How I was diagnosed with Multiple Myeloma: Multiple Myeloma Symptoms & Treatments | Cancer Journey

hi my name is Chrissy and today I'm going to talk to you about how I was diagnosed with multiple myeloma in this video I'm going to go over what my symptoms were how I came about getting the initial diagnosis and my journey through the first few years of being diagnosed with this condition multiple myeloma is a blood cancer and I sometimes think of it as the cousin to Leukemia and Lymphoma because they're all grouped together as blood cancers I was diagnosed with multiple myeloma in October of 2020. now when we talk about my symptoms my symptoms actually started in October 2019 one year before in October 2019 I woke up one morning and I was in excruciating pain in my hip and I remember I couldn't put any weight on my leg like I just I couldn't put any weight on it it was extreme bone pain it was really sharp and I had that pain for about a week so I remember I was going on Amazon trying to buy little things to help me kind of get mobile around the house I just basically couldn't stand on my own two feet so I called my doctor and I went in to see my primary care physician well they advised that I get an MRI so I got the MRI and some additional blood work and when the MRI results came back they saw a spot on the top of my femur so at the time my primary care doctor felt that it was it was something called transient osteoporosis so they advised me that we would get monthly checkups monthly MRIs to just monitor it and that in about six to nine months it would go away so they ruled out anything nefarious and they didn't feel like there was anything else going on so of course I continued to get my monthly MRIS up until about February uh end of February beginning of March 2020. that's when the pain came back and this time it wasn't as intense as the first time but it was enough for me to call the doctor and say hey something is going on so when I called my doctor back and told her about the pain she told me to see a bone doctor but because the pandemic had just started it was really hard for me to get in and get an appointment so my primary care doctor decided that I should also see a rheumatologist and for some reason it was easier for me to get in to see the rheumatologist so I went and followed up when I went to the rheumatologist they ran all the tests and everything came back clear so we kind of were scratching our head about what the possible cause could be or if there was any other root cause to the bone pain so about July of 2020 as if I wasn't already going through enough with wondering about my health I actually started to go through a divorce and that was an incredibly stressful time a very intense time and it just so happened after all of that started up I had my next MRI appointment and when I went to that follow-up appointment the spot on my femur chain shape and it got a little bit bigger and when that happened it really made my rheumatologist you know raise her eyebrows so the next time I went to my appointment she recommended that I go see an oncologist so I did go see an oncologist medical facility that I was going to the oncologist was like right down the hall so I was able to get in immediately and see them when I went to the oncologist they looked at my Imaging and they felt like there wasn't anything wrong it wasn't cancer didn't look like cancer so she sent me back to the rheumatologist when I went back to the rheumatologist she was adamant and persistent that I did a biopsy done of my femur and I was against it at first because I was like I just came from the oncologist they don't feel like there's anything wrong and you know there's nothing to see here so I don't want to get a biopsy done because that just felt like it was so invasive and I you know and I honestly I was scared but throughout that appointment it took her about 45 minutes to probably close to an hour she sat with me and persuaded me to get the biopsy done so I went ahead and got the initial biopsy done so when I went to get the biopsy it was like a few weeks after that so it was around September of 2020 and I got my results back the beginning of October 2020 and I'll never forget the day that I got the results back because it's literally the day that changed my life and I remember waking up I felt like I was this was going to be my last time having to go back and forth to the doctors and that everything was going to be resolved and I could get back to normal and not have to do do all these follow-up appointments so when I went into the doctors I remember it took them a long time to come into the appointment and when the rheumatologist came in she brought in another doctor with her I didn't think anything of it I just figured she was you know maybe shadowing her or something like that so she logged into the computer and she looked at me and she said the results of the biopsy state that that spot on your femur is a plasma cytoma and I had no idea what a plasma cytoma was I had never heard the word before but I did know that anytime you have a word that has Oma on the end that it usually means cancer so I broke down I was distraught I mean all of the emotions I was feeling everything was spinning around in my head I I just I felt gutted because I I wasn't sure what it was I just had a general idea that it was cancer and it was definitely not the news I was expecting to hear so it just so happened that they because I was so distraught they had me call someone and my really great sister friend came to pick me up because I just was so destroyed and they told me that the next steps were that I would go see a hematologist so October 20th of 2020 is when I went to see the hematologist and he ordered a lot of different tests he ordered a bone marrow biopsy which is not fun do not recommend okay zero out of five um a pet scan and additional blood work to just kind of basically to begin the staging process to see where I was and of course when I found out about the plasma cytoma I went on Google and I googled every possible thing I possibly could and that's when I found out about multiple myeloma and I realized that this was connected to that and I wasn't sure what stage things would be but I was hoping that it was just one solitary plasma cytoma and that would be you know I could get some