Santana's Journey with Mantle Cell Lymphoma

  1. 1 Procedure or Surgery Icon Procedure or Surgery
  2. 2 Oh No Icon Oh No
  3. 3 Decision Point Icon Decision Point
  4. 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  5. 5 Decision Point Icon Decision Point
  6. 6 Celebration Icon Celebration
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  8. 8 Procedure or Surgery Icon Procedure or Surgery
  9. 9 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  10. 10 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  11. 11 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  12. 12 Radiation Icon Radiation
  13. 13 Decision Point Icon Decision Point
  14. 14 Celebration Icon Celebration
  15. 15 Loss Icon Loss
  16. 16 Oh No Icon Oh No
  17. 17 Procedure or Surgery Icon Procedure or Surgery
  18. 18 Other Care Icon Other Care
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  22. 22 Side Effects Icon Side Effects
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  25. 25 Radiation Icon Radiation
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  27. 27 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  35. 35 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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    ???
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  38. 38 Radiation Icon Radiation
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    ???
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  71. 71 Decision Point Icon Decision Point
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  74. 74 Radiation Icon Radiation
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Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Mantle Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 12 years ago, Male, Age: 51, Stage IV

  1. 1
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Surgery

    Procedure or Surgery

    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.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Got the results from the Biopsy

    Oh No

    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.

    0 Comments
  3. 3
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    To go to Stanford for a Trail for my Mantle Cell

    Decision Point

    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.

    0 Comments
  4. 4
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    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.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    To keep working or not!

    Decision Point

    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.

    0 Comments
  6. 6
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Finished treatment

    Celebration

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

    0 Comments
  7. 7
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  8. 8
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Surgery

    Procedure or Surgery

    Lf Lung Biopsy, came back positive for MCL

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  9. 9
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    One round then a scan. Did not work.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  10. 10
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

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

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  11. 11
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Third one also did not work so on to Radaition

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  12. 12
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    External radiation

    Radiation

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

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  13. 13
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    To get a Stem Cell Transplant

    Decision Point

    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.

    0 Comments
  14. 14
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Two perfect matches for transplant

    Celebration

    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.

    0 Comments
  15. 15
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Lost loved one

    Loss

    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.

    0 Comments
  16. 16
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    My transplant donor DQ'd

    Oh No

    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!

    0 Comments
  17. 17
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Stem Cell Tranplant

    Procedure or Surgery

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

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  18. 18
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Hypotherapy

    Other Care

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

    0 Comments
  19. 19
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Remission

    Celebration

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

    0 Comments
  20. 20
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Got a lung infection

    Oh No

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

    0 Comments
  21. 21
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Home care

    Other Care

    This person has yet to add any details about this experience.

    0 Comments
  22. 22
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Depression/Anxiety

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  23. 23
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Went to ER and got told

    Oh No

    I had a hernia, great!

    0 Comments
  24. 24
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Surgery

    Procedure or Surgery

    Got a hernia in my left grion repared.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  25. 25
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    External radiation

    Radiation

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

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  26. 26
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Cancer is shrinking

    Celebration

    This person has yet to add any details about this experience.

    0 Comments
  27. 27
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 9 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

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

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  28. 28
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 9 years ago
    Santana's Avatar

    Cancer has spread/Metastasized

    Oh No

    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.

    0 Comments
  29. 29
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 9 years ago
    Santana's Avatar

    Relationship issues

    Oh No

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

    1 Comment
  30. 30
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 9 years ago
    Santana's Avatar

    Stop All Treatment

    Decision Point

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

    0 Comments
  31. 31
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 9 years ago
    Santana's Avatar

    In Hostipal getting treat for Pneumonia

    Oh No

    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!

    2 Comments
  32. 32
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 8 years ago
    Santana's Avatar

    External radiation

    Radiation

    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

    Painless Experience: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  33. 33
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 8 years ago
    Santana's Avatar

    Cancer is shrinking

    Celebration

    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.

    0 Comments
  34. 34
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 8 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    2 Comments
  35. 35
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 8 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    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

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    4 Comments
  36. 36
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 8 years ago
    Santana's Avatar

    Oh No

    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!!!!

