For those following my journey with this Lymphoma, I want to say that finally, after almost 3 years, I am finally "cured". Cured in a sense that there are no traces of the disease with my last PET scan.
Since this blog has not been updated since I left Cancer Treatment Centers of America, I'll give you a quick synopsis.
In 2012, I was supposed to have 6 treatments of ABVD, then as we moved forward, it jumped to 8 treatments, then we had to do 12. Nowhere we were told we needed to continue due to the disease being aggressive. We took a vacation after a meeting with the oncologist at CTCA and said all is well, we got to ring the bell, only to find out in November that I have an aggressive type of lymphoma and that it came back. Also, worthy of noticing, when I started treatment, we were told a PET scan will be used along the treatment to make sure all is moving along nice, but I was only given contrast CT scans.
When we asked, we were not really given an explanation. Panic mode ensued, as oncologist said I need to get a stem cell transplant, had to fly to Chicago, then back to Phoenix, etc. It would have been a nightmare. Since our new insurance was accepted at Mayo, we requested to go to the them, much to the surprise of the oncologist, who actually came from Mayo and called someone there to recommend us and to get us in the door with his former boss, Dr. Leis.
Night and day difference between Mayo and CTCA. The CTCA experience, though we were treated nice, they had a low retention rate among staff, and the oncologist was always in the room with a new "case manager" that pretty much was making sure the doc wasn't saying what he wasn't supposed to say...what we felt...and I'm sure others may come across the same feeling if they were there.
Mayo took the bull by the horns, and the new oncologist questioned a few decisions previous oncologist without putting blame. We were a bit baffled, but in the end this is what happened at Mayo, simplified in a few steps:
Nov-Dec 2012 had a new type of chemo, disease still present a bit in the big affected areas (chest and spleen). Towards the end of the year, we started prepping for the stem cell transplant option.
Feb 2013, I was admitted to Mayo to begin the process. Sterile room, chemo to destroy immune system to 0, get my own stem cells back and wait to see if it works. If this didn't work, I'd have to live the rest of my life in a sterile room, without immunity, until a viable donor was found. All worked out well, went for a check up...still had residue in spleen area and chest...tiny spots. Had to have radiation. At this point, I began taking B17, a supplement that many swear it has helped them beat various mild form or cancers without the need of chemotherapy. I wasn't going to try that only. Doctors didn't know what I was talking about, they figured it was a supplement, and took it while undergoing radio.
After the entire radiation was finished, I was informed around my birthday in November 2013, that the cancer is not anywhere present anywhere and that I will have another follow up at 1 year after transplant. As of Feb 2014, same results were showing and I hope it stays the same.
I remain on B17, reduced dose and other herbal remedies, including honey mixed with bee bread, propolis tincture and aloe vera. I am not saying this is key, but I do truly believe it helped towards the end, when it kept showing up.
Sorry for not having the time to continue this, but life started for us again and that's a good thing.
Thursday, August 7, 2014
Tuesday, July 10, 2012
Green light for the LAST treatment
Some of you may already know that I was supposed to have my last chemotherapy on this past Wednesday, the 4th of July. Since my oncologist was off that day, we decided to come in the next day on the 5th. Anyways, Sorin and I were exited for this day, being the last treatment, but my doctor put a stop on the treatment because I complained of some slight discomfort when breathing in some mornings.
The main concern for the doctor was to make sure it was not related to chemotherapy complications, as one of the drugs can affect breathing. After a CT scan of my lungs, which was needed due to my pulmonary function test (which I despise) being slightly different from 6 months ago, we now know that is nothing to be worried about. After meeting with the pulmonologist we are more at ease to know that is nothing to be concerned about.
My oncologist gave me the OK for my last treatment which is scheduled for July 10th in the morning. I will be under supervision with the Cancer Treatment Center for at least 5 years. In about 3-4 months from now I will have another CT scan done and lab work, and from there in 6 months again, and then every year.
