My Myeloma Update

Not sure where to start. I knew I had to come back at some point to continue my story.

March 2016

I was rushed into the ER in WP for Sepsis, pneumonia and the flu. I was put in an induced coma, intabated and tied down in ICU.  Frank flew back to be with me and the boys because as it stood my life didn’t look very good. Once Frank got there the one thing I won’t forget is telling the nurse please tell Frank when he gets here that I’m not going to die. I survived. After a month in ICU I was released to go to rehab at Burke for a couple of weeks to be able to walk again and breathe again.

My appointment with my main Weill Cornell Oncologist, Dr. Pearse, was a hard one. He told me if I didn’t have this donor transplant I wouldn’t last a year. This was the first time it hit me the hardest. I was on board and soon a donor was found in Germany. I later received an anonymous card from her 6 months later.

It has been a slow start to my recovery from the transplant. Many visits with pneumonia and c-diff. I finally get good news from my transplant Dr. My blood is pumping out 100% cancer free blood. So essentially I’m in remission right?

No…I haven’t said this to too many people yet but from my most recent pet scan my old Myeloma is growing fast. Dr. Pearse said it doesn’t look good. They are starting me on something called Empliciti. It puts a red flag on the Myeloma cells for the antibodies to destroy them. https://www.empliciti.com

After that visit and because I’m starting to feel good I’m not really worried about this fight. That’s how I walked out of the office.  I know God has His time but in the mean time I am enjoying every bit of my life I have left.

Still smiling!

Rachelle

 

 

Something in the Air

The sun is shining bright today, the air was even better. A few weeks ago I was finally able to leave the hospital after being there for a month.

1) First visit was for my out patient surgery for my arm. A metal rod and cadaver bones were placed in my left humurous to help the broken arm. Turned out to be a week stay.

 It is not guaranteed but it was the best quick option. I feel better with it already. No severe pain any longer but limited movement still which I exercise with therapy.

2)  Came home to enjoy a normal life. After a week I had a slight seizure, not a grand mal but enough to send me back to the hospital. Saw a neurologist after a scan and he explained that my tumor removal 5 yrs ago was in an “excitable spot” with a bit remaining on the optic nerve. Any changes in this area could cause seizures. I also had pneumonia once again. Another week at Trinity Medical. I was so ready to return home again and get myself back to normal so I did. Then…..

3) One week later I woke up with a broken sternum. No accident, no physical labor, no bump it simply broke in my sleep. This time I was a little nervous I thought my lungs were punctured. I asked to call the ambulance. Turned out to be double pneumonia this time with 2 more weeks at Trinity. My sternum was fractured so you can imagine having pneumonia at the same time. The surgery on my arm was no big deal now. The upside to this visit I s by this time I had connections in the hospital. I received extra special attention with such wonderful 5 star nurses, visits, flowers from staff, anything from the chef I was craving not kidding and he even delivered. 

 

I can say nothing bad about my stay. But it was still one of the hardest visits I’ve had at hospitals (and there’s been many). On the positive side too Frank was able to leave work and take care of the me and the boys at home. He always brings out happy thoughts and great vibes……just what we needed at home. My sisters Julie and Lynette flew down from Michigan to stay with me at the hospital and help. I’m surrounded by love and it makes me feel good when I’m feeling my worst. Thankful for the many visits too from friends & family, messages and prayers that kept me strong. 

So the hard part this time? Seeing it effect others the most. I won’t get into particulars but I gauge my disease on others reactions. I now question myself if I’m not taking my disease as serious as I should. I just want my old self back. It’s something I’m working on. I’ve never really considered a bone problem would be something I would have to worry about. I can’t be active like I love to because I’m at risk. It seems now to be the biggest side effect that I will have to fight the hardest for. I’m finding that more of my bones are becoming very weak with lesions. Best solution is to take advantage of Dr. Mark and his team and the medicine available at Weil Cornell. Im going to need the cutting edge that we hear and read about in the news. Always new trial drugs available to consider. This is including the stem cell hole injections I spoke about in my previous posts that will fill my bones lesions. We are returning to NY in June after my children finish school.

