Santana's Journey with Mantle Cell Lymphoma

Aug, 2010 I saw large lumps in my Rt grion and Lf Arm pit. Dr did blood Work and when it came back OK, he recommended a biopsy. It was on Friday the 13th. Woke up with my wife crying because the Surgen told her is was more than likely cancer and to prepare herself anyway that she could. I saw she was upset and said do I know you, this is not my wife. It helped ease her and I got her to smile.

I was like shocked and in a strange way happy! By the time I met the local oncol DR everthing in my lower extremities have swollen. I mean everything, yes even big cahunas, like grapefruit size.

I was told I had stage 4 and it was the very aggresive type. Got a call from the trail Dr as I was getting a prescription and was on my way to Stanford. Happy I was going to be a part of the cure.

For the trail in Stanford I need to go through 6 months of Chemo. My swelling went down after 1 month. I stayed in the hospital for 4 days and the 3 week off then back for 6 cycles.

I was told not to work, but with WiFi allowed me to keep work from the hospital. It was easy and it allow to stay in denial.

Finish my 6 month of chemo and the Dr told that it was all gone! On my way to Auto Transplant Trail in Stanford.

In my pre-trail PET scan done 2 month after my last chemo the cancer was back in the lung, and I was no long asked to take part in the Auto transplant Trail.

Lf Lung Biopsy, came back positive for MCL

One round then a scan. Did not work.

2nd chemo differnt than first two and it did not work per 2nd scan.

Third one also did not work so on to Radaition

This took care of my Lt lung and I was ready for transplants

Becuase the cancer came back and in a differnt area they suggested a transplant from a Brother or Sister. So I agree to have my 13 siblings tests. That gave me a excellent change to find one.

two pefect matches is very good! I now have a backup if needed. My brother and my Sister. My brother ask to be the back up, like it was up to him.

My dad passed away from the same cancer I got, but he was 92 and it took him. Mantle Cell that is not found to be passed down.

I had two perfect matches for my strem cell transplant. My brother and Sis where both perfect. 3 days before the transplant my bother bloodwork came back with a positive viral infection. My sister was then called to give her stem cell. the OH no is a greater rick of GVHD!

I had to trust it was going to work. I though it was not and I was a gonner.

I was told/thought to be positive vs Negitive. this saved me!

The trasplant worked and took care of the cancer with no chemo or radiation needed.

This was because they put me on high dose of Imune suppresants and steroids

I had a hernia, great!

Got a hernia in my left grion repared.

This was because I could not walk. the tumors 2x in size in the last month.

4 rounds of chemo to get my lung tomors small for 2nd transplant.

Sorry, latest scan showed my tumor grew and got more active and I also have a new large active tumor on my chest. Stanford called and told me the great news last night. They cancelled my BMT appointment and told me that I may now qualify for a trial I didn't before this scan. So, positive/negative news. Going to see trial Dr. on Friday. I got to fight for my right to party, need a 40oz tall boy.

Decided to leave home, going to find a new place to live. Eff the system

I decided to end treatment ready for the next phase in my Journey

Well on Thrusday I started getting fevers 101 and by Friday I had chest pain to go with that. I think it my have been the result of comeing to the hospital for bloodwork each week. I needed my plarelets of over 50 and they have not been up since my last chemo sixe weeks ago that did not work for I can start the ibrutinib trial. So hard to even start a trail once you qualify. Friday's blood work showed I was neutropenic. That has been better last two days of morning XXX. man I never thought those would be so painfull. Things that DR's recomended do not always work and can even hurt future treatments. Plus I am know waiting in the hospital and not liking it all that much. Problem I have the tumor in my lung has got so big it has cut off any fluid from getting past! I told them they should have Radiated me on my lung when it took care of my stomach tumors, but they said noooo! I had great bloodwork back then but not today thanks to Chemo that my have worked. I get over this hump in the road, just off a bit because I was asked the standered would you like to be resuscitated if something happens I said only once! Than please ask me agian after I go through that one!

I did 17 days of Radiation to shrink my tumor that was 5" X 3" in my RT lung. It restricted fluid from that lung to flush out and caused pneumonia. The grew in the last month because I had no immune system from the 4 month of Chemo. Since the Transplant anything I get the neurtpinaic I get hospitalized. I had Radiation twice before but this time I felt more weakness. I also had problems and pain swallowing but that only lasted two weeks. Thank you

CT scan shows my tumor in my RT Lung has shrunk by half. And Last Wednesday FDA approved Ibruntinib this Wednesday 11-27-2013 and they said that voriconazole 200 mg tablet I am on will not mix well They want to stop my voriconazole before I go on Ibruntinib. So I am feeling happy and optimistic. I heard it the best things for Mantle Cell Lymphoma on the market. We shall see. It time for the next chapter, glad I am no longer waiting for my bloodwork to improve and meet the Stanford Trial for Ibruntinib. I was think my platelets would have never come up.

