Pleomorphic xanthoastrocytoma tumor (Pxa): help

Posted by lmp1 @lmp1, Jun 27, 2017

My daughter was diagnosed with a Pleomorphic xanthoastrocytoma tumor in February. She had surgery to remove it. They thought they got it all but wasn’t sure. She is 25 years old and has a 4 year old and a 1 year old. Her last app and MRI was June 21 and it seems that it is growing back. I know this a rare tumor and I’m having a hard time finding info. Any help someone has would be appreciated. Would love to hear from other survivors of this rare tumor. Thanks,
A very worried mom!

To lose a child, I can't imagine. So very sorry for your loss:(

Liked by daniellemarie

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@daniellemarie

@ ejacobs16 hello I am so sorry your best friends daughter and the family have to go through this horrible nightmare. My daughter Danica has just passed January 28, 2019 age 10 years old from PXA grade 3. She had 14.5 hour surgery the first attempt to remove and they could only get 97% out due to it being on a blood vessel. Then she did radiation for 5 weeks and it still grew back. Then she was put on tafinlar chemo for 9 months and it shrunk to nothing but her next mri which she had every three months came back that it had grown back. We had to have a meeting with her team from Oakland children’s hospital to see what her next options were and the plan was a biopsy and try to remove what little they could since it was growing from vessel area and to make sure it had not changed. Then they would start her on two other chemos together. So October of 2018 Danica has her surgery set and days before that she had several quick scans and mri’s because she was getting nauseous like she had in the start of it all. Well scans showed bad news and it had doubled in size and she ended up having a 10.5 hour surgery and her removal was 75% we went home grateful she was alive and had no complications from another long brain surgery. But inside we New our options were down to this last treatment that were the two chemos. Sadly to say Danica’s rumor was out of control. We were sent home on hospice from a check up after being on the treatment for 2 1/2 months and nothing changed with medications. Our world crumbled and Danica’s pain at home was not able to be controlled we ended up back in Oakland children’s hospital for her last 8 days of her life and she passed. We caught with her for two years and it has torn me and my family up. I pray for your friends child and the family for strength love and a miracle with this kind of cancer because it is very rare and has no cure yet. Breaks my heart that our children have to go through this. 💔😭🙏🏻

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@daniellemarie thank you so much for sharing about the passing of you dear angel, Danica. It has been a long, yet much too short, journey. You're so right. No child – or family – should have to go through this.
I invite you to continue to share as your journey continues now and you navigate your path through loss and grief. We recently opened a new group dedicated to accompanying people so that no one has to do this alone. I hope you'll post here:
– Loss & Grief https://connect.mayoclinic.org/group/loss-grief/

Liked by daniellemarie

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@daniellemarie

@lmp71 hello I am so sorry I have not been on in a while. My world has been shattered and I am trying to cope. January 28,2019 I lost my daughter Danica this evil pxa tumor. Danica ran out of options and what medicines that have been known to help shrink these kind of tumors. Hers just got overly aggressive and took over. She had tumor all over by the time she was sent home on hospice and having swelling nausea and losing right side functioning since her tumor was on left and front. She was sent home from Oakland children’s hospital on hospice on a Friday which hospice was not coming till that following Monday so she had been sent home with a couple strong hard core pain medications that I had to give her since her headaches became consistent and very painful. By Sunday morning at 3am I had to make the decision to load her up with my other children husband and my good friend and her daughter that Danica has over for sleep over even in the pain and condition she was in and I was letting her do and have what ever she wanted knowing her days were numbered. We got to Oakland and they admitted her and started her on pain meds and asked what we wanted as in her being home after they get pain controlled to pass there or hospital and we picked hospital because of so many reason. First it’s where she had her care, they can control her pain and her comfort and team would be there with us. Danica fought 8 long days till she passed at 2:49am on January 28, 2019. It was the worse and long 7hrs of my life that I had to watch and go through due to her labor breathing and sounds and being so powerless and hit with reality that my baby was leaving me forever. Today I am still not emotionally ok. My 7 year old who’s been here in home and shared a room with her is having a hell of a time and he is in grieving therapy. My 19 year has checked out and became completely detached as well as I have. I have to drag my self and push to get through each day for my kids and it has taken its toll. My life with out her is hell and I can’t believe she is gone.