This type of cancer is curable, so at this point I am in remission, meaning my lymph nodes are back to the normal size and we want to keep it that way. If I pass the 2 years mark of still being in remission, my chances are much higher (percentage wise) for the disease not to come back.
This journey that I had for the past 6 months, I do not wish anyone would ever have to take, but unfortunately things happen in a person's life without any reason nor explication. That really makes you become a stronger person, mentally and spiritually. With that said, I would like take the time again to thank every single one of you for keeping me going forward, with tears in my eyes I write this telling you that I could not have done it without you.
I want to thank my crazy sister in law who has the guts to argue with medical staff when things are not working out as planned. I want to thank Vic and Raluca for coming with me to be bored during the infusion, when Sorin was busy at work. I want to thank Cipi and Marius for running in San Diego for me and for Ioana who I am sure is looking over us and putting good words for us up there.
I will keep everyone posted with updates as I continue to be under the supervision of the Cancer Treatment Centers of America staff, how despite the fact that sometimes things don't work out as planned, they are human and do truly care about people going through a tough experience in their life.
PULMONARY FUNCTION TEST
Saturday, June 23, 2012
Saturday, April 28, 2012
Update after 7th treatment
I am very excited to write this particular post, because of some exceptional good news I received on April 25th. This date was my half way point to complete my 6 cycles, and as discussed with my oncologist when we started, I would be due for a mid treatment CT scan. I have done that on the 24th, and could not wait until the 25th to meet and discuss with the doctor about it.
With that said, we met on the 25th and to say it plainly, the CT scans came back clear. What does that mean? Well, if I were to go to a new oncologist to get diagnosed based on my scans, they would not be able to detect anything.
My oncologist has stated that I have to complete my treatment, even though it is clear and that only scar tissue shows on the scans, something normal.
I will keep everyone posted with more photos, after my 8th treatment.
Overall, I feel very tired a few days after the infusion day, however I gain energy slowly after 4th day on, with occasional crappy days after. The second week after chemo, my energy levels are back to normal.
I have started to see my hair thin out; however, I am hesitant to shave it yet. Oh well, when the need comes, I will shave it off.
I want to thank all of you for thinking of me, praying for me and sending me positive energy. God is Good!
[ROMANESTE]
Sunt foarte bucuroasa sa anunt ca pe data de Aprilie 25 am primit niste vesti foarte bune. Precum stabilit cu doctorul oncolog, dupa 6 tratamente, a trebuit sa fac o tomografie sa revizuim ganglionii limfatici. Tomografia a fost facuta pe 24 aprilie, iar pe 25 doctorul ne-a anuntat ca nu se mai vede nimic pe film. Ce inseamna asta? Daca ar fii sa imi faca un diagnostic acum, nu ar putea fii identificat si ca arata ca la o persoana normala.
Tratamentul trebuie terminat pt celelalte 6 sesiuni, iar pe 25 am si avut a 7a sesiune de infuzie.
Am sa mai pun poze in continuare si dupa tratamentul 8.
Ma simt obosita a doua zi dupa tratament, dar incet incet nivelul de energie imi revine dupa a 4a zi. Sunt cateva zile can ma simt un pic mai obosita, dar in general ma simt ok dupa o saptamanta dupa tratament.
Parul a inceput sa mi se rareasca si mai tare, dar inca nu ma tund zero. Cand va fii nevoie am sa il tund de tot.
Vreau sa multumesc tuturor ca va ganditi la mine, ca va rugati pentru mine si ca imi trimiteti energie pozitiva. Dumnezeu e Bun!
With that said, we met on the 25th and to say it plainly, the CT scans came back clear. What does that mean? Well, if I were to go to a new oncologist to get diagnosed based on my scans, they would not be able to detect anything.
My oncologist has stated that I have to complete my treatment, even though it is clear and that only scar tissue shows on the scans, something normal.
I will keep everyone posted with more photos, after my 8th treatment.
Overall, I feel very tired a few days after the infusion day, however I gain energy slowly after 4th day on, with occasional crappy days after. The second week after chemo, my energy levels are back to normal.
