IMA901/Sunitinib vaccine trial update

enae

I haven't posted in a while and it's time to share how things are going for my husband. He entered the IMA901/Sunitinib vaccine trial in October - sadly got in the control group and didn't receive the vaccine. He's been only on Sutent for the last 4 months. After the first CT - 3 months after starting Sutent the results were very optimistic - he had 30% reduction on both meths.( Mets are on the abdominal wall and close to the liver - at both surgical ports post radical nephrectomy 2010).

He started another session of Sutent on max dose for 28 days/session with 2 weeks breaks. Side effects are as expected – nausea, upset stomach heartburn, change of taste. He had high blood pressure from the Sutent, but now is under control with medication. His skin turns yellow for 2-3 weeks and his facial hair turned white after first few months. The side effects are pretty bad in the last two weeks of each 28 day sessions. His taste doesn't returns to normal in between. His oncologist explained that it takes a long time for the taste buds to return to normal and two weeks are not enough. He has another scan in 2 months and will keep you updated on how things are going.

 

Ena

 

Texas_wedge

Update

Thanks for the update and it's good to hear that your Husband is doing so well.  It's cheering for me since I also have an abdominal wall tumour close to my liver and I'm waiting for a first scan to establish whether Votrient is shrinking or at least stabilising it, which seems to be the case from the way I'm feeling.

Since he is suffering substantial side-effects, why aren't they changing the administration to the 2 weeks on, 1 off regimen, instead of 4 weeks on and 2 weeks off?  That change seems to dramatically reduce the side-effects without detriment to the efficacy of the treatment.

Texas_wedge

Update

Thanks for the update and it's good to hear that your Husband is doing so well.  It's cheering for me since I also have an abdominal wall tumour close to my liver and I'm waiting for a first scan to establish whether Votrient is shrinking or at least stabilising it, which seems to be the case from the way I'm feeling.

Since he is suffering substantial side-effects, why aren't they changing the administration to the 2 weeks on, 1 off regimen, instead of 4 weeks on and 2 weeks off?  That change seems to dramatically reduce the side-effects without detriment to the efficacy of the treatment.

enae

Texas_wedge said:

Update

Thanks for the update and it's good to hear that your Husband is doing so well.  It's cheering for me since I also have an abdominal wall tumour close to my liver and I'm waiting for a first scan to establish whether Votrient is shrinking or at least stabilising it, which seems to be the case from the way I'm feeling.

Since he is suffering substantial side-effects, why aren't they changing the administration to the 2 weeks on, 1 off regimen, instead of 4 weeks on and 2 weeks off?  That change seems to dramatically reduce the side-effects without detriment to the efficacy of the treatment.

Thank you Texas_wedge

I hope you get great results after your scan too. I think they are keeping him on this regiment, because of the trial requrements. We'll discuss the posibility with his doctor at his next appointment in two weeks. Thanks for the info. They may have to take him off the trial, but since he is on the control end I am sure they won't mind. His doctor is very caring and he calls at least once a week to check on how is he doing. He said that since so far Sutent is working and he is able to tolerate the side effects they will keep him on this regiment, but it's getting harder and I am sure they will modify the dosage or the regiment for next session. Thanks again and praying for great results for you.

ClaraW

Texas_wedge said:

Update

Thanks for the update and it's good to hear that your Husband is doing so well.  It's cheering for me since I also have an abdominal wall tumour close to my liver and I'm waiting for a first scan to establish whether Votrient is shrinking or at least stabilising it, which seems to be the case from the way I'm feeling.

Since he is suffering substantial side-effects, why aren't they changing the administration to the 2 weeks on, 1 off regimen, instead of 4 weeks on and 2 weeks off?  That change seems to dramatically reduce the side-effects without detriment to the efficacy of the treatment.

When is your scan Tex?
I

When is your scan Tex?

I wish you the best, always.

C

ClaraW

ClaraW said:

When is your scan Tex?
I

When is your scan Tex?

I wish you the best, always.

C

CT end of Jan

Ah, dear TW, I just read your blog entry (6th of Jan). I am so very glad to read that your symptoms are much improved and that the mass most probably has shrunk! I also understand that your CT is toward the end of Jan.

Nonetheless, I shall be crossing my fingers and toes for you this month!

Kindest Regards,

C

Texas_wedge

ClaraW said:

CT end of Jan

Ah, dear TW, I just read your blog entry (6th of Jan). I am so very glad to read that your symptoms are much improved and that the mass most probably has shrunk! I also understand that your CT is toward the end of Jan.