    3 Comments
  37. 37
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 8 years ago
    Santana's Avatar

    Birthday

    Celebration

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

    1 Comment
  38. 38
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 8 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  39. 39
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 8 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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

    3 Comments
  40. 40
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 8 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  41. 41
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 8 years ago
    Santana's Avatar

    Remission

    Celebration

    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

    4 Comments
  42. 42
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  43. 43
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  44. 44
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Cough

    Side Effects

    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.

    0 Comments
  45. 45
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Anniversary

    Celebration

    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.

    0 Comments
  46. 46
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Bought a House

    Celebration

    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

    0 Comments
  47. 47
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

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

    0 Comments
  48. 48
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Get on the CAR-T Trial

    Decision Point

    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.

    0 Comments
  49. 49
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    External radiation

    Radiation

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

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  50. 50
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  51. 51
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

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

    0 Comments
  52. 52
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Change who does my radiation from local to Stanford. 1:15 mins away.

    Decision Point

    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.

    0 Comments
  53. 53
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    Pain

    Side Effects

    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

    2 Comments
  54. 54
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  55. 55
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 7 years ago
    Santana's Avatar

    CB-8 from Stanford

    Clinical Trial

    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

    0 Comments
  56. 56
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  57. 57
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    To get Radiation treatment against recommendation from Radiology

    Decision Point

    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.

    0 Comments
  58. 58
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  59. 59
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  60. 60
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    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.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  61. 61
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Health insurance issue

    Oh No

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

    0 Comments
  62. 62
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Clinical Trial

    This person has yet to add any details about this experience.

    0 Comments
  63. 63
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    To take part in a Trial called Car-T done by Seattle

    Decision Point

    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.

    0 Comments
  64. 64
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Surgery

    Procedure or Surgery

    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

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  65. 65
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  66. 66
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Chemotherapy

    Drug or Chemo Therapy

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

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  67. 67
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Breakthrough

    Celebration

    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,

    0 Comments
  68. 68
    • Santana
    • Experience with Mantle Cell Lymphoma
    about 7 years ago
    Santana's Avatar

    Psychosocial

    Other Care

    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

    0 Comments
  69. 69
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 7 years ago
    Santana's Avatar

    Car-t for Mantle Cell Lymphoma

    Clinical Trial

    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.

    0 Comments
  70. 70
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 6 years ago
    Santana's Avatar

    Low platelet counts (thrombocytopenia)

    Side Effects

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

    0 Comments
  71. 71
    • Santana
    • Experience with Mantle Cell Lymphoma
    almost 6 years ago
    Santana's Avatar

    Accept I have a Tumor that will need Radiation

    Decision Point

    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.

    0 Comments
  72. 72
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Bowel obstruction

    Side Effects

    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.

    0 Comments
  73. 73
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Cancer is back/Recurred

    Oh No

    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.

    0 Comments
  74. 74
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    External radiation

    Radiation

    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.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  75. 75
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Hurt My Shelf doing heavy lifting too soon after Radiation

    Oh No

    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

    0 Comments
  76. 76
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    colonoscopy

    Procedure or Surgery

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

    Went as Expected: Not Specified
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  77. 77
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    I have a Restriction in my colon

    Oh No

    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.

    0 Comments
  78. 78
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    I had Back pain a Bulged Disk

    Oh No

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

    0 Comments
  79. 79
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Surgery

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  80. 80
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Anniversary

    Celebration

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

    0 Comments
  81. 81
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Health insurance issue

    Oh No

    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

    0 Comments
  82. 82
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Infection

    Side Effects

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

    0 Comments
  83. 83
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 4 years ago
    Santana's Avatar

    Nose Drain/Flushing 9-27-2017

    Other Care

    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.

    0 Comments
  84. 84
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
    Santana's Avatar

    Anniversary

    Celebration

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

    0 Comments
  85. 85
    • Santana
    • Experience with Mantle Cell Lymphoma
    over 3 years ago
    Santana's Avatar

    Just Diagnosed

    Oh No

    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

    0 Comments