I have started to see my hair thin out; however, I am hesitant to shave it yet. Oh well, when the need comes, I will shave it off.
I want to thank all of you for thinking of me, praying for me and sending me positive energy. God is Good!
[ROMANESTE]
Sunt foarte bucuroasa sa anunt ca pe data de Aprilie 25 am primit niste vesti foarte bune. Precum stabilit cu doctorul oncolog, dupa 6 tratamente, a trebuit sa fac o tomografie sa revizuim ganglionii limfatici. Tomografia a fost facuta pe 24 aprilie, iar pe 25 doctorul ne-a anuntat ca nu se mai vede nimic pe film. Ce inseamna asta? Daca ar fii sa imi faca un diagnostic acum, nu ar putea fii identificat si ca arata ca la o persoana normala.
Tratamentul trebuie terminat pt celelalte 6 sesiuni, iar pe 25 am si avut a 7a sesiune de infuzie.
Am sa mai pun poze in continuare si dupa tratamentul 8.
Ma simt obosita a doua zi dupa tratament, dar incet incet nivelul de energie imi revine dupa a 4a zi. Sunt cateva zile can ma simt un pic mai obosita, dar in general ma simt ok dupa o saptamanta dupa tratament.
Parul a inceput sa mi se rareasca si mai tare, dar inca nu ma tund zero. Cand va fii nevoie am sa il tund de tot.
Vreau sa multumesc tuturor ca va ganditi la mine, ca va rugati pentru mine si ca imi trimiteti energie pozitiva. Dumnezeu e Bun!
Treatment 5, 6 and 7 photos
Treatment 7 - April 25, 2012
Treatment 6 - April 11, 2012
Treatment 5 - March 28th 2012
Tuesday, March 27, 2012
Update pre 5th treatment
Hello everyone, I think is time for an well overdue update :)
Tomorrow is my 5th treatment, so I passed the 1/3 mark taking in consideration that the full regimen consists of 12 treatments, 6 months total. We first thought there are only 8 treatments, but now we know that after the 8 treatments there are other 4 more treatments to complete it.
Overall, I am felling well, and have started to crave foods that I did not want to eat in the past 4 months. Thinks like coffee, eggs, sushi. Still get lack of energy here and there, but not too bad.
After the 3rd treatment, I felt the worst than the previous treatments and I believe is because right before that treatment I found out about a dear friend of ours Ioana Elise Hocioata, who lost her life in a tragic freak accident while hiking in the Grand Canyon. I was emotionally affected and drained by the circumstances along with my husband being away from home on a business trip.
I now truly understand how the psychological well being is important for your overall health of your body, as the Latin proverb goes "Mens sana in corpore sano"( A healthy mind in a healthy body)
I want to honestly tell everyone that even though what I'm going through is hard to imagine from the other side of my viewpoint, it is manageable and no one should feel awkward talking about me, asking about me, directly or indirectly. What I am going through is a real, and not a secret and I am open to answer any questions anyone has. Talking about it makes me feel better too and makes me feel in charge of the situation.
I also want to take this opportunity to thank everyone involved in the fund raiser at our local church, St. John the Baptist. We have been blessed and overwhelmed with the support we received, emotional and financial. We have no words to describe what we feel about this gesture. I was able to paid off last years biopsies and scans which were covered only partially due to the yearly deductible not being met.
After my 4th treatment, I am much better. I have been going weekly to massage therapy and reflexology part of the treatment plan at CTCA. Even though this is not covered by our insurance, CTCA is offering this as a complementary service and I am extremely thankful for it.
I want to thank my sister in law Tina and my cousin Raluca for spending their days off, sitting at CTCA with me for 5 hours during the infusion sessions....my husband doesn't need any thanks...he says it's part of his marriage contract..the fine print:)
I will post pictures later on this week or maybe next week, as I may have to buzz my hair, as it has been stopping to grow and falling profusely. This is something normal, my body is just shutting down cell production of fast growing cells, to focus on more important functions in the body. The hair and nails are fast growing cells that the body recognizes as non-threatening to shut down production. This is the hardest part for me, as I do not want to look like an alien. (no offense to bald people out there). However, I do understand and know why it is happening and that it will grow back after I stop the treatment.