Nonetheless, I shall be crossing my fingers and toes for you this month!

Kindest Regards,

C

Jan scan man
Clara, thank you for your very kind words. Any news of the SIL? If so, I pray that it's good news. At least you could remind her that I share with her the mostly sarcomatoid and extensively necrotic pathology.

We watch anxiously from so far away, in our wet and icy wastes as Aussies endure the terrible fires - I hope you and yours are not directly affected.

jjf25

Kidney cancer and bone mets

Can anyone help me. Is there anyone of you who has had paralyis after bout of radiation because of disease in the spinal cord region, called spinal cord compression. The choice is life expectancy of months or go on drugs that will give bad side effects. With immobility it will be difficult to have good quality of life. To make a decision what should i do Take tarceva with Avastin or no drugs at all. a very difficult decision to make at 35 

jjf25

Kidney cancer and bone mets

Can anyone help me. Is there anyone of you who has had paralyis after bout of radiation because of disease in the spinal cord region, called spinal cord compression. The choice is life expectancy of months or go on drugs that will give bad side effects. With immobility it will be difficult to have good quality of life. To make a decision what should i do Take tarceva with Avastin or no drugs at all. a very difficult decision to make at 35

alice124

jjf25 said:

Kidney cancer and bone mets

Can anyone help me. Is there anyone of you who has had paralyis after bout of radiation because of disease in the spinal cord region, called spinal cord compression. The choice is life expectancy of months or go on drugs that will give bad side effects. With immobility it will be difficult to have good quality of life. To make a decision what should i do Take tarceva with Avastin or no drugs at all. a very difficult decision to make at 35 

Kidney cancer and bone mets

JJ,

I regret you're dealing with such a serious situation at such a very young age. But I hope you'll fight. What is your history to date? When were you originally diagnosed? Where have you received treatment?

New drugs and treatments are becoming available fast and furiously providing new weapons against Cancer and allowing many on this Board to accept their Cancer as a chronic disease, not a fatal one. And while I have no personal experience with the drugs you mention, I am aware that side effects vary greatly; some patients experience intolerable side effects while others have next to none. I hope you'll take the time to read  Fox's (Foxhd) history; it's a must read for anyone given a dire diagnosis and will be a healthy step in your adoption of the kick butt attitude that he, Paula, Tex,  Liz, John (my husband) and so many more LIVE on this Board. They are admirable coaches in this fight.

Perhaps your oncologist will start you out with both drugs, Tarceva and Avastin, and then after careful monitoring determine that only one of the two is necessary. Are you also taking Zometa or Xgeva? And if you find the drugs to be too difficult, perhaps a new and improved version will become available. Or perhaps a trial will open up?

I can't imagine how difficult this is for someone so young but you're still here. And you're here for a reason. Proof positive that whomever is making those life and death calls isn't done with you yet. This is a wonderful place to launch your fight; hope you will.

 

ClaraW

Texas_wedge said:

Jan scan man
Clara, thank you for your very kind words. Any news of the SIL? If so, I pray that it's good news. At least you could remind her that I share with her the mostly sarcomatoid and extensively necrotic pathology.

We watch anxiously from so far away, in our wet and icy wastes as Aussies endure the terrible fires - I hope you and yours are not directly affected.

Symptomatic relief for my SIL

TW,

 

Thankfully, our area is not directly affected by the bushfires and we have not been ordered to evacuate. The weather is cooling down alittle, so I'm hoping the fires are now under control in the rest of the state.

My SIL is in a palliative care ward at our local hospital for pain control. It is very sad for me to tell you that she has multiple metastasis to her lungs and bones.  A few weeks ago she had radiation and dexamethasone injections for vertebral metastasis causing spinal cord compression. The treatment she's receiving at the moment are bisphosphonates for her hypercalcaemia and analgesics for pain.

It breaks my heart to think that had she accepted active treatment like the rest of the crew on this board, she's likely to be in a much better condition than she is now.

When one door closes, another opens. I am very hopeful that with so many ongoing trials, the magic bullet is only a few treatments away. I echo the quote "we are the crew who are changing the numbers!"

