I’ve been a bit out of sorts lately because we found out a month ago that my dad has cancer. He’d gone to Urgent Care because he had trouble swallowing. His voice sounded funny, too. Urgent Care sent him to an ENT straight away. That doctor told him later that he presented like someone with throat cancer, but when he’d looked down his throat, it looked like he had a smooth cyst, so he didn’t mention cancer. He just got him scheduled for surgery to remove the cyst.
When he went in for surgery the next week, what was supposed to be a 20-minute procedure took about an hour and a half because they were having difficulty getting the tube down his throat because the mass was so big. It wasn’t smooth like the doctor had originally thought; it was spongy. So when the doctor came out to talk to my mom, he told her quite certainly that it was cancer.
The doctor removed the 3x2x1 cm tumor and sent it out for biopsy. At his follow-up appointment, we learned that he had non-Hodgkin’s lymphoma, but anything more specific required more testing. An appointment was made with an oncologist at New York Oncology Hematology (NYOH).
My dad had a whole battery of blood work and other tests run, including a CT scan and a PET scan. He was typed as having Mantle Cell Lymphoma, a rare form of cancer that accounts for 6% of all lymphoma patients, with only 3,000 cases diagnosed in the United States each year. For comparison’s sake, there are only 2,000 new cases of mesothelioma diagnosed in the U.S. each year, and that is an extremely rare form of cancer that most people only know about because lawyers are always looking for patients to represent.
For a week or so, we thought he might be Stage 1. The oncologist was baffled not to find the lymphoma jumping out at him in some of the scans that came back. There were a couple of enlarged nodes that might be cancer, but the areas are too hard to biopsy.
This week, he had an endoscopy and colonoscopy. The gastroenterologist – a young blonde woman who he nearly called Barbie in his Demerol stupor – removed some polyps from both his stomach and his colon, but as he’d never had this done before, it’s possible they’re just benign. We’re still waiting for the biopsy results on that.
He had another appointment with his oncologist this morning. The good news was that there was no cancer found in his bone marrow. The bad news was that further review of his PET scan indicated that those nodes in his abdomen likely are cancer, and that puts him at Stage 3 cancer. If the biopsied polyps come back as lymphoma, that will put him at Stage 4. Mantle Cell Lymphoma is staged based on finding the cancer on both sides of the diaphragm.
That news was hard to swallow. My mom had a scare when she accompanied him to the bathroom after his appointment. She said that all color drained from his skin, his eyes took on a vacant expression, and he started falling toward the wall. She tried slapping his face, the way they do on TV, but he did not respond. She shouted for help, and medical personnel started running. My dad has no recollection of any of this. It may have been an episode of vasovagal syncope, something I’ve actually experienced previously. He’s been very strong and very positive all along. I don’t think anyone was expecting him to go from Stage 1 to Stage 3 at this point.
This afternoon, my parents are attending a chemo class. They’re going to be learning all about the R-CHOP regimen he’ll be starting on Monday. R-CHOP is a combination chemotherapy treatment (Rituximab, Cyclophosphamide, Hydroxydaunomycin, Oncovin, Prednisone) that seems to be the simple standard for Mantle Cell Lymphoma. The oncologist decided against the aggressive treatment he’d initially recommended because it would require a week in the hospital each time, and based on my dad’s age and health, this seemed the better way to go. The aggressive treatment would likely make it impossible for him to have the bone marrow transplant later on that could cure his cancer. Mantle Cell Lymphoma almost always comes back, but a bone marrow transplant could stop that from happening. We’re holding onto hope that he can have that done after a successful round of chemo.
The problem with R-CHOP right now is that there is a national shortage of one of the five drugs – vincristine sulfate (Oncovin). When he starts chemo on Monday, he will not be receiving this drug due to lack of availability. I really hate to think that he’ll be unable to have all of what his oncologist seems to think is the best course of treatment for him. And it’s not just his doctor’s opinion – the oncologist was also consulting with his colleagues at Sloan-Kettering and Dana Farber.
I’m hoping the drug becomes available soon. This cancer needs to be knocked out. It’s a very aggressive cancer; the tumor has already grown back after his surgery, enough that he’s having trouble swallowing again and his voice sounds more nasal than it should. In just a matter of weeks. I’m told that more aggressive forms of cancer are more responsive to chemotherapy, so I’m hoping that holds true.
