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Rhabdoid Cancer Discussion A forum to discuss anything related to atypical teratoid rhabdoid tumors (AT/RT, AT/RhT), rhabdoid tumors of the kidney (RTK), and malignant rhabdoid tumors (MRT)

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  #1  
Old 12-20-2015, 02:20 PM
martyn martyn is offline
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Default Uncontrolled Vomiting PLEASE HELP!!

Hi

Please bear with me this is a long story but i have a few questions at the bottom of the post !!!


My Son Eddie was diagnosed with an ATRT in his posteria fossa at the end of July this year. After a successful surgery to remove the tumour we embarked on the European protocol which is 6 courses of chemotherapy including Doxorubicin, ifosamide, carboplatin, etoposide (ICE), vincristine, Cyclophosphamide and Actinomycin-D. Followed by High Dose Chemotherapy.
Eddie was also fitted with an omayer reservoir to allow intrathecal chemotherapy.
The chemotherapy was planned over 6 doses at 2 weekly intervals.

Eddie was 7 months old at diagnosis so was un able to have radio therapy.

The journey for want of a better word has been hell. Eddie contracted meningitis of the CSF after surgery and a was delayed for chemotherapy. He was further delayed whilst his stem cells were harvested. After the 3rd round of chemo therapy we needed to do something about his omayer reservoir which had never quite healed on his head and the decision was made to insert a external drain as his brain fluid was collecting on the outside of his brain in the subdural space.
A second bout of meningitis followed due to the surgery ultimately leading to the omayer being removed and a VP Shunt was fitted as Eddie could no longer manage his own drainage.

After a 5 week delay we had a mid course scan that revealed that the tumour has progressed and also revealed 2 more suspect spots on his spine 1 of which was inaccessible to surgery. Eddies CSF was also tested positive for tumour cells.

The plan was to finish the 6 courses and assess the situation before the high dose.

After 3 on time doses of chemotherapy we received the devastating news the the tumour in his head had grown again (although the spots on his spine remained static). As a result chemotherapy was cancelled and we are left with little other option.

We are planning on taking him to mainland Europe for Proton Theraphy next but in the mean time we have a question if any one can help:


Initially after Eddies surgery he was breast feeding fine. Then he suffered for 1 month with meningitis of the CSF. Since then we have struggle to feed him as he constantly vomits his milk. He is fead via NG tube through his nose but we are only able to keep abut half of what he requires in him. As a result it is 4 days until Christams and Eddie is hooked up to TPN which feeds him through his Hickman line.However we can't take him home.
The ENT specialist looked at Eddie and it appears that his voice box has been damaged either by the tumour or surgery since then he has suffered from constant secretions which appear to make him vomit randomly and regularly. A secondary effect is that he often brings his milk up with the mucous.

We use ondansatron and cyclazine as anti sicknesses but these appear to be of no use as they make no difference.

Has any one come accross the same issue we are getting desperate and just want to take our little boy home. Everyone is at a loss in the hospital.

Thanks

Martyn
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Old 12-20-2015, 03:05 PM
martyn martyn is offline
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Location: Sheffield, England, UK
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Default

One more thing that I forgot to mention is that Eddie regularly picks thing up (anything he can get his hands on) and immediately puts it in his mouth with out any problem.

If however we were to try to give him any kind of solid food no matter how small he immediately vomits.
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Old 01-01-2016, 11:22 PM
C's_Family C's_Family is offline
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Default

Been a long time, just happened to check and see this after receiving our annual email from CBTRF. I haven't been in the thick of it for many years now, but we had a similar story (ours started at 6 month with our son) and we also always struggled with the vomiting. We ended up on TPN for many months which we were able to do at home here in the US through a pharmacy (we had a few options to pick from). He had a brouviac port I believe then, and comfort nursing on demand but it really was the TPN that sustained him until the port no longer worked. The only anti nausea drug that ever seemed to *maybe* work was Kytril (aka Granisol, Granisetron), maybe the dexameth helped a little at the end, but really I'm not sure anything ever really worked.

I'm so very sorry. I always wish we were the last ones to go through this and I hate to see that it still is happening to babies around the world, I truly can't imagine anything worse. Love and hugs to you all. -Jessica K.-
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Old 01-04-2016, 10:00 AM
martyn martyn is offline
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Thanks very much Jessica for the reply, It looks like we've ended up down the same road that you did. Were on TPN permanently and tied to the hospital as a result. (we don't appear to be able to go home in the UK). We did try Dexamethasone and had some short term success however despite getting more than the required calories down Eddie he still continued to lose weight. I guess the root cause of the problem lies deeper.

Regards

Martyn
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