Well this is the pattern for me, new Tumors sites and the ar growth fast. I can see the one on my hip that grew from nothing, to a 2x2 inch mass from Thanks giving to X-mass. PET scan confrimed. Good thing FDA approved Ibrutinib on Nov 13th. My Dr has working on get me on this new wonder drug.

Ibrutinib is the name, and I was not sure on taken Chemo agian. But then I read more and got more educated on it. First I had to change my Anti-fungal from Pill Vorconecil to a daily IV Castrofungin. This required get a line put in. It was the fourth time I needed to get one inserted. I request a Central Hickman Pick vs a Port that goes under the skin. Since, I was going to need to adminster the IV myself at home I knew this was be best one for me to get. Per my request I got and it work out great. It took me have it for a week to see that it was not big deal. I guess I knew what to do to care for it. As the DR told me I felt better after two weeks. Note A. My liver count went to 300+ after 2 weeks and the Nurse who saw me that day told to stop taken it. I said that I could not do that because the 1st dose was a month then They could stop or adjust. I told that she needed to call Stanford where I got my 2nd option and they aggree not to stop. The following week my liver count improved. Four weeks after I start the tomur has decreased in size. I felt so good I went for a steap short hike Saturday and Monday after that hike I got labs that came back with 600+ liver counts and my Dr stop it for a week to see if the liver count came down. They did but the mass grewth quickly back to it largest size. So after being back on this drug for a week at 3/4 dose my liver counts kept decreasing that now I am back on full dose. I think it was the hard exersize. Well lets see if i can shake this cough and get my energy back. No more hikes for me. Santana

Does not look like the treatment is working and my tumor is growing. That was my last hope, it time to start planning to go down swinging!!!!

I made it, I am 43! Love is all we need to hold on!

Well Round # 6 this time the tumor in my RT hip was removed with Radation. So far Radation as got 4 time before and each time it has come back in a differnt spot. It was done locally 10days of 3 weeks, cause of construction.

Well, Two weeks after I went into remission for the sixth time, I noticed a hard growth above my right eye. Two weeks ago I was admitted into the Hospital for Ririno Vires, and Bacterial infection in the lung. They also confirmed Mantle Cell above my right eye. I am starting Radiation this week to get rid of it. So, on to round # 7, I look like a MMA fighter or boxer. Someone asked me if I was a fighter, and I said yes that I was fighting Cancer, (fighter that is in round #7). The way I see it, is I won the first 6 rounds, and I am ready to end this fight against cancer with a knock-out. This time it is harder because the tumor is on my face. People will say I look good less often now, but I know people who love me will treat me the same. I used to think, if they only saw my tumors, they might not say I looked good. Peace and Love Santana

Just week after my 6th remmision I notice tumor site #& over my right eye. I knew what it was and the Radtaion treatment was the only option and it was eurgant to get Radation ASAP. My eye was completly shut when I start my 17 days of radation. By the time I was done my eye was a little red and sun burnish. I am glad i noticed and took action early. I used all the tricks that i learned in dealing with cancer in the last 4 years in order to make it happen. I pushed the issues that I needed and wanted radation asap. So, the DR aggreed and know I am in remmission #7.

Got My PET Scan results and I am Cancer Free, Feeling Good Feeling alright. Next appiontment is in a month. 7 th remission in four years. In has been four year since I was told I had an incureable cancer Aug 2010 to Aug 2014. Now it a waiting game to see if it comes back, but if it does I going to knock it out agian. I am a blessed warrior. Santana

Well three week after my last Tumor I felt another one behind my left knee. I asked for a full body PET scan but the weeks before but after I question the DR, he said he thought he order it but end not ordering correctly and they stopped at the thigh. Good thing I do self checking and I have been able to notice the last three tumors. On to Radiation again.

Well I got 10 treatments and the tumor has shrunk to when I first felt it. We will see if it all got in three week after my last treatment.

Been dealing with Lung infections since I tried the new Drug for Mantle Cell Lyth in January. Side effects weak lungs or lung issues. Thought we got rid of it twice before but it always come back, will now add a Lung specialist.

Got a Stem Cell Transplant 3 years ago today. 10-07-2011. Got my sisters blood, and now I waiting to get all my immunizations all over again. I think the transplant has help make me stronger on fighting cancer tumors, but each time I get treatment, I get sick, then it is a lot on my system. So blessed I made it this far with a fighting attitude.