If you pray, please keep my dad and our family in your thoughts. If you don’t pray, if you could send some positive thoughts in our general direction, that would be appreciated. He’s already on prayer chains around the world, and I’d like to keep it going.
If you’re so inclined, especially with the end of the year coming up, when most of us are trying to sort out our charitable contributions, please consider making a donation to the Lymphoma Research Foundation (LRF).Your donations are tax-deductible, as the organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code.
My dad is still fairly young, which gives him a better chance at fighting this cancer. I’ve already had moments of despair, but I’m not giving up hope that he’s going to beat this. I’ll keep you posted.
November 15, 2010 Update: My dad completed his first chemotherapy treatment. Seven and a half hours, but he did great.
November 19, 2012 Update: My dad has been in remission for over a year now. He has what’s called indolent lymphoma in his colon, but it isn’t currently doing him any harm. He had a PET scan earlier this month to prove it. He has always been very positive, and he believes that the prayers of so many helped him to beat this thing. I am truly grateful for all of the support we’ve had.
Linda Carmical says
I’m so sorry Christina, Your dad, your mom, you and your family are in my prayers. I pray your dad will endure as little pain through this as possible; and when he looks back he sees this all as just another one of life’s hiccups. Hopefully one day he’ll scoff at this cancer as nothing more than a little fleck in his life and not even worth mentioning. 🙂
I was diagnosed with Stage4+ MCL myself in July 2008. I did CHOP-R Chemotherapy and autologous stem cell transplant. The former was much easier than the latter.
But it’s been a 18 months since my ‘rebirth’ and I’m still in full remission. I was able to celebrate my 40th birthday this year.
All this to say that there’s hope. It’s a rough road, no doubt.
Beth @ TheAngelForever says
Christina, please know that our thoughts and prayers are with your entire family. The word cancer sends shivers down my spine since it has hit my family too often. Know that we are here for you if you ever need anything. Watching you these last few weeks has shown what a dedicated individual you are. Even when faced with this news, you kept on top of other commitments. Hugs coming your way and all of the strength in the world to your father as he gets ready to beat this beast.
Ruud Hein says
I — we — are following your story. There’s going to be a place to say hi, a time to just kick back and have fun, and a team of shoulders to lean on when you need it.
Many of us will carry you and yours with us in thoughts, reflection and — yes — prayer. You’re not alone, sis.
Michelle Lowery says
Christina, I’m keeping your dad and your family in my thoughts. I’m so glad he has you all around him to support him as he goes through this, but remember to take care of yourself, too. Please let me know if I can do anything to help.
Thank you all for your comments.
SB, thanks for sharing your own battle with MCL. It gives me hope, although I know my dad has a hard road ahead.
Ruud, I thank you for spreading the word and offering your support.
And to my other friends, you guys mean so much to me. Thank you for everything.
Patty Knowlton says
As always my thoughts and prayers are with your Dad and family. I know that once the doctors find exactly what they are dealing with they can fight it harder.
My mom was diagnosed with MCL in October and she has taken three sets of chemotherapy already. I honestly hope your dad gets better and certainly understand what you’re going through.
I admire your disposition to share your experience, wich I find remarkably easy to relate to. I live in the Dominican Republic and it is amazing how the similarities, between both our relatives case and treatment, differ very little in spite the social surroundings and location.
I hope you and you family find the peace necessary to confort your father.
God bless you.
I have MCL. Hit me in 2004 – had most of large intestine removed (no bag thank goodness) and then CHOP Chemo followed up with Rituximab. It was pretty tough when it came on as I am a sole father, stressful business etc and I had my 3 youngest daughters at primary school. I remember praying that all I really wanted was to see my youngest get into high school and be strong and independent. God listened and Beth started high school this year. 6 years (from 2004) is a good run with this cancer. It came on again this year and I am just back from hospital after the 3rd round of ICE Chemo (much more agrressive) prior to a stem cell transplant in January. We shall see. The point is to thank God for every day given and everything else that HE blesses us with. I have never been so aware of my children, the sunrise, the sound of rain on the roof, whatever. Strange – I have never been so content or happy just to be alive. My best wishes, Rob
Frank S. says
My prayers are with your father & your family Christina.
