Mick from Australia - Dx 2005 - RIP 06/05/2012

[Olga]

I just checked the published literature about the sutent' side effects and some studies report high incidence of hemorrhage especially if there is a direct vascular invasion by tumors, there were cases of the serious bleeding on this drug. I can not say anything about the relevance and how it could apply to your husband's case - but read this article to get the general idea:
http://www.ncbi.nlm.nih.gov/pubmed/20602135
Have you reported the bleeding to a doctor, you need to speak to someone who is familiar with the sutent's administration.

[Sheree]

Hi Olga yep rang the hospital and well his doctor is away but the one left in charge has tod me there isnt anything they can do but im not happy with that.. His doctor will be back this friday so he will call us then the lady in his office has left hima not a we will be the first ones called... he is still coughing a little bit up and well on friday it will be 2 weeks lucky its only monday ha.... its just a bit scary seeing your husband so sick and week i just dont know what else to do... does this mean the sutent isnt working???

[Olga]

No Sheree, it may be means that Sutent is working - do you know that it damages the blood supply to the tumor so the bleeding might be from them being damaged. But it is a dangerous side effect and if it gets worse, some significant bleeding starts - you need to call an ambulance regardless that they say there is nothing they can do.

[Amanda]

Hello Sheree,
I am sorry that Mick is feeling so badly and yes i am sure this is very hard for you !!!
I wanted to chime in and also say that you ned to call an ambulance if this continues and gets worse...
Has he become this weak since he started to bring up the blood? If so he needs to be seen as soon as possible and be watched.

[Bonni Hess]

Dear Sheree,
I am so sorry that Mick is experiencing some concerning symptoms of coughing up blood. I find it inexcusable that the interim doctor is being uncooperative in addressing your concerns, and that you have been told that there is nothing that can be done and you have to wait until the regular doctor's return on Friday. I agree with Olga and Amanda that if the amount of blood that Mick is coughing up increases significantly, you should insist on Mick being seen as soon as possible by another doctor or at the emergency room of a hospital. Hemmoraging is a known very dangerous and potentially fatal side effect and risk associated with anti-angiogenic tyrosine kinsase inhibitors such as Sutent and Cediranib, and if it occurs it needs to be addressed immediately.
Brittany has coughed up a little blood a couple of times during her two years on Cediranib, but nothing significant. Since it has only happened a few times and it is not chronic, we have assumed that it is probably related to her having a respiratory infection and the irritation from the infection combined with the procedures that she has had done on her lungs causing a small amount of blood in the mucous that she coughs up.
Please keep the Board updated on how Mick is doing and the outcome of any doctor's consultation and exam. Take care dear Sheree and know that my most special thoughts are with Mick and you.
With deepest caring, healing wishes for Mick, and continued Hope,
Bonni

[Sheree]

Hi guys how you all going? Well just keeping you updated bout Mick. Well we found out that the sutant never worked with the resent CT scan it picked up a new tumour in the brain and a few new ones in the lungs and the "old" tumors in lungs some had grown so they stopped the trial.
He is now going to try a different type of chemo which i forget the name of. He will be given a high dosage of it and it will start on thursday. The doc said it has worked on some sarcomas but isnt sure if it will work for Mick but as Mick said he will try anything and everything. The doc did say that if this doesnt work there is nothing else for us to try and yeah... Fingers cross Mick has success with the chemo but will keep you up to date with it all... If anyone knows anything we could try and that is available in australia please let me know so i can take it to the doctor.
Hope you are all doing well and will catch up soon
Sheree and Mick

[Bonni Hess]

Dear Sheree,
Thank you for your thoughtful update. I am so very sorry that the Sutent was unsuccessful in stabilizing the progression of Mick's disease, and that he has now been diagnosed with a new brain met and some new ones in the lungs, in addition to increased growth in his previous lung mets. Unfortunately, based on anecdotal experience results from patients on this Board, it seems that Sutent has not been as successful for most patients as Cediranib and possibly Dasatanib have been in providing some stabilization and tumor shrinkage. It is extremely important that you find out the name of the chemo that Mick is scheduled to begin on Thursday, but I am suspecting that it is possibly Ifosfomide with or without Adriamycin (Doxorubicin) which is a traditional chemo combination used to treat sarcoma, or another one that is frequently used is Gemzar with or without Taxotere. What is the size of the brain met, and has the doctor considered/discussed Gamma Knifing the brain met prior to beginning the chemo to ensure that it doesn't grow too large to successfully respond to Gamma Knife in the heartbreaking event that the scheduled chemo is unsuccessful in stopping the growth of the tumors? I am not personally aware of what other systemic treatments may be available in Australia, but perhaps Olga will have some information for you on this. I Hope that Mick's concerning symptom of coughing up blood has been resolved, and the cause of it diagnosed. Please know that I will be holding Mick and you very close in my heart and my most caring thoughts and sending my very best wishes your way for a very successful response to the new chemo. When your time and situation allow, please update the Board and let us know what chemo Mick will be receiving, and how he responds to it. Take care dear Sheree and give yourself and Mick gentle hugs from me.
Deeply sharing your heartache and concern, and sending my special caring thoughts, healing wishes for Mick, and continued Hope,
Bonni