Tomorrow...5th treatment...BRING IT !
Mihaela
Friday, March 9, 2012
Thursday, February 23, 2012
Update after the 2nd treatment
Today is the 8th day after the treatment and I feel pretty good. Don't get me wrong, the first few days the nausea was almost always there, even if I took medication for it, and I usually had to eat often, every 1 to 2 hours, small nutritious meals/snacks. I still don't have an appetite for meat (I don't even want to see it even, is like my body tells me not to eat it), but I do eat fish (salmon) occasionally. My sweet tooth has now calmed down :) and I hardly eat sweets these days. If there is something that I realized this early in the treatment is that I can feel the difference in my body if I eat more nutritious foods. It definitely makes my body feel better and more capable to "resist" the drugs if I eat organic products and not processed foods.
Today were no signs of nausea and I stooped taking the medication for it from day 5. Some slight bone pain I noticed and low energy level around noon yesterday, but I can't complain. Comparing to the previous treatment's side effects, this time around I felt that went better somewhat. Either I knew what to expect this time around, either the shot that was giving 24 hours after the treatment helped with the white blood cells count and therefore helped with some of the symptoms, I don't know exactly.
I also had my first massage a couple of days ago, at the center where I also go for treatment. It was recommended by the naturopathic doctor, telling me that it will be a benefit for me, as well as acupuncture and chiropractic sessions. The session was only 30 min. long and this because there are toxins that are getting eliminated, therefore my body having to deal with the chemotherapy is hard enough so they don't want to "put too much on my plate" so to speak, for the body to work extra in eliminating the toxins. I guess I just have to trust what they are telling me, because I only cared for a good massage:)
I want to thank everyone for their generous donations. I feel fortunate to have so many friends that support me not just spiritually and through thought, but also financially. It definitely makes this journey much easier to deal with.
XOXO
Mihaela
Friday, February 17, 2012
A surprise
We thank everyone participating to this emotionally ridden surprise!!! We also thank them for their generous donation to Mihaela's Hodgkin's Lymphoma fund.
Thursday, February 16, 2012
Treatment #2, done and over/Tratamentul #2, complet
Yesterday Mihaela went to the clinic at 8am and did not leave until 6pm. Long day!! First they got blood drawn to test the white blood cell count level which was at almost normal range, at about 3.8, normal is 3.9-4.00. They found that Calcium is a little low so she needs to work on that, more coconut milk (dairy has lower calcium by volume when processed in our body) and leafy greens, kale, spinach, broccoli, etc but the naturopath dr recommended some Calcium supplements also. The nutritionist was happy to learn that she gained a couple of pounds. The oncologist was pleased to see that the lymphnodes on the neck decreased significantly, where they are barely palpable (feel them) It is somewhat expected after the first treatment, but doctor seemed excited about it. Afterwards she went upstairs to infusion to get the chemo, she settled in a comfy reclining chair with a pretty good view of the dessert. First they gave the pre meds for nausea and ‘antistress’ stuff that makes you loopy and sleepy; when that is over they start with each of the 4 individual ABVD drugs at the time. It takes a total of 5-6 hours for the entire process. On the bright side they bring you food and fluids/smoothies as one pleases as Mihaela tries to eat and hydrate plenty for the body to sustain the ‘poison’! :)
Got more natural supplements to add to the ‘after treatment’ regiment to take along with the anti-nausea medications. The naturopath prescribed Co-enzyme Q10 and glutamine to help protect the body from the chemo drugs.