Wow this is some revelation on my part but I know some of you may have been curious to my continuous story. For the most things are generally boring to reveal on my blog so I tend to spare the details of my numbers and my maintenance treatments. This time reality really hit me so now I wish to share. Decided to take a break from Facebook for awhile. Will continue updates on my blog. In the mean time I will be working on myself physically, spiritually and emotionally, keeping a happy life. I started with my short hair cut. 

  and look……

I’m still smiling,

Rachelle Amira

My Updated Surgical Post

I’m finally ready to give you an update as promised on my surgery. I’m sure it will have to be short and sweet as I’m still on the road to recovery.

Entering into this it was believed to be an outpatient surgery but I kind of knew better. One week stay at the hospital was the result.

 Excited at the thought of fixing this pain I had to endure on a daily basis since early December. I was ready. Surgery finished but as soon as I woke from my anesthesia I was in the worst pain I think I’ve ever experienced. I cried for 24 hrs straight. Thank God my sisters were here for support. The doctors had to find the right cocktail of medicine to make the pain durable. I found out that an iron rod was securely put in place to secure the bone but a bone graft was completed first before that was done. Some of you may not know what one is but it was stuffing the holes with freeze dried cadaver bones to help as well. This part wasn’t completely discussed with me. But I didn’t have much of a choice whether it would be my hip bone or the cadaver. 

My next step is to venture into the stem cell injections for the rest of my holes into my bones, extremities and pelvic area to avoid this again. Will be meeting again with my orthopedic doc again to explore this further.

I’ve started physical therapy very slowly I can feel a difference already. Thanks to Melanie Blade for that Bionic Woman label as I use that freely with my boys. Can’t play basketball yet but I’ll be there. In the mean time I’m working on my our new book characters with Craig Mattison (my favorite author). I’ll be back and I promise you I’ll be…..

Still smiling,

Rachelle Amira

3 Year Anniversary

Marking my 3 year anniversary for my stem cell transplant on Valentines Day at Weil Cornell in NYC. Yup that’s where I lost my hair as well as those cancer cells. Now the cells are back and I’m still trying to grow my hair to what it used to look like….not easy but I promised Mikey. Even though I was in remission for only 6 months I don’t regret trying the transplant out. 20 yrs ago not a chance to try a transplant with stem cells, so I feel lucky I had the opportunity.
Now I read about a new trial….Killing aggressive cancer cells with reprogrammed HIV cells. The safe HIV cells devour the cancer cells in the bone marrow. With only 1 yr left to survive, this young father from Utah who had Leukemia decided to take on this trial. What does he have to lose, right? I certainly would. Well he’s been in remission ever since. Amen to that! If I could try this I would. I will have to remember to ask Dr. Mark about that trial on my next visit.

At the risk of sounding like I complain too much I have to say my poor arm is on it’s last breath and the pain is getting worse. Maybe it’s from the dreams of me bowling or it’s from me trying to catch something when it falls from the counter. I was told last week I’ve been walking around with a broken arm now so with great pleasure I’m announcing that my surgery for the rod placement is scheduled for this Wednesday. Will come back with an update afterward and will keep everyone posted with the news regarding stem cell injections. Talking to my oncologist about this new medicine we need to order from Panama, she tells me that she had never heard of it being used to fill holes that we get from this disease. She said if this works she has many patients who would love to try this for their bone lesions. Funny that opportunity is not known. I know my orthopedist has never used it on a cancer patient. So for that reason I would love to be their guinea pig. Tonight I will be going to sleep with a bigger smile on my face. I feel so much love coming from my friends and family and for that I am incredibly grateful.
⭕️❌⭕️

Always smiling,

Rachelle Amira

Star Patient

Dear Dr. Mark,

My name is Rachelle Amira. I used to be a proud Myeloma patient of yours 2011- 2013, exclaiming that I will be your “star patient” someday and that you’ll be talking about me and how well I survived Myeloma. I had my transplant in 2/2012, but relapsed 6 months later. I’m hoping you’ll remember me.

I relocated to FL, Tampa area, and found a suitable oncologist (Dr. Choksi) who decided no more transplants. We decided to just maintain the disease with chemo. So far so good with my blood status.
I am asking you for your opinion on a treatment that I feel I am in desperate need of.
I’ve developed multiple lesions in my arm bone to the point where I can no longer move it without severe pain. I saw an orthopedist, Dr. Candelora, and he suggested a rod put in as it’s an intended break. The big question I have is he also suggests Mesenchymal stem cell injections for the therapeutic effects it has on the holes in the bone.