[Sheree]

Hey just checkin in. Just letting you know the chemo Mick is having is called Methotrexate they said he is getting a high dose of this and also that they dont use it much at the hospital. He so far well ok he had it on thursday and came home friday he didnt have a real good night last night and has been in bed all day today just bout got out for bout 30mins. Im not sure what to expect but will keep u all up to date when i can. Thank u for your kind words again Bonnie and everyone
Sheree xx

[Bonni Hess]

Dear Sheree,
Thank you for your thoughtful update and for the shared information on the name of Mick's new chemo treatment. I am not personally aware of Methotrexate having being used to treat ASPS, nor am I familiar with this drug, but my internet research indicates that it is more commonly used to treat arthritis and rheumatism, but is apparently also sometimes used to treat some advanced cancers. There are some very serious and concerning side effects of Methotrexate which I assume that Mick's oncologist has informed you about, but if you would like more information it is easily found in an internet search of Methotrexate, or I would be glad to send you the links that I read if you will send me your e-mail address in a personal message on this Forum. I Hope that Mick is tolerating the medication better than he was a few days ago when you posted, and I will be holding very tight to Hope that he will have a very successful response to it. Has Mick's oncologist told you whether or not it has been shown that Methotrexate can cross the blood brain barriar? If not, this is something which you need to discuss with the oncologist as soon as possible in view of Mick's recently diagnosed brain mets which will need to be treated with some other form of treatment such as Gamma Knife if the Methotrexate can't cross the blood barriar to shrink/destroy the brain mets. I will be anxiously awaiting your next update, and am sending my most most positive thoughts and healing wishes.
With special hugs, deepest caring, and continued Hope,
Bonni

[Sheree]

Hi guys well to update you MIck has been in hospital since early thursday morning. I had to take him up as he had pain in the right side of his chest and couldnt breathe properly. He is still in hospital they are changing his pain medication and cant come home til its under control. He still cant and hasnt eaten properly well hardly anything since he had the chemo but he is slowly working on it. They thought he might of had a blood clot casue of the pain he is in but it turns out it isnt so they dont really know why he is in so much pain they just said its just probably the lung mets but will see his doctor on monday. i doubt if the doctor will let him continue with the chemo and i kinda think it really isnt worth him being this sick to keep having it. He ended up having a blood transfusionn as his blood were down and he was really anemic. They even thought his kidneys may not of been working properly but the scan said they working but didnt look crash hot so they have flushed him with heaps of fluid. But i think the doctors are stumped they just dont know what to do im guessin. But well it would be hard to treat something you dont know much about.

Well thanks for your reply Bonnie and ill keep you up to date with his progress. My email address is shazzbarrett@hotmail.com if you wanted to send me anything. Thanks again
Sheree

[Olga]

Sheree, sorry to hear that. Methotrexate is a hard drug to take. It is used in a osteosarcoma treatment regimen and I have heard from the parents of the kids that are on it that toxicity is significant. Did they do an X-Ray or a CT scan to Mick? The pain in the side might be a pleural effusion and a lung partially collapsed from the fluid pressing on it. It is not that rare when there is a pleural effusion from the lung mets on a chemotherapy.

[Feng zhou]

Sheree,sorry to here that.
Such a serious chest pain, there may be: a. bleeding caused by Rupture of lung lesions.b. tumor lesions pain caused by strong chemotherapy.
Now you can do 1, B-ultrasound to see if there is blood in the chest and quantified. 2, to see whether heart rate was significantly accelerated.
3, the measured hemoglobin is decreased significantly. 4, chest X ray to see whether the pleural effusion.

[Bonni Hess]

Dear Sheree,
I am so very sorry that Mick is suffering chest pain and associated breathing problems that have resulted in his hospitalization. I have sent you a personal e-mail with the link for some researched information on Methotrexate and some of the very harsh side effects that can be caused by this toxic chemo treatment. Both Olga and Feng zhou have given some very knowledgeable ideas and information about the possible cause of Mick's right side chest pain and breathing difficulties, and the evaluative tests which should be done. Brittany experienced similar severe chest pain and shortness of breath following her lung radiofrequency ablation (RFA) procedure a few years ago which caused a pneumothorax (collapsed lung) and resulted in her being hospitalized for several days while the lung was reinflated and drained of excess fluid. Hopefully the cause of Mick's pain will be determined, treated, and quickly resolved and he will be discharged from the hospital soon. Please give him my best wishes, take care, and keep the Board updated as you are able.
With hugs, deepest caring, healing wishes for Mick, and continued Hope,
Bonni

[Sheree]

Hi guys how you all going. Well just an update we went to the doctors today and well we had scans done before check up and well the chemo he had hasnt help any at all the tumor have grown only sligtly and maybe a few small ones in the lungs. They have told us there is nothing else chemo wise that they can do for him just manage his pain... This is spmething i didnt want to hear but had a feeling it was coming. Well hope you all are keeping well and will pop back in for a chat.
Sheree and Mick xxxx

[Amanda]

Hi you two!
I am sorry that was said to you have you looked in this thread?
http://www.cureasps.org/forum/viewforum.php?f=21
maybe we can all talk about this here and come up with some ideas.. Have oyu been to the USA yet?