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I’m very sorry for your loss, Danielle. I hope you and your family will find some sort of peace soon. I, myself, have so much anxiety and fear from watching my wife suffer not knowing what the future holds. I really want to thank you for sharing with us as we are all going through this horrific journey with our loved ones. If you ever need to talk we are here for you.

Liked by daniellemarie

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@kodabear

I’m very sorry for your loss, Danielle. I hope you and your family will find some sort of peace soon. I, myself, have so much anxiety and fear from watching my wife suffer not knowing what the future holds. I really want to thank you for sharing with us as we are all going through this horrific journey with our loved ones. If you ever need to talk we are here for you.

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@kodabear thank you very much. The unknown and powerlessness is so hard. Lots of prayers and positive thoughts. As for me I’m completely lost and detached as well as my other children. Our family is so broken. I just want this mother’s days over with.

Liked by kodabear

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@colleenyoung

@daniellemarie thank you so much for sharing about the passing of you dear angel, Danica. It has been a long, yet much too short, journey. You're so right. No child – or family – should have to go through this.
I invite you to continue to share as your journey continues now and you navigate your path through loss and grief. We recently opened a new group dedicated to accompanying people so that no one has to do this alone. I hope you'll post here:
– Loss & Grief https://connect.mayoclinic.org/group/loss-grief/

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@colleenyoung thank you for reaching out to me. Yes it has been a long But yet very short journey.. she was my rock, strength and happiness. She was my special one and our bond and relationship was something fierce. I feel like I didn’t do my job as a mother and protect her or save her from this nasty cancer. I still can’t believe that she’s gone. I can’t see my life with out her. I just want to be with her… I cry to her and ask for her strength to get me through this. It’s a nightmare..

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@daniellemarie

@colleenyoung thank you for reaching out to me. Yes it has been a long But yet very short journey.. she was my rock, strength and happiness. She was my special one and our bond and relationship was something fierce. I feel like I didn’t do my job as a mother and protect her or save her from this nasty cancer. I still can’t believe that she’s gone. I can’t see my life with out her. I just want to be with her… I cry to her and ask for her strength to get me through this. It’s a nightmare..

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Danielle, pasé por la pérdida de mi hijo hace ahora tres años. Comprendo perfectamente lo que dices. Nosotros estuvimos en un grupo de duelo y fue de gran ayuda. Yo también me sentí muy culpable de no haber podido hacer que mi hijo sobreviviera. Con el tiempo me he ido liberando de la culpa y ahora me queda un hermoso recuerdo de mi hijo, de lo vivido, siempre lo siento cerca, aunque a veces siento punzadas de dolor. Deja que te llegue su fuerza y que te acompañe en este camino que recorrerás. Un abrazo.
Danielle, I went through the loss of my son three years ago now. I understand perfectly what you say. We were in a grieving group and it was very helpful. I also felt very guilty about not being able to make my son survive. Over time I have been free of guilt and now I have a beautiful memory of my son, of what I have lived, I always feel close, although sometimes I feel pangs of pain. Let your strength reach you and accompany you on this path you will travel. A hug.