The doctor decided to go ahead this time with Neulasta, the shot that improves the white blood count. This should be done 24 hrs after treatment, so on Thursday at 6pm she’ll be there ready and square. It’s a shot they usually do in the belly apparently it gets absorbed in the system faster in the adipose (fatty tissue). Not looking forward to the potential side effects of bone and marrow pain/discomfort. I think they prescribed her something for that too. :)
There might be a problem with the chemo meds in the long run, it seems the clinic is keeping things low profile and do not specifically admit to that but they admit there is a national shortage of various drugs, even simpler ones. Considering the needs, as it seems now, at least 8 treatments/doses, potentially 12, we want to make sure they preorder or ensure the meds will be available. They cannot guarantee it but did say they will do all possible, of course. I guess time will tell. Here's a link from the FDA with national drug shortages
Day 1 after chemo seems OK so far. There is some residue from the loopy drugs from yesterday as she told me earlier today and she is somewhat dragging around the house. Hair started to fall but still not significant, no chunks yet. First sign of that, it will be buzzed and Mihaela will try to compete with Cipi on their best looks:)
We all hope she will feel the same, as in well and good, after this treatment as she did after the first one. From what we understood yesterday, she will feel the same throughout the treatment, as sh did after the first one, which is a good sign, because she only had a few days of feeling 'flu-like' symptoms, but nothing major or needing to stay in bed for days.
Thank you once again to your continuous support. Please feel free to share the link to this blog to anyone that might be interested.
Got more natural supplements to add to the ‘after treatment’ regiment to take along with the anti-nausea medications. The naturopath prescribed Co-enzyme Q10 and glutamine to help protect the body from the chemo drugs.
The doctor decided to go ahead this time with Neulasta, the shot that improves the white blood count. This should be done 24 hrs after treatment, so on Thursday at 6pm she’ll be there ready and square. It’s a shot they usually do in the belly apparently it gets absorbed in the system faster in the adipose (fatty tissue). Not looking forward to the potential side effects of bone and marrow pain/discomfort. I think they prescribed her something for that too. :)
There might be a problem with the chemo meds in the long run, it seems the clinic is keeping things low profile and do not specifically admit to that but they admit there is a national shortage of various drugs, even simpler ones. Considering the needs, as it seems now, at least 8 treatments/doses, potentially 12, we want to make sure they preorder or ensure the meds will be available. They cannot guarantee it but did say they will do all possible, of course. I guess time will tell. Here's a link from the FDA with national drug shortages
Day 1 after chemo seems OK so far. There is some residue from the loopy drugs from yesterday as she told me earlier today and she is somewhat dragging around the house. Hair started to fall but still not significant, no chunks yet. First sign of that, it will be buzzed and Mihaela will try to compete with Cipi on their best looks:)
We all hope she will feel the same, as in well and good, after this treatment as she did after the first one. From what we understood yesterday, she will feel the same throughout the treatment, as sh did after the first one, which is a good sign, because she only had a few days of feeling 'flu-like' symptoms, but nothing major or needing to stay in bed for days.
Thank you once again to your continuous support. Please feel free to share the link to this blog to anyone that might be interested.
Tuesday, February 14, 2012
Donations
Many have asked how they can help Mihaela with medical bills or any other potential costs. For everyone's information, we do have insurance; however, if there are any outstanding bills uncovered by the insurance company, we will use the funds to cover such expenses, and if for any reason whatsoever there is money left over in the fund, it will be donated to the Leukemia & Lymphoma Society, a non profit organization dedicated to individuals with conditions like Mihaela's, or any related ones.
We thank you for thinking of not just spiritually, but also financially, which is a reality when dealing with such life challenges.
[RO] Mulți au intrebat cum pot să ajute financiar pe Mihaela, fie cu restanțe la asigurari sau spital, sau alte cheltuieli potentiale in timpul tratamentului. Vrem să imformăm pe toata lumea ca momentan noi avem asigurare dar in orice eventualitate, dacă vom avea restanțe, o să folosim bani stranși in acoperirea acestor cheltuieli. In cazul in care va rămane orice suma in acest fond, balanța va fii donată la Leukemia & Lymphoma Society, o societate non profit, dedicate persoanelor cu condiția Mihaelei, si altor condiții.