radiation and then move on so when I got my results back it was November 25th 2020 was the day before Thanksgiving of that year and I went to my appointment my sister had flown out to be with me because she was just an amazing support to me at that time and I recommend if you're going through anything like this you need a support system so I went to that appointment and he told me unfortunately I didn't have just one plasma cytoma I had three plasma cytomas I have one at the top of my femur I had a large one at the bottom of my femur and I had one in my right jaw and he also said that the pet scan showed cancerous activity in other areas of my bone including my ribs sternum shoulders and both of my femurs so it was not it was not what I wanted to hear I felt like I was gutted yet again and I was just I just felt overwhelmed I wasn't sure what was going to happen it's November the 25th the diagnosis is um high risk multiple myeloma stage one so many things going through my head I knew that because it was so extensive that I would be starting chemotherapy and I also knew from my research that I needed to find a multiple myeloma specialist because statistically it said that you do better you have better outcomes if you see a multiple myeloma specialist so I requested to see a specialist and I was transferred to a specialist so I started chemotherapy December 30th or the 31st of 2020 that was my first day and they told me that I would be on a four drug regimen because when they did my bone marrow biopsy they saw certain factors in the myeloma that made me high risk so they wanted to aggressively treat so they started me on deratumab revlimid velcade indexamethasone which is usually standard treatment except the derotubamab was something that they added to to the standard treatment so I was on that for four Cycles or four months and it brought my numbers down slightly but I plateaued and so my doctor felt at that time I should change my regimen so they added a drug called kepperless so I was on Dera tubemab revlimid hiprilis indexamethasone at that time so I stayed on that treatment for almost a year and it did have a side effect of stress on my heart and that is one of the side effects that you commonly see with the drug called kepperless so um I stayed on it for a year and it did bring my numbers down even more but it did not put me in remission so at that time I had plateaued again and I was stable but my numbers weren't moving so I had actually found out about a clinical trial in the summer of 2022. so June 2022 I approached my specialist and I asked him if I could participate in his clinical trial because the clinical trial basically did another bone marrow biopsy but they took the biopsy sample and they tested that sample against 160 170 different chemotherapies to see which chemotherapy was most effective for your particular type of myeloma so I was very interested in getting that data because of course I had not been in remission from the prior treatments and I wanted to see which drugs would be the most effective so we did that clinical trial and I got the results back the results surprised me because there were some medicines that were deemed effective and there were quite a few that were not before the clinical trial information my specialist wanted me to get a stem cell transplant because a stem cell transplant is standard care for myeloma patient and I had harvested my stem cells a year before just in case I was going to get the transplant but one of the drugs that they use in a transplant called methylene actually came back in the data from the clinical trial but it was not effective for the type of myeloma I was dealing with so my specialist decided that the stem cell transplant was not the way to go and that I should get car T Cell Therapy and I had done a lot of research about car T Cell Therapy I was on board with getting that treatment so we started the process for car T Cell Therapy in October of 2022 and for those that don't know what car T cell is it's it stands for chimeric antigen receptor therapy and basically they take your T cells they extract your T cells they send them to a lab the lab attaches certain antigens to the cells to attack the cancer cell and then they reintroduce those cells back to your into your system the whole process usually takes about eight weeks to manufacture the cells so you do have to wait for yourselves to come back so I had the process started in October and I'll probably do another video on the car T Cell Journey but um they started the process in October and I got my sales back at the end of December and they gave me my cells January 11th of 2023. so at that time you know I was impatient in the hospital for about 14 days uh while they monitor you after they give you the cells and I knew within about two or three weeks of getting the sales back that the treatment was effective and they didn't see any cancer or cells in my bone marrow biopsy that they did as a follow-up so it was a successful treatment I was very happy to get that news but they do know for multiple myeloma patients that cartoon cell therapy is not Curative statistically they know that you'll relapse at some point they just don't know when you'll relapse so you have to go every month to see your medical team to get blood work done and to just kind of see where things are whether you're still in remission or not so for the last seven or eight months I've had to go monthly to get that blood work done and there's a term in the cancer Community called Skin anxiety and it's the anxiety that you feel whenever you have to get a scan a pet scan a biopsy blood work and I have to tell you it is real because every month I'm always nervous about getting my results back and it's it's nerve-wracking to be quite honest with you but I am happy to be in remission right now and I pray for a deep and long endurable remission that has been my journey so far with being diagnosed with multiple myeloma thank you for watching this video don't forget to like comment or subscribe to my channel I'll be doing more multiple myeloma content in future videos so thank you and I'll see you in another video

Channel: Krissythewhimsy

Views: 5,470

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Id: N58Uh65dLoA

Length: 15min 50sec (950 seconds)

Published: Sat Sep 02 2023