matty's Journey with Medulloblastoma

  1. 1 Procedure or Surgery Icon Procedure or Surgery
  2. 2 Decision Point Icon Decision Point
  3. 3 Decision Point Icon Decision Point
  4. 4 Oh No Icon Oh No
  5. 5 Procedure or Surgery Icon Procedure or Surgery
  6. 6 Procedure or Surgery Icon Procedure or Surgery
  7. 7 Oh No Icon Oh No
  8. 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  9. 9 Oh No Icon Oh No
  10. 10 Side Effects Icon Side Effects
  11. 11 Side Effects Icon Side Effects
  12. 12 Side Effects Icon Side Effects
  13. 13 Side Effects Icon Side Effects
  14. 14 Other Care Icon Other Care
  15. 15 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  16. 16 Side Effects Icon Side Effects
  17. 17 Decision Point Icon Decision Point
  18. 18 Oh No Icon Oh No
  19. 19 Oh No Icon Oh No
  20. 20 Radiation Icon Radiation
  21. 21 Side Effects Icon Side Effects
  22. 22 Celebration Icon Celebration
  23. 23 Procedure or Surgery Icon Procedure or Surgery
  24. 24 Procedure or Surgery Icon Procedure or Surgery
    MRI
  25. 25 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  26. 26 Side Effects Icon Side Effects
  27. 27 Procedure or Surgery Icon Procedure or Surgery
  28. 28 Side Effects Icon Side Effects
  29. 29 Side Effects Icon Side Effects
  30. 30 Procedure or Surgery Icon Procedure or Surgery
  31. 31 Procedure or Surgery Icon Procedure or Surgery
  32. 32 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  33. 33 Oh No Icon Oh No
  34. 34 Oh No Icon Oh No
  35. 35 Decision Point Icon Decision Point
  36. 36 Other Care Icon Other Care
  37. 37 Side Effects Icon Side Effects
  38. 38 Side Effects Icon Side Effects
  39. 39 Side Effects Icon Side Effects
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  45. 45 Loss Icon Loss
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Family/Friend: Brain and Spinal Cord Tumors in Adults > Medulloblastoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Male, Age: 33

  1. 1
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Surgery

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. 2
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Proton Radiation

    Decision Point

    Finally found a Dr. who is willing to quarterback the radiation treatment with Proton Radio in Jax, FL. He was evaluated and measured. Then sent back to So Fla for Chemo.

    0 Comments
  3. 3
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Traditional XRay Radiation or Proton Radiation Therapy

    Decision Point

    Initial consult for Xray was yesterday. Oncologist has rarely seen this type in an adult. Recommended Proton Therapy. Initial consult with them is Thursday.

    0 Comments
  4. 4
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Cancer has spread/Metastasized

    Oh No

    Lumbar Puncture revealed cancer is in spinal fluid.

    0 Comments
  5. 5
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Shunt #1 put in.Cranial pressure indicated that fluid is building.

    Procedure or Surgery

    Shunt Failed after 2 days. In and out of lucidity, behavioral changes.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  6. 6
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Shunt 2

    Procedure or Surgery

    Shunt two is in... seems to be working for now. MRI scheduled for today maybe hospital release.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Cancer is back/Recurred

    Oh No

    Yesterday, patient complained of increased neuropathy on his left side. ER visit. CT came back un-remarkable, blood tests fine - MRI showing the tumor is back and inoperable.

    0 Comments
  8. 8
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Did 4 rounds this week. They rushed day one so it was just IV. Day two tried to insert a Picc line - no luck. Day three able to get the Picc in, so it went a bit faster. Day four. Meds starting to really kick in.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  9. 9
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Cancer has spread/Metastasized

    Oh No

    The report from last weekend's tests have now been read by the original surgeon down at Miami's Jackson Hospital. He concurs that the tumor has indeed returned to the original resection area and a second has occurred near the pituitary and there are also numerous seeds throughout.

    0 Comments
  10. 10
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Fatigue (tiredness)

    Side Effects

    This is just the pervasive mode. I would estimate in bed for 22 hour per day.

    0 Comments
  11. 11
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Depression/Anxiety

    Side Effects

    Rx for Zoloft - one week ago. Sees to be helping.

    0 Comments
  12. 12
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Infection

    Side Effects

    Apparently sweat-glad infection is pretty common. Rx for a antibiotic seems to be doing the trick.

    0 Comments
  13. 13
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Nausea/Vomiting

    Side Effects

    It's been about two weeks since the 4 runds of chemo. At first he was handling very well. About a week after it began, nausea, headaches, weakness, and all the rest ensued. Hair loss to head and face and just general fatigue has set in.

    0 Comments
  14. 14
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Psychiatric

    Other Care

    Dr. Rx'd Zoloft for depression. Is definitely working.

    0 Comments
  15. 15
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Did another 4 sessions last week. Really hitting hard again now. Pretty much the same side effects as before.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  16. 16
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments
  17. 17
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    treatment

    Decision Point

    Two weeks ago the patient asked to die - this was at the low point after 4 straight days of chemo. Then he asked for someone else to make his decisions (on whether to continue treatment) for him. We said no. So long as he is of sound mind, he needs to make them. Recent findings and facts were transferred to his radiation doctor (5 hours away). The doctor wants him to start on proton radiation ASAP. Tomorrow he makes the drive to live in Jacksonville for the next 7 weeks. The radiation doctor has also said that he will probably be doing chemo and radiation in tandem for the next number of weeks.

    0 Comments
  18. 18
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Cancer has spread/Metastasized

    Oh No

    Yeah... those seed tumors that they found. Well, the seeds are dime sized.