We thank you for thinking of not just spiritually, but also financially, which is a reality when dealing with such life challenges.
[RO] Mulți au intrebat cum pot să ajute financiar pe Mihaela, fie cu restanțe la asigurari sau spital, sau alte cheltuieli potentiale in timpul tratamentului. Vrem să imformăm pe toata lumea ca momentan noi avem asigurare dar in orice eventualitate, dacă vom avea restanțe, o să folosim bani stranși in acoperirea acestor cheltuieli. In cazul in care va rămane orice suma in acest fond, balanța va fii donată la Leukemia & Lymphoma Society, o societate non profit, dedicate persoanelor cu condiția Mihaelei, si altor condiții.
Mulțumim tuturor care vor să participe la acest fond. Dacă aveți intrebări, vă rugăm să comențati pe blog, să ne contactați sau să ne sunați.
My Story
Officially diagnosed on January 3, 2012 with Classical Hodgkin's Lymphoma, lymphocytic rich type, Stage 3A (A means no symptoms). Found an enlarged lymph node on the right side of the neck, above the clavicle around February 2011 with no other symptoms. I postponed to have it checked thinking I was busy with school and family, not thinking is something serious although I was worried about it. After graduation (dental hygiene school) towards the end of November 2011, I finally had it checked. I got my first CT scan along with the blood work, and I was referred to an oncologist who gave me the dreading news, he was 90% positive it is Hodgkin's Lymphoma. From there more tests were necessary PET scan and biopsies to get to an exact diagnosis. I decided to get a second opinion with CTCA, where I also opted to get treatment. Right now I am on chemotherapy treatment. I am on ABVD (Adriamycin, Bleomycin, Vinblastine, Dacarbazine – the names of the 4 drugs) for 8 cycles, 1 cycle every 2 weeks, so 4 months, for now. As I mention I get treatment at CTCA (Cancer Treatment Centers of America) in Goodyear AZ where the oncologist, Dr. Kempka, works with a Naturopath Dr. Birdsall and a nutritionist Danielle Bach. They value treating the disease, but also the person making sure to prevent as much as possible any side effects from the treatment, and maintaining a healthy body during the treatment process.
[RO] Am fost diagnosticata oficial in 3 Ianuarie 2012 cu Clasic Hodgkin’s lymphoma, Stagiul 3A (A inseamna fara simptome). Am descoporit un ganglion umflat in partea dreapta a gatului, deasupra claviculei prin Februarie 2011 fara nici un fel de simptoma. Am amanat sa ma duc la doctor fiind foarte ocupata cu scoala si problemele de zi cu zi, gandindu-ma ca nu e ceva serios, dar ma macina gandul ca ceva nu e in ordine. Dupa graduare (igiena dentara) spre sfarsitul lunii Noiembrie 2011 m-am dus la doctor. Mi-au facut un CT scan si teste la sange si apoi am fost trimisa la un oncolog, care mi-a dat vestea ca 90% sigur este Hodgkin’s Lymphoma (un tip de cancer la ganglioni). De acolo au pornit un sir de alte teste necesare, PET scan si biopsii pentru a afla diagnosticul exact. Acum sunt in tratement cu citostatice numit ABVD (Adriamycin, Bleomycin, Vinblastine, Dacarbazine – numele celor 4 medicamente) pentru 8 cicluri, 1 ciclu la 2 saptamani, deci pentru 4 luni, deocamdata. Sunt in tratament la CTCA un centru de tratament de cancer din S.U.A., acesta aflandu-se in Goodyear, Arizona unde oncologul Dr. Kempka lucreaza cot la cot cu un doctor naturist Dr. Birdsall si nutritionista Danielle Bach. Ei pun valoare in tratarea bolii, dar si a persoanei si fac tot posibilul sa previna cat mai multe din efectele secundare ale tratamentului, si sa mentina corpul cat mai sanatos pe durata tratamentului.
Subscribe to:
Posts (Atom)