Astrocytoma, Anger and Other Health Issues

needsanswers
needsanswers Member Posts: 4
edited March 2014 in Brain Cancer #1
Since 1975, my husband had Type 1 Diabetes. October of 2008, we discovered he needed a transplant and after being on the transplant list for only two weeks, he received a simultaneous kidney/pancreas transplant on Christmas day 2008. Less than six weeks later, during a routine physical his primary care doctor discovered an abnormal involuntary reflex response. He immediately sent him off for an MRI and lumbar jack. At that point the nuerologist found a mass between the T1 and T4 and decided it was probably Transverse Myelitis and told him to come back in February of 2010 for a follow up MRI.

Shortly after my husband began to experience a regular tremor in his legs and hands. Since then he has experienced numbness in both hands at night, the tremor has gotten progressively worse, he has constant back pain and difficulty going from a prone position to a standing position, severe chills without fever and occasional difficulty swallowing. When he went back for his follow up MRI, the nuerologist found the mass was still between the T1 and T4, but that it was now slightly ill defined and decided it was probably a low grade glioma, possibly an astrocytoma. He wants to continue with a "wait and see" course of action with no biopsy.

I have spoken with an oncologist and a brain tumor specialist at allexperts.com and both recommended we push for a biopsy to confirm diagnosis. I have gotten my husband to get a second opinion and push for the biopsy and we are waiting for the films to get them. However, he does not want to pursue any further course of action regardless of the diagnosis as surgery is not an option and chemo would affect his tranplant.

In December, he also had a dangerously low immune system down to a WBC of 1.2, presumably because of the anti-rejection drugs. His nephrologist lowered his dosage, but this month he began showing signs of rejection and the doctor reinstated the higher dosage although his immune system only had a WBC of 5.2. While it was low he also had to take daily Nuepegin shots that increased his bone pain. We have been told that his low immune system will accelerate cancer.

Because of all this he has decided he is dying and has no options. Consequently he is angry and depressed and focusing most of that anger on me, frequently in front of our children. He is also on steroids for the transplant that may be fueling this irrational anger. When I speak to him about it, he claims the problem is me and I need to be on medication for depression. He is quick to anger and frequently pushing for an argument. I've gotten to the point where I don't even argue back and it still goes on for hours. I could understand this behavior if the tumor was in his brain mass, but is this normal behavior for a spinal brain tumor?

I plan on speaking with his doctors about his behavior, but I am at wits end. He is not violent, but frequently threatens me with locking me out, taking everything or other dire consequences. I am living with a stranger who is quick to anger and I am not sure if it is the tumor or depression or a drug reaction. Any thoughts on any of this would help even if it is just knowing that I am not alone. If he is really dying, I don't want him to go through it alone, but I really don't know how much more I can take.

Thanks for listening and sorry this is so long.

Comments

  • KMPonder
    KMPonder Member Posts: 102
    #2
    Very Sorry
    I am just very sorry for all your husband's been through. You've had a long journey and now this. The only advice I can provide, as a wife of a husband with AA brain tumors, is sometimes there can be a personality change on the steroids. I have found that when my husband was on a high dosage of Decadron (necessary to reduce swelling), he actually had a very bad and scary reaction to it, and it completely changed his very docile, caring personality. He's currently on a very lose dosage and is doing very well. I would say he's pretty much back to normal, personality wise.

    I think not arguing back is key. He's obviously not thinking rationally or normally. It's like a person arguing with an Alzheimer's patient to remember. Won't work. If you can reach out to a support group in your community or the help of a professional counselor, it might really be helpful to you. You are under a lot of stress and pressure. Ask your doctor if there is a Social Worker available associated with the hospital or physician's group who can give you some direction of available services.

    I wish you peace.
  • needsanswers
    needsanswers Member Posts: 4
    #3
    KMPonder said:

    Very Sorry
    I am just very sorry for all your husband's been through. You've had a long journey and now this. The only advice I can provide, as a wife of a husband with AA brain tumors, is sometimes there can be a personality change on the steroids. I have found that when my husband was on a high dosage of Decadron (necessary to reduce swelling), he actually had a very bad and scary reaction to it, and it completely changed his very docile, caring personality. He's currently on a very lose dosage and is doing very well. I would say he's pretty much back to normal, personality wise.

