope it is not too challenging for you and that it really knocks you multiple myeloma back.
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JimNY
Re: Debbie's Stem Cell Transplant Journey
February 26 - Delayed again!
Well an update - I am still waiting on my transplant. I work in a gym, teaching fitness classes. So, in January, I stopped teaching classes and I stopped babysitting our toddler grandkids because I wanted to be sure that I didn't catch anything prior to the transplant. It seems that when I catch a virus, it lingers for a long time with bronchitis-like symptoms.
Well, best-laid plans - my February 2 transplant date was pushed out to March 2 because I did develop a nasty cough (turned out to be laryngopharyngeal reflux). Then, the past 2 weeks, I noticed some tooth sensitivity. So ... this past Monday I needed a root canal, and then on Wednesday I had a molar extracted due to a small chronic infection. Now, my transplant is rescheduled for March 16 (melphalan), March 18 transplant.
So, the waiting continues. I will keep you posted!
Well an update - I am still waiting on my transplant. I work in a gym, teaching fitness classes. So, in January, I stopped teaching classes and I stopped babysitting our toddler grandkids because I wanted to be sure that I didn't catch anything prior to the transplant. It seems that when I catch a virus, it lingers for a long time with bronchitis-like symptoms.
Well, best-laid plans - my February 2 transplant date was pushed out to March 2 because I did develop a nasty cough (turned out to be laryngopharyngeal reflux). Then, the past 2 weeks, I noticed some tooth sensitivity. So ... this past Monday I needed a root canal, and then on Wednesday I had a molar extracted due to a small chronic infection. Now, my transplant is rescheduled for March 16 (melphalan), March 18 transplant.
So, the waiting continues. I will keep you posted!
Re: Debbie's Stem Cell Transplant Journey
March 16 - Day -2 - High Dose Melphalan
Hi! Its been awhile since I posted as my transplant was delayed almost 2 months – first due to a cough, and secondly due to the need for a tooth extraction and 4 root canals. Don't know why all of this manifested itself in such a short period of time - but I'm glad it did!! Could have caused serious complications during transplant.
SO - FORWARD! I received my high dose chemotherapy (melphalan and dexamethasone) on Wednesday - March 16. The day started by putting in a PICC line (a semi-permanent IV line in my arm that will remain for the next 2-3 weeks or so). This was painless - although they put you in a surgical room and drape you like this is going to be major surgery! LOL The whole process takes about 45 minutes with the draping and prepping etc. But then it is a tiny shot of lidocaine and the process takes about 2 minutes - done! Truly - this part is nothing - no worries!
Then into the day hospital. I will receive my treatments here as an outpatient, but have a private room assigned just for our use that I will come to daily. It is nice to come home each day (about a 40 minutes drive), and they are finding that patients recover more quickly. But, I need to be close enough because there can be things needed like blood transfusions and possible complications. I will also be on heavy duty antibiotics as infection is always a concern. But the room is really nice and the nurses and doctors are in constant attention.
Getting the melphalan was a bit overwhelming. I wasn't quite prepared for the chemical taste and overall pervasiveness of the feeling of getting this toxic medicine. LOL, made me feel REALLY TOXIC! Immediately, my perception of the room changed and I felt like I was exuding - I don't know - just lots of chemicals! Anyway - GOOD - this is strong stuff and it will kill any remaining cancer in my body.
The whole process was 15 minutes! Then, they observed for 2 hours (me playing my video game and Bob reading, LOL - we are highly entertaining!). Oh, and they gave me a ham sandwich. And off to home! I felt a little light headed, but all in all just fine! No nausea or other issues. So lucky me. I took the Ativan (lorazepam) (anti-nausea / anti anxiety med) before bed just to help with sleep and potentially ward off any nausea. I slept good!
We went back in to the day hospital yesterday for a dose of dexamethasone (this is to help with any nausea issues, etc). Short visit to have my labs checked, etc - ALL GOOD. Good appetite and feel, actually, normal - great.