 

Kindest Regards,

Clara

 

 

Texas_wedge

jjf25 said:

Kidney cancer and bone mets

Can anyone help me. Is there anyone of you who has had paralyis after bout of radiation because of disease in the spinal cord region, called spinal cord compression. The choice is life expectancy of months or go on drugs that will give bad side effects. With immobility it will be difficult to have good quality of life. To make a decision what should i do Take tarceva with Avastin or no drugs at all. a very difficult decision to make at 35

Bone mets, radiation etc

JJ you are very welcome here and I hope you'll come back.  However, we're mostly just patients and caregivers here, with no real medical expertise.  Yours is a tough spot to be in  so PLEASE  join the ACOR forum called KIDNEY-ONC where there are quite a few people who can almost certainly give you a great deal of help. 

You can find that forum and put your question there by looking at this thread here on CSN:

http://csn.cancer.org/node/247312

Better than that, I'll bring the thread forward to make it easier for you to find it - it's called 

ACOR - how to join lists, such as KIDNEY-ONC, RARE CANCERS, CHROMOPHOBE-RCC, CANCER-DEPRESSION, CANCER-FINANCE, CAREGIVERS,

There are experts there who know a lot about RCC bone mets, spinal cord compression, radiation paralysis, tarceva, Avastin, xgeva and bisphosphonates.  Please do yourself a big favour and get on to that List as soon as you can, giving as much detail as possible about your recent medical history to give the experts there the fastest possible start in advising you.

 

 

jjf25

alice124 said:

Kidney cancer and bone mets

JJ,

I regret you're dealing with such a serious situation at such a very young age. But I hope you'll fight. What is your history to date? When were you originally diagnosed? Where have you received treatment?

New drugs and treatments are becoming available fast and furiously providing new weapons against Cancer and allowing many on this Board to accept their Cancer as a chronic disease, not a fatal one. And while I have no personal experience with the drugs you mention, I am aware that side effects vary greatly; some patients experience intolerable side effects while others have next to none. I hope you'll take the time to read  Fox's (Foxhd) history; it's a must read for anyone given a dire diagnosis and will be a healthy step in your adoption of the kick butt attitude that he, Paula, Tex,  Liz, John (my husband) and so many more LIVE on this Board. They are admirable coaches in this fight.

Perhaps your oncologist will start you out with both drugs, Tarceva and Avastin, and then after careful monitoring determine that only one of the two is necessary. Are you also taking Zometa or Xgeva? And if you find the drugs to be too difficult, perhaps a new and improved version will become available. Or perhaps a trial will open up?

I can't imagine how difficult this is for someone so young but you're still here. And you're here for a reason. Proof positive that whomever is making those life and death calls isn't done with you yet. This is a wonderful place to launch your fight; hope you will.

 

kidney cancer and bone mets

Thank you for the mail Alice124. Can you tell me hoe i find Fox's history. I found it but lost it.Fox did seem a person to mail. He had so much going on and continues to live a normal life.

I live in the UK and a very bleak picture was painted about the side effects of the Avastin/Tarceva combination. I am not sure the oncologist wanted to start the drugs. We in the UK have to pay for these drugs. What are the side effects of the drugs and which is what which drug. Can someone who has immobility in legs tolerate the side effects and not get worse. Please help. Thank you.

alice124

jjf25 said:

kidney cancer and bone mets

Thank you for the mail Alice124. Can you tell me hoe i find Fox's history. I found it but lost it.Fox did seem a person to mail. He had so much going on and continues to live a normal life.

I live in the UK and a very bleak picture was painted about the side effects of the Avastin/Tarceva combination. I am not sure the oncologist wanted to start the drugs. We in the UK have to pay for these drugs. What are the side effects of the drugs and which is what which drug. Can someone who has immobility in legs tolerate the side effects and not get worse. Please help. Thank you.

Kidney cancer and bone mets

JJ,

Tex's advice about joining the ACOR site is good advice. There is more expertise and experience there. I don't recall anyone on this Board sharing experience recently regarding immobility issues, but there are a lot less people on this Board than on ACOR. And, if my memory is correct, one of the moderators on the ACOR Board is from the UK. So she may be able to answer questions more specifically about the UK.

As far as searching for Fox's experience on this Board I'd suggest you use the CSN search box (at the top of Kidney Cancer discussion board) and enter  FOXHD or MDX-1106. You'll likely have to read through the different sites but he has a lot of information out there, so you won't be bored. You'll find his writing inspirational; you'll find him inspirational. He was given a very dire diagnosis in the beginning (believe it was in 2011) but he continues to beat the odds and--like you mention--"continues to live a normal life." (If you call what he does normal .) I wish I could be more helpful but I know you are looking for a quick turnaround in responding.

So--for now--join the ACOR site following Tex's instruction in post and read Fox's history.