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

[Bonni Hess]

Dear Sheree,
I strongly agree with Karen's excellent advice regarding the importance of beginning some kind of treatment as soon as possible. I think that it is very important to be proactive, rather than to just wait three months for the results of your husband's next scans, especially since some ASPS mets can grow quite rapidly. It is very encouraging that Karen's radiation treatment to the tumor on her trachea appears to have been successful in shrinking the tumor and preventing any further growth. This is important information to share with your husband's oncologist so that some kind of treatment plan can be initiated sooner rather than later. Please take care Sheree and keep us updated as your time and the situation allow.
With special caring thoughts and continued Hope,
Bonni

[cricri]

Sheree Hello,
I do not understand why the doctors do not want to make the dish to the lungs. I had lung dishes, the largest measuring 1 cm, and they operated to see if it was the cancer that had returned. It is important to stress and to convince doctors. It's the life for your husband who depends not theirs.

I wish you luck,

Cricri

[Sheree]

HI Hope you all had a great xmas and so far having a great new year. I just thought i would let you know that Mick has another check up on the 17th jan so i will let you all know how he is. We have notice he is coughing more and also getting tired alot more i am just hopeing he is working to much and thats why he is tired more offend. Well i will keep in touch. Thanks again

[Olga]

Dear Sheree - good luck with your husbands scan and I suggest you to use this occasion that you'll see the oncologist and rise the question about the resection. Print out the last article from MSK about the advantages in survival that surgery provides for ASPS patients (it is here
http://cureasps.org/library/6_ASPS_MSKCC_06.pdf
)
and take it with you to discuss. Most of ASPS patient have thoracic surgery to remove their lung metastases and you should as his doctor why your husband can not have it. It is his best chance at the moment.

[Bonni Hess]

Dear Sheree,
Thank you for writing to update all of us about your husband's current situation and the date of his upcoming checkup. What kind of scans will he be having for his checkup? Hopefully he will have chest, abdominal, and pelvic CT's and possibly a brain MRI and bone scan if he hasn't had a brain MRI and bone scan within the past six months. Our experience with this disease has shown that it is very important to be vigilant in having regular scans so that any new tumors can be diagnosed and treated before they grow too large for resection or ablation. I am so sorry to hear that your husband is coughing more and feeling increasingly tired, and I think that this is concerning in view of the fact that he has not yet received any treatment to try to reduce the tumor load in his lungs. Perhaps you can ask the doctors about the promising new ARQ-197 treatment which is discussed on the Home Page of this Web site to try to find out if this Phase 2 Clinical Trial is available for your husband. My special caring thoughts and best wishes will be with your husband and your family on the 17th, and I will be anxiously awaiting your update and holding tight to Hope for good news. In the meantime, please take care Sheree and keep in touch as you are able.
With special caring and continued Hope,
Bonni Hess

[Karen Imm]

Hi Sherree,
Thank you so much for keeping us informed on your husband's upcoming scans. My thoughts and prayers will be with you on the 17th. I hope you are able to let us all know the outcome. I also hope you are able to convince the doctors of the importance of some type of treatment. As I have written before. I have had 2 large tumors near the trachea. Doctors initially told me there was nothing they could do. Then I found a surgeon willing to take one of the tumors out. With the second tumor, I ended up radiating it. Both times the outcome was positive. However, if I had just gone along with the doctor's first recommendations, I would not be here today. I have learned that no matter how nice your doctor may be, you have to fight for yourself and always be looking for options and answers. They are out there and there are people on this website willing to help you find them.
I wish I could help you in some way. Please know that you are being thought of and cared for. And please feel free to e-mail me.
I will be praying for you,
Karen Imm

[Olga]

I have found that there is a Sydney Sarcoma Unit at Royal Prince of Wales hospital in Randwick NSW, their phone number is 02 9382 2890 - if you will be in need of the second opinion after your husbands next meeting with his oncologist.

[Sheree]

Hi there.....just an update..Mick has been going pretty good we had a check up a week ago and the lumps seem to be the stable not much bigger anyway....But yesturday 22/04/08 he started to cough and he has now started to cough up blood... I took him to hospital this afternoon and they have addmitted him over night and will have a tube put dowm his thoart to his check out his lungs in the morning. Hopefully he has just bursted some blood vessels when coughin but there has been a heap of blood everytime he has a coughing fit whick all up so far have been 5. I dont know what it means but will now more tommorrow after they do hias test..... Its our wedding anniversary tommorrow so i am really hopeing for some goosd news.... Will keep you updated!!!!!!
Sheree

[Sheree]