Please give me your opinion on this treatment. I trust and feel confidant with your knowledge more so than anyone else.
Dr. Peter Candelora has asked me to pass his number to you so he could speak with you about this. 727-848-1417.

I will be returning to NY this summer and intend on continuing my status as your star patient. 😊
Thank you in advance for any help you can offer me.

Rachelle Amira

(Received 15 minutes later)

Hi Rachelle,
It’s great to hear from you. I still think about you and wonder how you’re doing. I spoke to Dr. Candelora and I feel that he can proceed with the rod placement, and even use the mesenchymal stem cells if necessary. Those stem cells are different than the transplanted cells that we had used before for the myeloma treatment. Proceed with confidence. I look forward to seeing you again this summer where we can catch up. Good luck with everything!

Thanks,

Tomer.

I cried with pure joy that this busy Dr. Mark in 15 minutes had the time to call my orthopedist and write me back when I was crossing my fingers hoping to get a reply.
For the record I have been doing really good with my maintenance treatment. My blood numbers are great! A big infusion of potassium here and there as well as Zometa once a month for the severe bone problems I’ve incurred. I do a light chemo twice per week. My myeloma side effects have turned out mild really since I’ve lived in Florida. Mild meaning no hospitalization with pneumonia like I did in the beginning. I do have a severe bone lesion problem thank God in my left arm and not my right. My arm is very weak and in pain and with my squeals, I’ve developed some very helpful boys to say the least. Bottom line is that I have a great family that looks out for me. I will be scheduling surgery for the rod placement and will speak further with the ortho regarding the stem cell injections. What he has told me is that I will have to order it from Panama which is approved by the FDA but not covered by insurance. I asked how much and he told me looks like it will be a fund raiser event.

Still smiling,

Rachelle Amira

Peace, Love and Happiness

I feel great!…..and my numbers are oddly normal. Could it be my new oral chemo medicine? Could it be the Florida weather? Could it be the prayers God is receiving on my behalf? Could it be that my body is just not giving this cancer any validity? Positive outlook? Well I honestly believe it’s everything but the one thing I am now doing differently is that I’ve been painting full time, and I’ve always said painting is my medicine.
As I’m sitting here writing this in my chemo chair I was just handed my new blood test results. Platelets last week 202….this week 400! My doctor is shocked.
I have been indulging into more leafy greens and just eating better too so perhaps that is another reason my numbers are good and I’m feeling great! Plan for me is to make changes physically to my body. I want to wear my bikinis again these damn steroids have done some reversible damage I intend on fixing. I also want to put my long hair back into a pony tail. I hardly recognize myself anymore when I see pictures or look into the mirror. More exercise and healthier eating here I come.

I decided to get the port for my chest to make life easier for the nurses and myself. It’s lays under the skin. Last time it was a tube hanging. Didn’t want that in FL but now it’s not a problem. We are running out of poking room in my arm so I don’t really have a choice. That’s a Monday plan.
One last thought to many of you who know my daughter Alexis. She will be graduating from UMASS in 10 days then onto a new job and apartment in Boston that alone makes me feel the Peace, Love and Happiness.

Still smiling,
Rachelle

Happy Valentines & Happy Anniversary

Happy Valentine’s Day. One of my favorite days of the year. The day spread thick with love….and after all that’s all we need is love right? My younger son Mikey keeps calling today Thanksgiving Day all week he’s been saying it. So I decided to leave it alone instead of correcting him every time. We should be thankful anyways for the love that we have in our lives. I know I couldn’t be more thankful for the outpouring of love in my direction between my family and friends. I feel so spoiled sometimes but I’ve learned to accept it and hold on to it.

Happy Anniversary….

It’s been 2 years since my Bone Marrow Transplant at Weil Cornell in NYC. February 14, 2012. Valentine’s Day…imagine that. My hair fell out, started to anyway so I had it buzzed…..big moment of the day…..that big love day. Still trying to grow that long red hair back for Mikey. I’ll get it there. However, the biggest change from then till now is that it’s a bigger “love day” for me…..and I can honestly say I’m more of a relaxed person when it comes to my disease too. I don’t give it too much thought during the day. I deal with my side effects of being tired or nauseous or with pain as par for the course. Haven’t had any problems with anemia, pneumonia or kidneys as expected but knock on wood those downfalls have kept their distance.