    I think not arguing back is key. He's obviously not thinking rationally or normally. It's like a person arguing with an Alzheimer's patient to remember. Won't work. If you can reach out to a support group in your community or the help of a professional counselor, it might really be helpful to you. You are under a lot of stress and pressure. Ask your doctor if there is a Social Worker available associated with the hospital or physician's group who can give you some direction of available services.

    I wish you peace.

    Thank you
    Thank you for your thoughts. I spoke with his doctor and I don't know if they upped his anti-depression meds or if talking to him while he was being rational finally sank in or if he has just passed the anger stage in getting to acceptance, but he has been much better lately. Occasionally he still jumps from a minor problem to a major step, but it seems easier to talk him down. We are setting up the appointment with the neurosurgeon for a biopsy in the next month or so and hopefully we will know more then. I strongly suspect a lot of the problems are the steroids they have him on for the transplants, but they said it was a small doseage so I don't know for sure. Once again, thank you for your thoughts.
  • KMPonder
    KMPonder Member Posts: 102
    #4
    needsanswers said:

    Thank you
    Thank you for your thoughts. I spoke with his doctor and I don't know if they upped his anti-depression meds or if talking to him while he was being rational finally sank in or if he has just passed the anger stage in getting to acceptance, but he has been much better lately. Occasionally he still jumps from a minor problem to a major step, but it seems easier to talk him down. We are setting up the appointment with the neurosurgeon for a biopsy in the next month or so and hopefully we will know more then. I strongly suspect a lot of the problems are the steroids they have him on for the transplants, but they said it was a small doseage so I don't know for sure. Once again, thank you for your thoughts.

    I am glad things have
    I am glad things have improved. I wish you all the best with the biopsy results. Please keep us posted. There's a lot of support here. We need it! :)
  • danielgharper
    danielgharper Member Posts: 13
    #5
    needsanswers said:

    Thank you
    Thank you for your thoughts. I spoke with his doctor and I don't know if they upped his anti-depression meds or if talking to him while he was being rational finally sank in or if he has just passed the anger stage in getting to acceptance, but he has been much better lately. Occasionally he still jumps from a minor problem to a major step, but it seems easier to talk him down. We are setting up the appointment with the neurosurgeon for a biopsy in the next month or so and hopefully we will know more then. I strongly suspect a lot of the problems are the steroids they have him on for the transplants, but they said it was a small doseage so I don't know for sure. Once again, thank you for your thoughts.

    Needsanswers, I had some personaly swings after my GBM came back
    I don't know if this is helpful at all, but I acted "weird" for a few days during the last few months. My wife said I was a nut, and I can totally see how she is right. Don't know if it was from the meds I was on, or just the actual tumor causing my personality to change for a few days, but I was super hyper. I talked super fast, I couldn't sleep, and I was just too excited in general. I think it might have been caused by the steroids I was taking. Or at least I KNOW the insomnia was caused by the steroids. My mom recently started on steroids to try and get rid of this swelling and possibly GERD she has in her throat, and the day she staretd them she slept "worse than she had ever slept" in her life.
  • needsanswers
    needsanswers Member Posts: 4
    #6
    danielgharper said:

    Needsanswers, I had some personaly swings after my GBM came back
    I don't know if this is helpful at all, but I acted "weird" for a few days during the last few months. My wife said I was a nut, and I can totally see how she is right. Don't know if it was from the meds I was on, or just the actual tumor causing my personality to change for a few days, but I was super hyper. I talked super fast, I couldn't sleep, and I was just too excited in general. I think it might have been caused by the steroids I was taking. Or at least I KNOW the insomnia was caused by the steroids. My mom recently started on steroids to try and get rid of this swelling and possibly GERD she has in her throat, and the day she staretd them she slept "worse than she had ever slept" in her life.