Liked by daniellemarie

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@javierhortal

Danielle, pasé por la pérdida de mi hijo hace ahora tres años. Comprendo perfectamente lo que dices. Nosotros estuvimos en un grupo de duelo y fue de gran ayuda. Yo también me sentí muy culpable de no haber podido hacer que mi hijo sobreviviera. Con el tiempo me he ido liberando de la culpa y ahora me queda un hermoso recuerdo de mi hijo, de lo vivido, siempre lo siento cerca, aunque a veces siento punzadas de dolor. Deja que te llegue su fuerza y que te acompañe en este camino que recorrerás. Un abrazo.
Danielle, I went through the loss of my son three years ago now. I understand perfectly what you say. We were in a grieving group and it was very helpful. I also felt very guilty about not being able to make my son survive. Over time I have been free of guilt and now I have a beautiful memory of my son, of what I have lived, I always feel close, although sometimes I feel pangs of pain. Let your strength reach you and accompany you on this path you will travel. A hug.

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@javierhortal I am so sorry for your loss 💔🙏🏻 This is the hardest thing I have ever had to deal with and the worse pain ever. I miss her so much. She’s our “Princess Warrior” of Sonoma county in California. Thank you for positive words and reaching out to me. We have a Team Danica page that has shown her journey and I continue to update it when we do things for her or honor her. Please go follow if you would like. Thank you again

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@csaylor

This will be the first time he will be on chemo, I am not sure how long it will take, the doctor office tells me about 3 to 4 weeks.He recently had an MRI and it came out clear. I will keep you updated.

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@csaylor
Hello how is your little one doing?

Liked by Lisa Lucier

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Hi, members in this discussion on PXA,

As anxieties increase and social interaction is limited with the COVID-19 virus, Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

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@audrapopp

First, thank you Colleen for connecting us… because it is such a rare tumor it is difficult, if ever to connect with others and I am happy to be an advocate, support and here for any questions you or your daughter may have. First of all~ Complete surgical resection is currently the best treatment option for this tumor type, that being said~ your best defense is truly “the best neurosurgeon” you can find! If I understand correctly she has not had radiation treatment or chemotherapy of any kind yet. I’m saddened they haven’t connected you with a Neuro-Oncologist yet… sorry, but that alone makes me question her neurosurgeon. Second, what is the pathology report showing from her first tumor? Is it Anaplastic (Grade 3?) I can only assume it is since it has recurred so quickly. Have they tested for the BRAF V600e mutation? Many PXA’s are showing it to be positive for this mutation and there have been a few reports of using targeted mutation therapy with BRAF inhibitors that are shrinking the tumors (Tafinlar & Mekinist drug combination or Veberafinib alone.) I have a lot more info on these if you need and have recently been on them. The BRAF mutation has been found in melanoma, lung and colon cancers and these drugs have been FDA approved for Melanoma so far. Unfortunately, since PXA is so rare my insurance company would not approve the drugs for me, even with an appeal…but luckily the pharmaceutical supplier Novartis granted me a one year supply of the drugs thru the Novartis patient assistance Foundation. If your daughter goes the drug route her MD needs to get applications started ASAP. My insurance process (application, denial & appeal) took well over a quite agonizing month! If she doesn’t do surgery she may want to consider a biopsy to see if her pathology has changed since her surgery 4 months ago. I can’t emphasize enough that she needs to be seen sooner than later by a well qualified Neuro-oncologist to get the best treatment advice going forward. It may mean getting on a plane..but trust me, it will be worth it. Mayo has an easy referral request process. My Neuro-oncologist sees patients both in Rochester, MN and the Mayo campus in Jacksonville, FL. I hope this helps and can continue the conversation. I’m sure you have lots of questions and I’m happy to answer.
With HOPE all things are possible, Audra

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Hi Audra, hope you still follow this forum. My 23 year old son just had a PXA tumor removed. Waiting to get the moleculars back, so limited information at the moment. Would love to hear your experience and any advice or resources you would be willing to share. Thank you!

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@jakejta

Hi Audra, hope you still follow this forum. My 23 year old son just had a PXA tumor removed. Waiting to get the moleculars back, so limited information at the moment. Would love to hear your experience and any advice or resources you would be willing to share. Thank you!

