My brother has Soft Part Tissue Sarcoma leg, lungs & brain.

My husband also has Sarcoma (MFH) that has spread from his leg to his lungs and brain.   Do you know which type of Sarcoma your brother has?

I have been trying to get my husband into a trial for Sutent, here in the US, but have been told that he is ineligible because of the brain mets.  I was also told that the side effects of Sutent are pretty severe, but it sounds like your brother is tolerating them fairly well.   It is always nice to hear of someone who is feeling good through their treatment.

I am so glad to hear that your brother is doing well on it....I hope that he continues to do so.  Just remember, each day that it continues to work brings him one day closer to the discovery of a better drug or maybe even a cure! 

Best wishes to you and your brother and please keep posting on his progress.   

Hi Brenda,

My brother was diagnosed with "alveolar soft part sarcoma". 

He got good news today the tumour in his brain has reduced, some of the mets on his lungs have also reduced, there is no change to his leg but overall they are very happy with him and we are thrilled.  He has no major side effects, just very tired and very hot in himself.

 When he had his biopsy on his leg they removed a sample of the tumour, he was left with a wound that kept oozing and just didn't heal, now it has healed, which is also very good.

When I first started looking at this site I read up on sutent and I read many stories good and bad and thankfully so far his story is a good one.  I pray every day for good news and I thank God that today we got some and hopefully we will many more years of good news.

I hope that you too get the good news you deserve and I wish you and your husband the very best.

I will keep writing on his progress and please keep me updated on your husbands.

Take care,  Niamh.

 

Hi Niamh,

 Thank you so much for getting back to me.  I am so happy to hear that your brother is doing well.   Keep up the good work!

 My husband and I met with the dr. last week.  He suggested that we try a different chemotherapy drug (Temodar) that has worked on the brain, however, it rarely does with Sarcoma.   The dr. said that he may consider Sutent on a "compassionate use" basis if the chemotherapy drug does not work.

Please do keep in touch and let me know about your brother's progress....I wish him the best of luck.

 God Bless,

 Brenda

I will be praying for your brother's scans to be good as well! May the new chemo drug be a MIRACLE! -Angie

My brother thank God is doing very well at the minute, he is on 37.5mg of sutent (one and a half tablets) once a day. He is due to have another scan end of November early December. The only side effects he gets is over whelming tiredness and a intolerance to heat, he hates the heat, loves the cold air on him. The tumour on his leg has been giving him some problems lately, it is really hot when you touch it compared to the rest of his body, it was causing him some pain too but he went on an antibiotic and it helped, the doctor thought he had an infection. Overall Colm thinks and feels that something is happening, ie the treatment is working and I keep praying that it is.

I continue to hope your brother's scan show good news!! Keep us posted. I am praying. -Angie

My brother had a stroke a week today.  He had a scan on Wednesday, met his oncologist on Friday and all was pretty well, no real change to his tumors, or so we thought, we have since learned that there may be one or two more on his lungs.  He was feeling so well for the last month or so, enjoying life and really feeling that the treatment was working.  But on the Saturday he had a major bleed in the brain, it was totally out of the blue and it was very scary for him and us. Thankfully he is making a recovery, he is paralysed on his left side, but he is gradually getting his feeling back and his speech is alot better. 

We were told that the sutent caused the bleed. It has been a very week and hopefully it will get better and with the help of  God he will continue to fight this disease and now this stroke.

Dear Nevei,

 I will be praying for your brother that he recovers completely from the stroke and that his body continues to respond to medication.

 Our 10 year old daughter has alveolar soft part sarcoma involving her female tract. We started Sutent in mid-July. Because part of the tumor can be felt, we have seen that it periodically gets warm and swells and then recedes when it seems Sutent is having its effect. I will pray that some of your brother's stroke symptoms are due to this effect and that he may be able to recover completely from his paralysis.

 In our daughter's case, there's a possibility it may be confined to her female tract, so surgeons want to resect it in January. She will have completed 4 cycles of Sutent by that time and we are praying that it may shrink to make the resection easier.

 There are two other resources for alveolar soft part sarcoma that may be helpful to you: cureasps.org and www.alveolarspsarcoma.net

Fernette 

 

 

Sorry for not logging on in ages but it has been a long hard month. As per my last message my brother had a stroke in early December.  thankfully he has his speech back and is in terrific form.  He has had 2 bllod transfusions with 4 units of blood in total. His treatment has been stopped indefinitely.  Unfortunatley he is paralyed on the left and presently little feelings are there, you can touch his toes and he can feel it.  Hopefully it can only get better.  He is such a brave person, he is now aiming for the Special Olympics, he is a fighter and he keeps us fighting with him.

 I hope all is well with you.

Niamh.

 

Hi.  I am sorry I didn't get back sooner.  I have not been checking my email as my husband passed away on January 1st.  He kept fighting until the very end though and I am so proud of his bravery. 

 I know that some day they are going to find a cure for this terrible, terrible disease, so please tell your brother to keep fighting and to not give up.  I really wish the best for  him and will be praying for him.

 Please keep in touch.