Tonight, I am awake at 2:30 am - thank you to the dex. And this morning is the big day - I GET MY STEM CELLS BACK! It is called a new birthday - so we will celebrate that. Since they harvested them at a very low point of myeloma impact (after my initial 4 rounds of chemo that I had received back in the fall/winter), they contain virtually no myeloma - just some trace below 0.38 and my bone marrow was down to less than 1%. That is the goal - starting from a point of remission. Since the melphalan wiped out any other myeloma in my bone marrow and blood, I will be starting from a very good point.
I will keep you posted on my experience throughout this process! Thank you for your well-wishes, prayers, and general good JU JU! I am staying positive and looking forward to a wonderful remission!
Hi! Its been awhile since I posted as my transplant was delayed almost 2 months – first due to a cough, and secondly due to the need for a tooth extraction and 4 root canals. Don't know why all of this manifested itself in such a short period of time - but I'm glad it did!! Could have caused serious complications during transplant.
SO - FORWARD! I received my high dose chemotherapy (melphalan and dexamethasone) on Wednesday - March 16. The day started by putting in a PICC line (a semi-permanent IV line in my arm that will remain for the next 2-3 weeks or so). This was painless - although they put you in a surgical room and drape you like this is going to be major surgery! LOL The whole process takes about 45 minutes with the draping and prepping etc. But then it is a tiny shot of lidocaine and the process takes about 2 minutes - done! Truly - this part is nothing - no worries!
Then into the day hospital. I will receive my treatments here as an outpatient, but have a private room assigned just for our use that I will come to daily. It is nice to come home each day (about a 40 minutes drive), and they are finding that patients recover more quickly. But, I need to be close enough because there can be things needed like blood transfusions and possible complications. I will also be on heavy duty antibiotics as infection is always a concern. But the room is really nice and the nurses and doctors are in constant attention.
Getting the melphalan was a bit overwhelming. I wasn't quite prepared for the chemical taste and overall pervasiveness of the feeling of getting this toxic medicine. LOL, made me feel REALLY TOXIC! Immediately, my perception of the room changed and I felt like I was exuding - I don't know - just lots of chemicals! Anyway - GOOD - this is strong stuff and it will kill any remaining cancer in my body.
The whole process was 15 minutes! Then, they observed for 2 hours (me playing my video game and Bob reading, LOL - we are highly entertaining!). Oh, and they gave me a ham sandwich. And off to home! I felt a little light headed, but all in all just fine! No nausea or other issues. So lucky me. I took the Ativan (lorazepam) (anti-nausea / anti anxiety med) before bed just to help with sleep and potentially ward off any nausea. I slept good!
We went back in to the day hospital yesterday for a dose of dexamethasone (this is to help with any nausea issues, etc). Short visit to have my labs checked, etc - ALL GOOD. Good appetite and feel, actually, normal - great.
Tonight, I am awake at 2:30 am - thank you to the dex. And this morning is the big day - I GET MY STEM CELLS BACK! It is called a new birthday - so we will celebrate that. Since they harvested them at a very low point of myeloma impact (after my initial 4 rounds of chemo that I had received back in the fall/winter), they contain virtually no myeloma - just some trace below 0.38 and my bone marrow was down to less than 1%. That is the goal - starting from a point of remission. Since the melphalan wiped out any other myeloma in my bone marrow and blood, I will be starting from a very good point.
I will keep you posted on my experience throughout this process! Thank you for your well-wishes, prayers, and general good JU JU! I am staying positive and looking forward to a wonderful remission!
Re: Debbie's Stem Cell Transplant Journey
Thank you for the update, Debbie, and good luck with the procedure.
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JPC - Name: JPC
Re: Debbie's Stem Cell Transplant Journey
Hi Debbie,
Thank you so much for sharing your ASCT journey with us! I am a few weeks behind you in the process (melphalan scheduled for April 12), but I will be watching for your updates so that I know what is coming ... from a patient's perspective.
I hope the process is gentle for you and that you have an uneventful recovery and long, long, long remission.
All the best,
Karen
Thank you so much for sharing your ASCT journey with us! I am a few weeks behind you in the process (melphalan scheduled for April 12), but I will be watching for your updates so that I know what is coming ... from a patient's perspective.
I hope the process is gentle for you and that you have an uneventful recovery and long, long, long remission.
All the best,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
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