I also am a MCL survivor by God’s grace and by the wisdom He bestowed to doctors and scientists who are fighting these blood cancers. My miracle treatments have been done at the City of Hope in Duarte, California. [ http://www.coh.org ]
Right now, I am a week short of 100-days after my stem-cell transplant & and in remission – after the RCHOP/Chemo etc…
So, I do encourage you and your family to hold on to Hope,
have faith, and receive God’s grace & love in walking through this process and time.
Send your dad to Utopia Wellness in Oldsmar, Florida. It will cure him.
Terry Lee Casady says
My prayers are with you and your family. I too have been diagnoised with MCL on 3-2-12. My treatment plan consisted of 3 phases. First phase, 6 one week chemo treatments in hospital with 2 weeks off at home. I just completed 6 rounds of week long chemo treatments. Every thing looks good. I have completed 2 and have 2 more spinal tap chemo injections to complete phase 2 of my treatment plan. Since MCL is so aggressive it likes to cross the blood brain barrier in an attempt to survive. I urge everyone with MCL to check into the spinal tap procedures to prevent MCL from crossing the blood brain barrier. Phase 3 is stem cell transplant which is scheduled for Aug-Sept time frame of 2012. Anyone who wants to know, I will keep them informed as to my progress. Everyone that meets me wants to know how I can be so cheerful, content and happy. My answer, I love my children, family and grandchildren none of which want me to give up or quit. For them I will eat, exercise and be happy no matter what. I firmly believe in drinking juices and green teas with pomagrante. Don’t worry be happy!!! We can beat this with proper treatment, a paositive attitude and behavior.
Praying for you from Michigan, may I ask how old you are? And where you are being treated.
Terry Lee Casady says
I am 56 and I am being treated at MD Anderson Cancer Center
emily franklin says
Hi – My dad was just diagnosed last Friday with MCL. Waiting for staging this week after CT scan and bone marrow biopsy. Wondering if you could give an update or advice? Feeling scared and sad and lonely. Dad is my closest confidante and is only 67. Thanks.
Terry Lee Casady says
I am curently undergoing stem cell transplant (my own stem cells). So far so good. Positive attitude, eat all the time at least 3 meals a day and snacks, exercise as much as you and support from family makes a big difference as far as I am concerned.
I will keep you and your family in my prayers!
My dad was diagnosed about 5 years ago and now after many radiation therapies and surgeries, the doctors are now giving him chemo (I’m not sure what kind) once every 3 weeks and then a stronger dose of chemo and will have to stay in the hospital for the higher dose. He will have following that, I stem cell transplant with his own cells prior to the chemo treatment. I am trying to keep positive at times, but it is REALLY hard at times. He remains in my prayers, but it is hard not to be mad at God and ask why my dad, since he is such a great person as so everyone who I’m sure also is fighting cancer. Your dad remains in my prayers and as for everyone else too whom is fighting this awful disease!
Christina, how is your dad doing may I ask?
Terry Lee Casady says
Hi Kristie, I was diagnoised on 3-2-12 with MCL. I am 56 and did a lot of research on the internet. I found more negative information about MCL then I liked. However, this gave me the drive to put some positive information out there for people to find. You obviously found my posts. I say the person with cancer, family and friends need to stay positive as all that I have read and experienced personally shows those are the ones to succeed. Do not blame anyone, god included. Life has obsticles, what and how we deal with them determine who and what we are. You are obviously a very strong person and I am sure your father takes comfort in that. My prayers will remain with you and all your family. Just know, I am here for you when needed.
Terry Lee Casady says
Congrats Jennifer! I am so happy for you and your family.
Terry Lee Casady says
Jennifer, I can not agree with your last comments more. All I was finding was negative comments and wanted to change that. I have just completed my stem cell transplant and will be released Thursday. Everything went well. Doctor says I need two weeks to a month of rest and recovery at home and I will be back to healthy and normal.
Debra Luciani says
Dear everyone who have posted
Your stories see heartfelt. My husband 42 years old just diagnosised with MCL last month. He is in stage 3-A. On Tuesday he’s having a second biopsy this time to remove a large affected node in his neck. We should know after Thanksgiving what type of chemo he will have. They told us that it may be the complex chemo that requires hospitslization for a week every 21 days then preparation for stem cell and none marrow transplant. I’m trying to hold it together but on occasion a meltdown. I’m a nurse and now wish I wasn’t. My son is 20 and struggling. Any ideas how I can help him. What kind of emotional support has helped all of you.
You are all in my thoughts.