Not trying to put a negative spin on this but I’m thinking about their conversation with me about my new life expectancy of 3 years, down from 10 due to DNA test results after my transplant. I’m at 2 yrs now and I still feel like the luckiest girl in the world! This week Tom Brokaw came out with his diagnosis of multiple myeloma and said he feels like the “luckiest guy” in the world. As I read those words I couldn’t help but think about how I said the same damn thing when I was diagnosed. I felt a little odd saying that to my loved ones too but it was an honest feeling. Why do we feel so lucky? All I can say is to be told that you have a limited amount of time on this earth with the people you love so much it puts living in that perspective that you need to have to enjoy every single moment of your life immensely. And I will….

Just stepped out of the oncologist’s office and it was a good visit. All my lab work looks good so I won’t bore you with those details. The doctor has decided to start me on a trial drug (oral chemo) to get this cancer # down to their lowest.
Not excited about taking more meds but I’ll try it. Always open to new trial treatments as I’ve done them before with a great outcome right before my transplant. As far as another bone marrow transplant my oncologist is in no hurry. I think I know why…the last remission from my last transplant only lasted 6 months. I think she is taking the conservative approach to treating me and it’s ok with me.

So today….Happy Valentine’s Day and happy anniversary to me.

Still smilin,
Rachelle Amira

Everyone Likes A Good Challenge

Yesterday was my long awaited visit to Moffitt Cancer Center. Altogether the day was a great!

I met with Rachid Baz, MD. He’s from and studied in Beirut, Lebanon and trained at the Cleveland Clinic. As a hematologist/oncologist he specialize in Multiple Myeloma or plasma cell cancers.
After my 14 vials of blood were drawn for the lab he walks into the room after reading my application that took me 2 hrs to complete the night before…it was so thorough. So he knew me very well when we shook hands.

First question: “Where did you get the Arabic name Amira from?”
Me: “It came from my ex husband, Greg. His grandfather came from Turkey and Yes, I am divorced as of 19 yrs ago.
Dr: “But you decided to keep the name? You do know Amira means princess; prosperous?”
Me: “Exactly!….it was either Amira or Longnecker again….and well ya know it was not hard to choose.”

That was a nice way to start a good rapport with a great doctor. My consultation with him was impressive!

As it stands…..the new chemo treatments I am on, Kyprolis, was confirmed as a good plan B. He also reiterated the fact and pointed out in a easy understandable way of how to view my type of Multiple Myeloma. I have 10 abnormal chromosomes in my DNA which is new. This puts my disease at a very difficult position to treat and cure or put into remission. Essentially it will be very hard to fight so as I said before it is the art of finding the right drug combo. With so many available options out there, medically there is always hope.
I am getting pretty good at getting to know MM or the type of MM I have, so I always got ahead of him in the conversation. I asked him about a clinical drug combo that included antibodies and yes they have one now. So that could be another option. The plan is, as he stated, is to get my MM numbers close to a zero and do a donor stem cell transplant, a tough transplant to do but this will and Dr. Baz said it too….”help you to come closest to a cure”. Using someone else’s healthy antibodies and stem cells to create the best bone marrow is what I need. Also being diagnosed at 40 when the avg age is 70 for MM patients….I certainly have that going for me still. I feel really good about this now.

I will continue to do my treatments locally but decided to have Dr. Baz be the captain of this ship. I love that we spoke so clearly and I see that he loves a good challenge. So I told him the same thing I told Dr. Mark from Weill Cornell…”I will be your “star” patient. You’ll see”….. I shook his hand goodbye and felt complete relief.

My lab results showed my hemoglobin extremely low so I must go in for blood transfusions today. But the best part is is that I still don’t feel sick.
I will not let the Dr.’s take all the credit. Most importantly I pray and really believe in my prayers. I still walk around like I’m on top of the world….and I’m loving life and people and moments so much. I give this cancer 0 respect and 0 thought. I continue to ride my bike with my sons, dance like I love to, sing out loud, talk to strangers and pass my good vibe on with peace and serenity.