Hi everyone just an update on Mick. Well he has started chemo yesturday. Things dont seem to be going to well. He has lost in 3 years about 12kg all up but he lost 4kg since september since he had a hit of radiation to one of the lumps the biggest one round his airways. It didnt really do anything. The lump didnt really grow but it didnt really shrink but the othere lumps have growen and more have showen up. He was starting to get very depressed as all he does is cough and feel buggered all the time.Well the doc has no idea really if this will work they are just hopeful that it will stop the lumps from growing anymore. He will be in hospital for 3 days every 3 weeks as he has the chemo over the 3 days bout 4 hours a day it takes.Im still trying to process all the info that was giving to me yesturday.Well on the brighter side Mick and i finally conceived a baby after 5 yrs via ivf he was born in april so mick now has his boy lol
Talk to you soon
Sheree

[Bonni Hess]

Dear Sheree,
Thank you for writing to update. CONGRATULATIONS!! to you and Mick on your precious new baby boy. I am so deeply sorry that in the midst of your great joy of having a long awaited son, Mick's disease is continuing to advance with increased growth in the size and number of his lung mets, and concerning weight loss. Is Mick being treated by a sarcoma oncoligist, and what kind of chemo is Mick being treated with? From the chemo treatment regimen that you described, it sounds like it might possibly be adriamyacin/ifosfomide? Hopefully whatever chemo he is receiving, it will be very effective in stabilizing the progression of his disease and shrinking/killing his mets. Please take care Sheree, know that my special thoughts and prayers are with Mick and you, and keep this Board updated as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess

[Fictional]

Best wishes and congratulations on your baby boy! We will keep you in our prayers. FYI, there have been other ASPS patients in this forum (a longer time ago) after conventional chemotherapy - but then they either went to surgery or did some other intervention and stabilized. Under the sequential chemotherapy therapy, I put a link about a pharmaceutical company that lodged an intellectual property patent to protect their finding in solid tumors (one type of sarcoma) that following chemotherapy with an IGF-inhibitor like R1507 improved tumor cell death.

Sometimes VEGF can increase after a round of chemotherapy too, so if it looks as if he progresses on chemo, then switching to an antiangiogenesis medication like sutent or pazopanib can shrink the cancer.

Blessings to you for better health in the coming year,

'F'

[Sheree]

Hey thanks everyone on the congrates for bub. He is well worth waiting for. Mick now has to go for a MRI tommorrow on his knee. He was told it was just ligament which was making it sore from our gp but he went to a knee doc yesterday and he thinks something could be inthe bone he rang our doctor that has been dealing withthe cancer and well we have to see him with in the week so it doesnt sond good at all. The results from chemo is they didnt shrink the lumps at all but onthe positive they didnt grow. will keep you up to date bout his knee when we know something. ( it the knee which the leg the cancer was in so it doesn tlook real good but fingers cross) .Thanks again for replying xxxxx

[Bonni Hess]

Dear Sheree,
Thank you for writing to update the Board about Mick. It was so good to hear from you, but I am so sorry for the new concern regarding Mick's knee. I am sorry too that the chemo was not successful in shrinking his mets, but am grateful that at least there was no increased growth. My very best wishes and special prayers will be with Mick and you for a positive outcome to the knee MRI with results that show no bone mets, and only a benign cause of Mick's knee pain. I will be anxiously awaiting your next update and holding Mick, you, and your precious new baby boy very close in my heart and most caring thoughts.
With special caring and continued Hope,
Bonni

[Sheree]

Hi all well we have the results from the MRI and even thought we havent spoken to the cancer doctor yet the report isnt good. I dont understand a few of the 'big' words but hey we not silly either.Hope you dont mind but i am going to put the results up i am hoping that someone can tell me what they makeof it. The knee doctor that Mick seen said himself it isnt good but didnt go to much into it as he wants the main doctor to do that. Well here goes......

" There is a mass arising in the lateral femoral condyle which measures 4.6 x 2.8 x 4.9cm. The mass has peripheral enhancement and has a soft tissue component extending outside the cortical margin measuring approx 5mm beyond the cortical margin. There is prominent oedema in the distal femur. There is also reactive bone brusie in the lateral aspect of the patella.

Cruciate ligaments are intact. All ligaments and cartiliage appear normal.

Comment
There is a 4cm mass in the lateral femoral condyle which is most likely a metastasis. Primary tumour cannot be excluded. There are aggressive features associated with the lesion with destruction of the cortical bone and soft tissue mass."

There is the report hopefully someone can help me. It is bad if its in bone isnt it???

I just wanna say thank you again to all of you who have kept us in your prays and thoughts and thank you for your well wishes. I am just praying that something can be done to save my husband.
Thanks
Sheree

[Sheree]

ALso just a question is there any medication that Mick should be taking for the tumours? The doctors have got him on nothing i dont know if there is something out there that shrinks this darn thing or not??