    Thanks Daniel. The doctors
    Thanks Daniel. The doctors are still refusing to do a biopsy because they fear it will cause paralysis and they didn't do a brain scan this year although they say the spinal tumor is growing and is an astrocytoma. However, I fear it has disseminated into his brain because his emotions are still so erratic. The last brain scan they ran was in Feb. 2009. From what I've read, a low immune system can certainly contribute to dissemination. I am pushing for a brain scan now.
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #7
    needsanswers said:

    Thanks Daniel. The doctors
    Thanks Daniel. The doctors are still refusing to do a biopsy because they fear it will cause paralysis and they didn't do a brain scan this year although they say the spinal tumor is growing and is an astrocytoma. However, I fear it has disseminated into his brain because his emotions are still so erratic. The last brain scan they ran was in Feb. 2009. From what I've read, a low immune system can certainly contribute to dissemination. I am pushing for a brain scan now.

    Hello NeedAnswers, I am both
    Hello NeedAnswers, I am both a 2 time organ transplant recipient and 2 time time cancer survivor. I was a type 1 diabetic since Sept 1977 when I was 20 and wanted to pursue a pancreas transplant to become insulin independent. My last successful pancreas transplant was June 27 2004 at Univ of San Francisco Medical Center. I also was diagnosed twice in 2008 with late stage cancer (not brain) and was treated with surgery and chemotherapy while I remained on immunosuppressant medications for my pancreas transplant throughout the treatment and post treatment. It’s a very challenging balancing act to keep ones immune system elevated enough to continue with chemo/rad treatments for cancer, to avoid infections, and to keep the transplanted organs (pancreas,kidney)functioning without sustaining damage or rejection incidents.

    1st priority is to diagnose brain with MRI to see if there are any lesions. The decision to do a biopsy of lesions/tumors in brain depend on the location, the type, the size, and determine the risk on causing damage vs the benefits. I understand your spouse has spinal tumor which is growing and is an astrocytoma and there may some question if it has met to brain thru the fluid in spinal column.

    You mentioned his WBC was only 5.2 last in your post which was several months ago. A WBC of 5.2 is not considered low and is well within normal range. I remained on my antirejection meds without any interruptions during cancer treatments. Im on immuno meds which include prograf, cellcept and rapamune and all the levels of these 3 drugs were followed on a monthly basis along with all my other blood work. My native kidneys have held up very well and have been working without any issues as I never considered a kidney transplant. I did lower my immuno meds and the dose prior to chemo treatments which was in Oct 2008 and I completed chemo treatments on Dec 31 2008 when I was told I was in remission and remain that way today. I was able to get thru treatment for cancer without any infections and kept my transplanted pancreas and had cancer go into remission. There have been no long term complications except my cornea of both eyes which were affected by chemo months after I finished treatment. I did not require radiation for treatment.

    I had a split decision from my med team on whether I should go off the immuno meds once I started chemo treatments or remain on. My transplant team advised I get off but my med oncologist said I can stay on current meds and dose. I decided to stay on immuno meds but lower the dose. I was lucky and also had the advice of Dr Lawrence Einhorn at Univ of Indiana, a well respected med oncologist, who told my med onc that I would be ok to remain on my immuno meds for my transplanted pancreas after the cancer treatments were completed as he didnt think a recurrence was likely even though my other DR's leaned towards having me stop antirejection meds and thus lose my pancreas from rejection.

    If there is anything I can do to help you and your spouse "NeedsAnswers" try and navigate your way thru to treating the spinal tumor (astrocytoma), keeping the transplanted kidney and pancreas, or helping your spouse with his depression, or bringing his spirit up, please let me know. You can reach me at my personal email at shzabel@hotmail.com or use CSN email or post your comments here on CSN brain cancer board. You can also post on Caregiver and Emotional topic boards in CSN as other members will be more than happy supporting you too.

    HeartofSoul Steve
  • needsanswers
    needsanswers Member Posts: 4
    #8
    HeartofSoul said:

    Hello NeedAnswers, I am both
    Hello NeedAnswers, I am both a 2 time organ transplant recipient and 2 time time cancer survivor. I was a type 1 diabetic since Sept 1977 when I was 20 and wanted to pursue a pancreas transplant to become insulin independent. My last successful pancreas transplant was June 27 2004 at Univ of San Francisco Medical Center. I also was diagnosed twice in 2008 with late stage cancer (not brain) and was treated with surgery and chemotherapy while I remained on immunosuppressant medications for my pancreas transplant throughout the treatment and post treatment. It’s a very challenging balancing act to keep ones immune system elevated enough to continue with chemo/rad treatments for cancer, to avoid infections, and to keep the transplanted organs (pancreas,kidney)functioning without sustaining damage or rejection incidents.