….and I’m still smiling

Rachelle Amira

The Results

Dear friends,

I am only here because I made a promise to keep you posted on the results. Unfortunately I am not the bearer of good news today.
I went to the doctors office to get my standard blood test and when the nurse informed me the doctor wanted to talk with me I sensed it wasn’t just to say Hi.
I brought my boys who was waiting in the lobby w/the electronics since it was going to be a quick visit. Sitting in the chair waiting for the doctor to walk in I started to cry thinking about my boys waiting on their mother who was about to get some bad news. She walked in and asked why I was crying…I said simply that I have a gut feeling its not good news and she replied that I’m a very smart girl. She then proceeded to tell me the numbers of my biopsy….
My IgG (also known as multiple myeloma cells) was now in the 10,000 range when 2 months ago it was at a 5,000 range. In a nutshell….my bone marrow contains 90% cancer and its moving up quickly. As a realist she explained that its time to get things in order….referring to my sons.

What could I say other than the fact that I don’t feel sick. I also believe that all this transition and missed chemos had plenty to do with it. So the plan to start a new type of chemo called Krypolis sounds good to me but I’m making that appointment at Moffitt Cancer Center today. In the mean time until I’m able to get to that appt. lets do some chemo. I had blood transfusions on Saturday to get my blood ready so they won’t turn me away this time for low platelets and hemoglobin.
Sunday came and I decided to enjoy the day with my boys fully so I took them to Universal in Orlando. They never been, so we went from opening to closing. They said this was the best day they ever had!…and to see their smiles was all I needed for it to be one of my best days ever. I’m broker than broke now but no regrets it was so worth it.
My biggest message today more so than the unsettling news….everyone reading this listen carefully….enjoy life to the fullest! Especially with your children and loved ones. Even to the souls who have the healthiest of lives. You just never know what’s going to happen tomorrow.
I will still fight this stupid cancer with my own personal medicine of positivity and prayers…not forgetting the placebo effect the mind can play on the body too. Hopefully next msg. I can prove my point.

I think I’ll paint today and love on my boys.

Still smiling…
Rachelle

Lucky in Life

I believe I’m long over due with letting you in on a few details about me and my myeloma. My last post was a little over a year ago and I was happily in remission. Unfortunately that lasted 6 months and it was determined by my doctor that my maintenance drug, Revlimid, was not effective. Yes, that could be part of it but I also believe the relapse had to do with the madness that one is sometimes surrounded with unknowingly. It can wake the cancer. I will elaborate in a bit.

I started right away a new treatment of light chemo twice a week at Weill Cornell, NYC. Now a year later with 3 trips to the hospital, two for pneumonia and one for severe anemia, I’m still doing the light chemo with no positive change in my blood. The survival of multiple myeloma’s claim to fame is the art of finding medicine that works for that certain person. So many different options. So maybe it’s time to change it up a bit? I didn’t voice my opinion about the negative effects of my stressed environment on my cancer. I was now focused on changing my lifestyle myself so I can benefit from its positive effects.
So Doctor Mark…I’ll trust your decision on the medicinal part but I’m going to work on this end by creating a zen life that will put this cancer back to sleep.

During the year into relapse I decided to change my life in many different ways…..I picked up the paint brush and started painting more. It was a perfect start, after all I’ve always considered painting as a medicine as it puts me in a meditative state of mind. I changed my eating habits with the expert guidance of my good friend Jennifer Hirsch. She taught me everything I needed to know about the influence of food on the body….especially the benefits of certain food for my struggle with cancer. Next I became closer with my God. I was stuck on Mark 11:24….Therefore I tell you, whatever you ask in prayer, believe you have received it, and it will be yours…..I truly think one can always pray for miracles but “believing” is the most important part. l also thought its time to fix that part of my life that brought so much “madness” into it. Yes there were some big bumps in the road and some hurdles that I had to jump but I got to the place in my life I could only dream of before.
I now live in Florida with my Frankie and Mikey. I live closer to my family. I feel like I’m back home. I had to locate a new oncologist to continue my treatment right away. But it’s not the team of doctors I am used to so I plan on visiting Moffitt Cancer Center in Tampa soon. In the mean time I’m due for a bone marrow biopsy today to confirm that my Multiple Myeloma numbers are up.
Whatever the results will be I will still walk the walk of positive thoughts and believe in my prayers and enjoy the peaceful nature of my new environment. I will also continue to feel like I’m no longer sick and keep the stress free life. I will enjoy every opportunity of fun that comes my way.

I’m next up for the biopsy so wish me luck. I promise to keep you posted on the results and if they decide to change up the medicine.

Still smiling,
Rachelle