When I started Radiation in July I got a call from the Landlord saying they wanted to sell the house we rented by the end of the summer. It was hard to deal with, but I suggested we should not only look for rentals, but to also look at purchasing. Well we did buy and we moved in all in the time going to treatments and 7th and 8th remissions. Glad I was made strong and was able to keep work over the last 4 year of non-stopped treatments. Why do you still work? They always ask and I say staying home in bed will not make me feel any better/different, so why not go to work and live normally. I just a Cancer Killer I guess I aim to Thrive not just survive. Santana

I found Tumor #9. Will Get Radiation agian i guess.

It is back on the East cost and I am from the west coast. I do not want to count on it, incase I do not get on the trial.

Hope we get it all this time, I had a feeling we did not last time. New area but in the same area.

Well before the last day of my Radiation I found another mass lower on the left knee this time. Wow when it rains I tell ya.

They found one more mass during the Biopsy. This puts the plans or wishes and hope behind.

So, far I have had radiation 5 of my 7 tumors. Now I got radiation behind the knee back to back locally and one tumor is gone. The 2nd one was just above the latest recent one behind the knee area. By the end of my 8 day I found a new mass just below the latest recent one behind the knee area. I feel that they missed it because by the time I got my 1st treatment after the scan the mass was much bigger, thus the Radiation area was too small and it was split in two. And they did not even get the last area they radiated, cuz that has gotten bigger. So now that my insurance worked out the contract dispute with Stanford and I able able to give them a try to get the last and latest tumor site. This moved my scheduled DLI back 6 weeks and that push the CAR-T trial in NIH back to April/May 2015. Just lost confidence in my Local Radiation Team.

Now I have low Back/Hip pain that goes like this. Pain every day until Radiation decreases masses behind my LF knee (3 sitting, 4-7 Sleeping or laying down, and 7-8 standing or walking). What has helped me 1. Heat pack, or temp greater than 75 2. Moving, found some times if I stretch pass the pain. 3. Massage, I am a CMT and do self trigger point and fascia release therapy. Glad I know what to do to ease pain without pain pills. Back up Plan, I told my DR to proscribe me some Pain Meds, in-case no of the above are no long effective. Santana

This was the most Radiation I had ever. I had 2 tumors in the LF knee then they found one growing on my hip. I started 12/15/2014. Finished 1/13/15. 45 total treatments WOW! Day ten I start to lose feeling in my left leg, so they scanned and treated the four tumor this on push on my Nerve in the spine of the low back. Only radiated that area 5 days because that area had previous radiation.

1-22-15 Ten days after my last radiation I got my sisters B-cell only that would give less GVHD, because the radiation worked so well. This my work but 10% it will. Great news is that I am now Qualified for a CAR-T Trial in NIH in April and 90% of the MCL have been cure that are on the trial. YES!!! Lets do this

Feb 2015 during my 1-22-2015 treatment follow up: They did a MRI on my spine the result came back as; a tumor was found in my upper left side of my back, it is growing on a old tumor site that was radiated back when I got my hernia. two or three years ago. So now tumors that have been zapped with my best weapon I had before are coming back.

They called and told me that they wanted to make sure they I knew the possible side effects from doing too much radiation on that area. 1. Permanent nerve damage and possible paralysis. I said so i would no worse off than I am now, because I was currently dealing with some paralysis on my left leg. About 5% of the possible 100% but still said, that is a risk that does not scare me cause I would end up like I felt that day. So then I ask want the Oncologist said, he recommend get the tumor in order to get me ready for NIH enrollment coming in April 2015. I then asked yes I want to do it because it was a better risk for me to try it then let the tumor and cancer get going and spread.

This Radiation made me very fatigue, the most ever, but I stop the numbness in my left Leg. Last two tumors pushing on my Nerve and Spine.

April 1st I noticed a tumor on my Neck about the size of a pea. They did a Pet scan and found a tumor on my Neck, my shoulder, my ascending colon, my Lung, and my Spine. The Car-t trail I have been getting treatment for the last three years are rewriting their trait procedures. Thought I made to the my cure, because I was told that the trial had 90% cure rate. Going into phase two other Hospitals now did it. mostly all back east. I called one back last year when I found out they did it. I told that NIH was put on hold till April 2015. they responded that I should go to NIH better, and said they would not enroll me. SO I was so happy I made and that got the new they pushed it back to the end of June and try other hospitals.

This was a trail that was offered by City of Hope, Not Car-t but something only they offered. So i went and signed my consent form, but I was not feeling to confidant in this phase one Trail. But I had to do something cause, the cancer was grow by the day.

My insurance sent me a letter stated they did not cover the trial from City of HOPE. May 2015

The day I found out that City of HOPE was a no go, I heard back from Seattle who was taken new subjects every two weeks and asked me to send my Med Records and insurance info.