    1st priority is to diagnose brain with MRI to see if there are any lesions. The decision to do a biopsy of lesions/tumors in brain depend on the location, the type, the size, and determine the risk on causing damage vs the benefits. I understand your spouse has spinal tumor which is growing and is an astrocytoma and there may some question if it has met to brain thru the fluid in spinal column.

    You mentioned his WBC was only 5.2 last in your post which was several months ago. A WBC of 5.2 is not considered low and is well within normal range. I remained on my antirejection meds without any interruptions during cancer treatments. Im on immuno meds which include prograf, cellcept and rapamune and all the levels of these 3 drugs were followed on a monthly basis along with all my other blood work. My native kidneys have held up very well and have been working without any issues as I never considered a kidney transplant. I did lower my immuno meds and the dose prior to chemo treatments which was in Oct 2008 and I completed chemo treatments on Dec 31 2008 when I was told I was in remission and remain that way today. I was able to get thru treatment for cancer without any infections and kept my transplanted pancreas and had cancer go into remission. There have been no long term complications except my cornea of both eyes which were affected by chemo months after I finished treatment. I did not require radiation for treatment.

    I had a split decision from my med team on whether I should go off the immuno meds once I started chemo treatments or remain on. My transplant team advised I get off but my med oncologist said I can stay on current meds and dose. I decided to stay on immuno meds but lower the dose. I was lucky and also had the advice of Dr Lawrence Einhorn at Univ of Indiana, a well respected med oncologist, who told my med onc that I would be ok to remain on my immuno meds for my transplanted pancreas after the cancer treatments were completed as he didnt think a recurrence was likely even though my other DR's leaned towards having me stop antirejection meds and thus lose my pancreas from rejection.

    If there is anything I can do to help you and your spouse "NeedsAnswers" try and navigate your way thru to treating the spinal tumor (astrocytoma), keeping the transplanted kidney and pancreas, or helping your spouse with his depression, or bringing his spirit up, please let me know. You can reach me at my personal email at shzabel@hotmail.com or use CSN email or post your comments here on CSN brain cancer board. You can also post on Caregiver and Emotional topic boards in CSN as other members will be more than happy supporting you too.

    HeartofSoul Steve

    Thank you so much Steve! It
    Thank you so much Steve! It is good to hear from someone who has actually had these problems of balancing the transplants with cancer. My husbands WBC was down to 1.2 in December, but is back up to the normal ranges again. We are consulting with a new neurologist on Monday and should hopefully have more answers soon on what is going on. At the moment he has high Prograf levels (11) and that may be causing some of the symptoms including his hand tremors and the two seizures he's had, but we will feel better once we've talked to the new doctor. It just really seems that the doctor's we've talked to, while all very sympathetic, aren't coordinating efforts and supplying any answers. Hopefully that will change now.
  • MrsPlate
    MrsPlate Member Posts: 19
    #9
    sounds familiar
    My husband was DX with GBM after he started to loose feeling and controll of his left leg, severe back pain and convulsions in his legs. It took a couple of trips to our general practicioner to get the rec to go to the neurologist, but as soon as they saw the strange reflex (can't remember what it's called) that showed compression of the spinal cord, they got moving fast. MRI showed the tumor in T3-5 area. After a partial resection the lab results found it to be a GBM- typically a brain tumor, only it was/is ONLY in his spine so far.

    My advice is to NOT wait and see- I don't know anything about transplant and the complications that can cause, but I wouldn't want the thing to cause permenant damage to his spine while you wait to see what it does. I know that was a major concern with my husband.

    As far as anger, yup- we've got that. My husband lost his dang mind one day and got violent with me (I was about 30 weeks pregnant at the time) and my son. I think it was a combo of not dealing well with his prognosis as well as the decadron he is on...he still has issues with keeping his temper in check, but he's on Cymbalta that seems to be helping with the violent outbursts. He's also seeing a therapist, but I'm not sure how much she's doing for us/him... he's not "into" therapists, but is doing it because I insisted.

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