Debra Luciani says
Thank you Jennifer. I will check out your book. I’m trying to get my husband more in charge of is cancer. He’s so afraid and right fully do as I am too. Thank you again for responding.
I’m glad to see such a positive conversation going on here! For those who asked, my dad just got the results of his latest PET scan last week, and it was “no better or worse” than the last time, which is good news. He’s been in remission for over a year, and while he does have some “indolent lymphoma” hanging out in his colon, it’s not doing anything to him right now.
John Hartman says
All, it is great reading the positive outlooks and outcomes of you all. I was diagnosed with MCL 2 years ago, finished treatment (maxi-R-Chop/Ara-C) with a stem cell transplant at the end. Complete remission and my plan is to stay that way. I too noticed how much bluer the sky was, and greener the leaves and the beautiful colors of autumn after my diagnosis. Its truly a more wonderful and vibrant life now than 2 years ago. I appreciate and am more thankful for my friends, family, neighbors and cohorts, and especially my wife who has always been the greatest. The treatment is only difficult or burdomsome if you let it get you down. I had some rough days, but I never had, nor ever will fell sorry for myself. Keep the faith.
Tonya Childs says
My step father is 75 and got his diagnosis today. Stage 3 MCL. I have never heard of this so I looked on the Internet and found your story and everyone’s comments. It feels good to hear the stories of recovery and living with cancer. My stepfather started his cancer journey several years ago with stage 4 esophagus cancer. He beat that and then had to have a kidney removed due to the damage from cancer treatment. For the last 3-5 years he has been doing well, great in fact, and is still doing well after getting the news today. Treatment starts January 4th and I am optimistic especially after what I have read here. Thank you and everyone for your words of encouragement and your stories as you are in my prayers I hope my stepfather will be in yours.
I love that I came across this. My uncle, Terry Lee Casady (who posted on this several times) passed away recently on Jan 23, 2013. I love reading his positive words, he was a very strong man. He never had a negative thought about his recovery, he had hope until the very end. I hope all of you the best in life, please be strong like he was and always have faith.
i love you, uncle terry.
Jennifer Weatherstone says
Within the laws of attraction, mantle cell is also associated they say with too much absinthe that has come periodically in the water. Tainting Sydney and the world to create sickness among the masses.
God Bless all the people that are diagnosed with cancer. You can stay positive, with this teachings being followed as the case of the studies has shown that the cancer disappears just like magic.
Debra Luciani says
I’m so sorry yo hear Terry has passed. Would you mind sharing what happened over the last few months.
Debra Luciani says
My thought and prayers are with you and his family.
Thank you, unfortunately we knew it was coming towards the end. After his Stem Cell Transplant everything seemed as if it went good, shortly after his leg swell up again very bad (the first time this had happened, doctors said it was a blood clot and the believed it was a blood clot again). Doctors found out they were tumors that spread through his leg and kidneys and I believe his liver as well. After being hospitalized again, they told him there was nothing left that they could do and that they were going to send him to a Hospice to spend the rest of his time comfortably. By this time both of his legs were twice the size of his body and he gained an immense amount of weight within a month. My father was down in Florida with him the remaining 2-3 weeks of his life, at the hospital they were told Terry had 2-4 weeks left to live. After transporting him to the hospice, the nurses kindly told us their opinion based on their experience on how long my uncle had to live, and they told my father that they don’t believe he would be with us more than a week & a half or two. My uncle only had one wish the first night at the hospice, and it was to just go sit outside for a while. Sadly, it was too cold that night to take him out, and the next day my uncle was unconscious so he never got to go outside. After close to a week, my uncle’s legs were turning black with gangrene and he passed at 6:30 AM January 23. Within the week he was unconscious, he was still fighting for his life and responded to my dad by raising an eyebrow whenever he spoke to him. As he dying my father told him to let go and be at peace and he passed. My father lost his best friend, his brother that day, and we all lost a very big part of our hearts. Since the beginning, until the day he died he fought and he stayed positive. I never once heard him say anything negative or that he was not going to beat it. He took the bull by the horns and he had his dreams/plans for after the cancer was done with and he stuck to that hope. I wish the very best for anyone who is going through what my uncle went through, and the family members/friends that are suffering with them. Please keep up hope and stay positive, do not think of the possible outcomes that will bring you down. I very much want to help raise awareness about Mantle Cell Lymphoma for my uncle, and every victim or survivor.