    0 Comments
  19. 19
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
  20. 20
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    External radiation

    Radiation

    Proton radiation began on 4/29. Other than general fatigue it's too early to tell what else may be going on.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  21. 21
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    Was hospitalized Friday to Sunday and radiation had to be suspended Friday, Monday, and Tuesday. Wed. blood work came back better and radiation was continued.

    0 Comments
  22. 22
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Cancer is shrinking

    Celebration

    Proton Radiation is done with. The last CT showed the seeds are gone and the primary tumors were shrinking. That is at least some good news. The patient is back home recuperating for three weeks or so until the chemo sessions begin again. His overall physical appearance and capabilities are no better off then when he left 7 weeks ago. He still has balance issues, double vision (appt. at Bascon Palmer Eye Institute today), and little control over the shake in his hands. Walking is still with a walker and spends about 22 hours a day in bed. His drive to get any better physically is at a low.

    1 Comment
  23. 23
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    The original port was removed during the 3 week rest between Proton Radiation and the next rounds of chemo. The new one was just put back in as chemo is resuming.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  24. 24
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    MRI

    Procedure or Surgery

    New pre-chemo resumption MRI taken. Show no signs of seed tumors, no secondary tumor; primary is half the size since regrowth. Appetite is still way low - fluids had to be administered via IV for the past two weeks.

    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
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Appetite is still way down. Still in bed about 23 hours a day. Still having trouble focusing (double vision) hearing loss on left still present. Balance issues requiring walker present. Chemo 4 times a week per month resumes this week. Still taking Zoloft.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  26. 26
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    Cell count crashed last week. Also low potassium and low magnesium plus fever. Admitted to hospital.

    0 Comments
  27. 27
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Transfusion

    Procedure or Surgery

    Complete transfusion during hospital stay of three days.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  28. 28
    • matty
    • Experience with Medulloblastoma
    almost 4 years ago
    matty's Avatar

    Loss of appetite

    Side Effects

    Patient is eating less than 1000 calories a day. Dr's say unless he steps it up they will consider a feeding tube.

    0 Comments
  29. 29
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

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

    0 Comments
  30. 30
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Another Transfusion

    Procedure or Surgery

    It seems about a week and a half after chemo his white cells just crash and he gets a mild fever. This time, they did not admit him to the hospital - they did an office visit transfusion.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  31. 31
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    MRIs

    Procedure or Surgery

    So MRIs were taken and compared to those of about two and half months ago. Seeds are still gone. Primary is the same size as it was. So that means stable. Not sure that that is so good. Also, showing a rather large (6cm) legion in his left lung. That is probably very bad - CT scan tomorrow.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  32. 32
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The last of the chemo has been administered.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  33. 33
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Shunt failing

    Oh No

    Shunt needs to be replaced. Looks like that will be happening in the next week or two.

    0 Comments
  34. 34
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Cancer has spread/Metastasized

    Oh No

    Loss of balance over the weekend, let to an ER visit. CT scan and MRI have confirmed the cancer has spread.

    0 Comments
  35. 35
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Proceed chasing the beast or not.

    Decision Point

    Patient was scheduled to have a lumbar puncture to confirm what three Dr's and a University Hospital have already agreed upon. The cancer is back. Lumbar puncture, transfusion and shunt replacement have all been cancelled.

    0 Comments
  36. 36
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Hospice

    Other Care

    Late last night the patient was transferred back to his house and his parents (along with hospice) will help him through his last bit of his journey.

    0 Comments
  37. 37
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Bladder problems

    Side Effects

    Can no longer urinate on his own. Catheter has been used for a week now.

    0 Comments
  38. 38
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Confusion

    Side Effects

    A sort of confusion/dementia has set in - there are prolonged moments of lucidity. But his communication motor skills are poor. Thick tongue and tight jam and slurred speech make it difficult.

    0 Comments
  39. 39
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Swallowing problems

    Side Effects

    All meds have been changed to liquid form. Food is limited to a few teaspoons of apple sauce a day.

    1 Comment
  40. 40
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Shortness of breath

    Side Effects

    O2 is being administered as necessary.

    0 Comments
  41. 41
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Paralysis - Lower

    Side Effects

    Patient no longer has feeling or mobility from the waist down.

    0 Comments
  42. 42
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Communication Problems

    Side Effects

    Slurred Speech has set in. Frustration on the patient's part and the family. Inability to communicate wants and needs.

    0 Comments
  43. 43
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Eating problems (anorexia)

    Side Effects

    Food intake has stopped as of a few days ago. Water is minimal. Perhaps 4 ounces per day at this point.

    0 Comments
  44. 44
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Mood changes

    Side Effects

    Agitation, combativeness and all around restlessness has become the norm when the patient is awake. Meds are being administered to counteract as much as possible. Morphine, Haloperidol and Atavan are being used. The end is near, but not near enough for all involved at this point. Everyone is suffering. Hospice doctor says that the cancer just has to take him at this point - the problem is that his 29 year old heart and lungs are not going to give up the fight that easily. So difficult to witness.

    0 Comments
  45. 45
    • matty
    • Experience with Medulloblastoma
    over 3 years ago
    matty's Avatar

    Lost loved one

    Loss

    Shaun 1984 - 2013 11 months from diagnosis to dead. I have tried to keep witness to this timeline as a testament to my brother in law, but also as a resource to any who follows that is also diagnosed with this type of cancer at this age and in this way. Take care of yourselves and anyone else following or reading this - hold your loved ones close and squeeze realy hard. Make it last as long as you can.

    0 Comments
  46. 46
    • matty
    • Experience with Medulloblastoma
    about 4 years ago
    matty's Avatar

    Nausea/Vomiting

    Side Effects

    I believe that this was left over effects from the last round of chemo, last week, and not the beginning of radiation.

    0 Comments