Once I found about the Car-t trial I may be in in less than four weeks, I decided to remove the tumor on my neck, because it was starting to effect my life. Surgery was done May 4th 2015. It was a success

Got one more tumor that I could see. It was three inches away from the Tumor that was just surgically removed. Plus the DR in Seattle said I was very weak and needed to stabilize before they would take me in the Trial.

May 15th, 16th I I start Chemo, (Rituximab every month, with Rivlimid 20 mg capsules.

I been on Tevilimid for a month and me local Dr says he is going to send Seattle a letter saying I am stabilized. They said they would enroll me if I stayed stable for four more week and I they review a PET scan done then. Today 6/13/2015 I am happy to say that the treatment is working to goo that I may not need to go to Seattle because the cancer tumors have got smaller by around 65% of the largest they got a moth ago. I am able to walk and be more alert, the 7 days I have not been on Revilimid I have gotten a bust of energy. Walk around the block trying to build muscle in may left leg. I can stand on my right leg for ten sec, can only get maybe 1 or 2 sec on my left when I stand on it. But feels good to be on the up and up,

Since I moved to Santa Cruz for my care, I talked to the support group navigator. We talked about all that I went through and and what I needed during the Treat I was getting with them. She asked I attended support groups, I said not much. I told her I had lots of support from my family, friend and Work family. (My company had been 150% behind my treatment and offered to let me work from home, hospital or office when I feel up to it. Latest they offered to pay my all my house cost if I was accepted to the Seattle trial that requires me to stay 30 mins away for 8 weeks straight.) I was and excellent Dr team on my case who all truly care for me. So feel I am equipped with the right tools and confidence to beat this cancer. I have felt that way since I beat my 7 tumor site in May of 2014. Today June 2015 I have had 21 Tumor site, that 14 more in the last year, after 7 in 4 years. So glad I have the positive attitude, and blessed and thankful for the support team I have around me. Truly surrounded by angel from above. They tell me I am a inspiration and very strong. I say I can't truly feel I will inspire anyone until I beat my cancer that has no cure. I tell them I go out and live my life as if I did not have cancer, pay for it because I do. But I feel that if I don't live this way cancer will win, and this one way of show cancer know it will never win, because I believe I will win and I will give it everything I got. I tell myself on my low days and those day are a little lower when you are not feel great physically, but I tell myself I got to push on through those day and that it is all only temporary. One love One day Santana

Wow July 4th this year @015 we drove into Seattle for a Trial called Car-t. 6 to 8 weeks and they asked if I could get there in a week. We did and I already got my cells Harvest in they are now in the lab getting genetically modified.

Getting weekly infusions, they did a bone morrow weeks ago. Hope this goes away soon, it been 8 weeks already of needed blood. Sad

Dr say that I may have GVHD that a recent infection may have sprouted. Man after 9 months, which the longest I gone with out any issues I have to decide if I want to suppress my immune system that is doing it's job keeping the tumors away. Getting a 2nd and third option.

Had my 1st one in Aug 2015 in Seattle during the Trail. Since I had two per year and would end up in the Hospital getting Fluids. I was able to adjust my diet to avoid getting backed up.

It started with a PET scan that the DR said it was not growing and actually did a write up it was not the day before the result of the biopsy came back Possitive for Mantle Cell.

Good thing that this tumor was in an area of my body that can still get Radiation. After waiting four months I decided to get Radiation in Feb 2017.

But found out after because of my low red blood count of 6.6. I got a unit of blood then the next week I went from 10 at 11-am. I pooped blood and was at 7 at 4 pm

Well good news it is not cancer, it is only Hemorrhoids and since I had low platelets.

They found that a 2 mm thin by 4 cm long part of my colon during the colonoscopy that explained my chronic diarrhea the past two years.

They told me my back pain and leg weakness. DR put me on Pain kills and sent me to PT

It was very frustrating because they send me to different Surgeons. it got done but because of my hurt back.

Aug 2010 was told I had Cancer, so 7 years Aug 2017 and still dealing with treatment management,

Bactria Infection After surgery. Was sent home on 14 days of 24 hrs IV Antibiotics. Need inhaled Antibiotic but it took 6 weeks to get approved. Flu each day but no fever . Took 2 different DR visits. run around but glad I kept the faith

C-Diff from years of Antibiotic's Aug 1 2017

this will help with chronic infections , 2 x a day fro two months was not thrilled I was asked to do this with out know if it will help.

2 years Cancer and Treatment for Cancer free. Longest I have gone without relapse. Feeling like no big deal.

IVg is low and that is the cause of my Eye, Lung, and Digestive problems. Hard to see some days and going #2 10x per days is making me lose sleep and weight. I know it is another side effect I have to adjust too figure out/educate. Life is good when you choose it