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sunnyParticipant
Hi All,
After a brief shrinkage and stability tumors have started growing again.Gem/Tax stopped Now they want me to try pazopanib.Hope I can tolerate it.
SurindersunnyParticipantHi Pan,
My main doctor was away today he will be coming back on 26th and other doctors don’t have a plan.They just want the inflammation to go away.Unfortunately,not many sarcoma specialists here.For now got two week break from chemo.I will update on 26th about next treatment plan whether sarcoma specialist wants to continue with gem/tax or change it .Surinder
sunnyParticipantOne tumour continued to shrink but due to inflamation in lungs gem/tax halted,given some steroids for one week.Currently unaware of next plan,just waiting to see doctor tommorow.
Sunny
sunnyParticipantHi All,
My latest CT scan showed mixed result,on tumour has shrunk slightly while other has grown slightly,small ones are same.Next plan is to have 3 more cycles and have another scan.This stability is coming at a price as day 8th cycle is more tough than day one for few days but unfortunately there is no other option other than to keep fighting.Surinder
sunnyParticipantFeeling nervous about my scan due on end of this month after two cycles of Gem/Tax.Main problem with this chemo is joint and muscle pain but this is the price I am willing to pay if it can give me some good results.
Surinder
sunnyParticipantHi Paul,
Hope you are doing well and thank you for taking time to write. I have completed 1st cycle of gem/tax and thankfully no major issues so for just bit of flue and mouth sores.
My genetic test came other day with surprising result which says Gene:TP53 NM_000546.5,Exon nucleotide: 5 c.503A>T ,Amino acid p.His168Leu,classification:unclassified variant.
and the comment says on the report
“The hetrozygous TP53 variant c.503A>T;p.His168Leu has been previously reported in relevant databases and the literature as somatic variant.however to our knowledge it has not been previously reported as germline variant and in the absence of further evidence remains unclassified”
My Geneticist says it has not caused my cancer but who knows.My hospital is not willing to do more research on this due to lack of funding.
Please let me know what do you think about this result.Surinder
sunnyParticipantFinally seen new oncologist,he prescribed Gem/tax starting 13th march,hopefully this will work and I will tolerate this well.Any advise about how to deal side effects will be highly appreciated.
Surinder
sunnyParticipantHi Paul,
Thank you very much for taking time to write.My latest scans showed two large tumors have grown to 130mm and small multiple lesions have also increased in size,so oncologist have prescribed me pazopanib 200mg.
Look like this cancer is unstoppable.There are no other options are given to me so I am trying to get second opinion.Also I am taking metaformin 500mg twice a day.
I hope new oncologist will be able to give me some more options.Surinder
sunnyParticipantThank you Pan,my short term worry is that I am having night sweats and some symptoms of tuberculosis (may be because of the hormone injection they give me after chemo cycle to boost white blood cells). I am on isoniazid already for TB.
I am ready to undergo another cycle but it just take ten days out of my life and I wanted to be sure that it is giving me some benefit .
Also if I may ask what cancers this medication may induce to people with Li Fraumeni .
Can MRI of liver can give us any information at all.
SurindersunnyParticipantMy oncologist saying to have scan after 3 cycles but I will insist on having it now.If scan shows some shrinkage or any response at all then I think it worth to put up with another cycle . Any suggestions please.
Surinder
sunnyParticipantsomehow handled 2nd round of chemotherapy,not looking forward for third one.
Surinder
sunnyParticipantPaul I wish you all the very best for your new treatment.
Surinder
sunnyParticipantIt’s feeling bit better now after few days,but have to do it all over again and who knows how many times but hoping it will work.Yes I am with my family all these days,have beautiful wife and two young daughters.
Surinder
sunnyParticipantdoxorubicin and Isophosphamide plus all other medication to protect bladder,nausea and so on.Also have to start isonised and pyroxin as preventative measure to stop tuberculosis comeback.
Surinder
sunnyParticipantHorrible experience with chemotherapy.
Surinder
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