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jakejta, I have some experience similar to Audra, fingers crossed for your son's diagnosis. My daughter has had a Grade 3 PXA for 6 years and is in her 20s. She has had multiple operations, radio, chemo, targeted therapy and re-purposed drugs and is still with us albeit with relatively minor disability. When you know the situation I would be happy to share our experience if that would help. Best wishes, David.

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@jakejta

Hi Audra, hope you still follow this forum. My 23 year old son just had a PXA tumor removed. Waiting to get the moleculars back, so limited information at the moment. Would love to hear your experience and any advice or resources you would be willing to share. Thank you!

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Hi @jakejta, like @dgruk, I'd like to get an update about your son once you get the test results back after surgery. When do you expect to get them? How is your son doing post surgery?

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Hi All, it’s been a while since I posted… mid 2018. My wife is doing okay after many complications, but she gets occasional numbness and proprioception issues on her right side along with headaches occasionally. Does anyone experience this too? David, your daughter? Luckily it goes away the next day. It scares her each time.

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kodabear, regarding headaches, we have found that they come and go. Other than when recovering from surgery (which for my daughter was another matter) we have found that headaches come and go for periods of a day to a few weeks here and there. Whilst one doesn't like to take too many pain killers, we have learned that this what they are there for, and nursing staff are usually most helpful in advising about their use. Regarding mobility, 3 months ago my daughter started getting reduced mobility in her L side. This was almost certainly due to the re-growth of the tumour which is in and around her Right Temporal Lobe (which controls the L side of the body). 6 weeks ago this had worsened to a relatively bad limp in her L leg (she could only walk say 200m) and her L arm had lost almost all mobility, pretty much just hanging. Perhaps different to your situation though was that she had/has full sensation, it's just that she was unable to move her L limbs normally. She then started some sessions, over video, with a physio who specialises in neurological impairment and this has worked well. If she had 100% mobility in her L side 3 months ago I would say this went down to about 20%, but it is now back up to about 50% and still improving week on week. It sounds like your situation is different (re the loss of sensation) but even so I would still recommend speaking to a neurological consultant or even to a neurological physio direct – I understand this is a common sort of problem they deal with. I hope that helps. All the best with it, David.

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@dgruk

kodabear, regarding headaches, we have found that they come and go. Other than when recovering from surgery (which for my daughter was another matter) we have found that headaches come and go for periods of a day to a few weeks here and there. Whilst one doesn't like to take too many pain killers, we have learned that this what they are there for, and nursing staff are usually most helpful in advising about their use. Regarding mobility, 3 months ago my daughter started getting reduced mobility in her L side. This was almost certainly due to the re-growth of the tumour which is in and around her Right Temporal Lobe (which controls the L side of the body). 6 weeks ago this had worsened to a relatively bad limp in her L leg (she could only walk say 200m) and her L arm had lost almost all mobility, pretty much just hanging. Perhaps different to your situation though was that she had/has full sensation, it's just that she was unable to move her L limbs normally. She then started some sessions, over video, with a physio who specialises in neurological impairment and this has worked well. If she had 100% mobility in her L side 3 months ago I would say this went down to about 20%, but it is now back up to about 50% and still improving week on week. It sounds like your situation is different (re the loss of sensation) but even so I would still recommend speaking to a neurological consultant or even to a neurological physio direct – I understand this is a common sort of problem they deal with. I hope that helps. All the best with it, David.

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Thanks David! I appreciate your sharing your daughter’s experiences. It’s makes me worry a little less with her occasional headaches. Her last one which was a couple of days ago was the worst one with vomiting and a sensitive scalp, but it passed. She used Tylenol and it helped enough. Opposite of your daughter’s situation, My wife’s tumor was in her left temporal Lobe. She also uses some use of the R side limbs as well but can still walk. Her hand loses maybe 30-40% Functionality. Question. Did your daughter have any problems with her skull cap from the surgeries? Infections, etc.

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