Debra Luciani says
My heart aches right now I’m so so sorry. Thank you for sharing his last weeks with us.
My husband does have MCL and we are in the hospital as I speak, 2 weeks now. Hard chemo and stem cell collection. Tom is 42 brave and fighting. Is spirits do drop and gets sad and discourage but rebounds again. Like a roller coaster.
I’m trying to stay hopeful, its hard knowing tom will relapse some day.
Thank you again.
Just found this site. My husband was diagnosed with stage 4 MCL with blastic variants. (not good).
He was only in remission (if he was the first time) for 2 weeks.
He received his stem cell transplant with his brother as a 10 out of 10 match.
He has been more in the hospital than out since the 13th of Nov.
In less than 100 days the cancer showed up in his sinuses. They are using radiation.
The last petscan and biopsy did not show the cancer in any other place.
I do not know if he will ever have a quiality of life again.
I can see his positive attitude dwindle a bit.
Every day is so precious, being the only caregiver is tiring.
I may have to quit my job as the only two friends that helped, Im sure would get burned out.
I do not want that to happen.
My husband lost 50 plus pounds and was pretty weak. He fell down the stairs and fractured
his arm, rib and collar bone.
Back in the hospital
Debra Luciani says
I’m so sorry to hear of your husbands diagnosis. My husband too has MCL stage 3 and has been on extremely high doses of R-MCHOP.(methotrexate) Then had consolidation treatment with Cytarabine, Etopiside, and Rituxamab. We have been currently in the hospital again at UCSF medical center. He has just gone through an extremely difficult chemo with bone marrow suppression. Carmustine, Etopiside and Cytoxan. My husband is 42 years old and doctor told us Tom received the very max dose of each of these poisons. It was miserable. Tomorrow he is getting the stem cell transplant, autogulous.
Did your husband relapse after the transplant or just the chemo? Can you explain.
I so do understand just how emotionally draining it is. I hate thinking myself as a caregiver, but I’ve been with him every night in the hospital. He just couldn’t of done it by himself. He gets angry a lot and yells at me. It’s hard not to feel sorry for myself occasionally.
My husband was just got on social security disability as you may know under SSD guidelines MCL falls under one of the Compassionate Allowance diagnoses, so therefore is automatic approval.
Please write back.
Just to touch base with everyone:
My dad finished his R-CHOP therapy. I can’t remember how many he received, but he finished them about 2 weeks ago.
My dad is starting his intense type of chemo this Friday. I am not sure what kind it is because the doctors have not told us. My dad had a shunt put in his chest today for when they take out the stem cells and put them back in following his intense 6 chemo treatments during his 3 week in-hospital stay. I am still scared, but I am praying that he has lots of angels watching over him to make him strong so he can beat this cancer and be on this earth to see me get married and see my children and his future grandchildren grow up.
Jennifer, how did things go with you? How the the apricot seed oil and vitamin B17 working? are they keeping the cancer away?
I hope all is well with everyone. Keep in touch!
With love and prayers,
Laura Hagen says
Christina, please give an update on your dad. My dad was just diagnosed with MCL–we don’t know what stage yet. I’m kind of in shock, panic-mode, despair, and some hope off and on.
Annalisa Franks says
Thank you for sharing your story. My father was diagnosed with MCL in 2003, at the age of 65. He was diagnosed with prostate cancer first and when they remove some of the lymph nodes near the prostate they discovered the lymphoma. One of the doctors at the hospital did some research and realized that it was due to an exposure to agent orange in Vietnam. His lymphoma was also in his bone marrow and he began to undergo many rounds of chemotherapy (he also did the R-CHOP, before eventually getting a bone marrow transplant. He was in remission for seven years after that. He is getting underwent chemotherapy but a different kind this time. This one lasted for three years. When it came back for the third time they put him on a pill that responded like chemotherapy focused on this specific kind of lymphoma. He had to take four pills a day for the rest of his life. This only lasted 18 months before it came back again. He was diagnosed for a fourth time in October 2015, he was hospitalized in February 2016 for symptoms that resembled pneumonia. He passed away on March 17, 2016. He fought this terrible cancer for 13 years. When he was diagnosed they gave him only two years to live. He was my hero and I miss him terribly every day! Fortunately, I was able to be within the last week of his life in the hospital and I cherish every single minute of it!! I will be praying for you and your family and hope that good news is on its way!
Debra Luciani says
My deepest condolences to you and your family.