sukie53

Dearest Shelly,

I am so sad to hear this – you seemed to be doing so wonderfully well on plx. I pray every day for you and do hope that God gives you strength for the next stage in the battle, I'm sure he will. I don't know anything about brain mets but I am sure that with the wisdom of your doctors and the wealth of information here you will find the best path forward.

I read that you were approaching a busy time with your kids – I think that it a good thing as it is something else to focus on. I found out that my mel had moved to stage 4 just 3 weeks before our daughters wedding but it was amazing how the excitment carried me though.

Regarding myself….plx failed for me 2 months ago. I was pretty upset as I had only had 3 months on it. I knew it wouldn't last for ever but thought it might get me through to the summer. On the good side, loads of mets which plx had got rid of stayed away, but 2 large abdominal masses just grew like crazy. I have no idea about what it happening in my brain, as like you say, brain ct doesn't get done on the trial – I too think that is strange. I am now on Dacarbazine and just had the 2nd round. I am tolerating it quite well and although response rate is poor I am wondereing if I might be one of the lucky ones as I have had a lot of symptom relief. After this they are planning to give my ipi.

God bless you Shelly,

xSukie

Dearest Shelly,

I am so sad to hear this – you seemed to be doing so wonderfully well on plx. I pray every day for you and do hope that God gives you strength for the next stage in the battle, I'm sure he will. I don't know anything about brain mets but I am sure that with the wisdom of your doctors and the wealth of information here you will find the best path forward.

I read that you were approaching a busy time with your kids – I think that it a good thing as it is something else to focus on. I found out that my mel had moved to stage 4 just 3 weeks before our daughters wedding but it was amazing how the excitment carried me though.

Regarding myself….plx failed for me 2 months ago. I was pretty upset as I had only had 3 months on it. I knew it wouldn't last for ever but thought it might get me through to the summer. On the good side, loads of mets which plx had got rid of stayed away, but 2 large abdominal masses just grew like crazy. I have no idea about what it happening in my brain, as like you say, brain ct doesn't get done on the trial – I too think that is strange. I am now on Dacarbazine and just had the 2nd round. I am tolerating it quite well and although response rate is poor I am wondereing if I might be one of the lucky ones as I have had a lot of symptom relief. After this they are planning to give my ipi.

God bless you Shelly,

xSukie

Hi Adrienne,

I am so sorry to hear about your Dad, it's great that he has you looking into all this for you so that he can just concentrate on fighting this disease.

This would be my opinion, although utlimately there is no right or wrong decision I don't think. I am on plx. It worked remarkabley quickly and has improved my quality of life amazingly in the 4 months I have been on it. I haven't posted very much here so if you search under sukie53 you should be able to read my other posts. The side effects aren't too bad at all, so if your Dad's disease is well advanced and his life expectancy is short, I would go for plx first becuase it has an 80% response rate and it happens quickly. . Also, if he is poorly following the Il 2 it will give him a chance to regain his strength. Plx does fail quite quickly in some people so maybe that would be the time to move on to ipi.

However, if your Dad is quite fit and his disease is not too far progressed, he might be better starting with ipi. It can be very slow to work, but the side effects can be more serious I believe. I haven't tried this yet though so I cannot really say much about it.

For me, plx has been an amazing drug, which brought me from the brink of death, so I am bound to ne biased!

Let me know if you need any more info,

xSukie

Hi Adrienne,

I am so sorry to hear about your Dad, it's great that he has you looking into all this for you so that he can just concentrate on fighting this disease.

This would be my opinion, although utlimately there is no right or wrong decision I don't think. I am on plx. It worked remarkabley quickly and has improved my quality of life amazingly in the 4 months I have been on it. I haven't posted very much here so if you search under sukie53 you should be able to read my other posts. The side effects aren't too bad at all, so if your Dad's disease is well advanced and his life expectancy is short, I would go for plx first becuase it has an 80% response rate and it happens quickly. . Also, if he is poorly following the Il 2 it will give him a chance to regain his strength. Plx does fail quite quickly in some people so maybe that would be the time to move on to ipi.

However, if your Dad is quite fit and his disease is not too far progressed, he might be better starting with ipi. It can be very slow to work, but the side effects can be more serious I believe. I haven't tried this yet though so I cannot really say much about it.

For me, plx has been an amazing drug, which brought me from the brink of death, so I am bound to ne biased!

Let me know if you need any more info,

xSukie

Hi Adrienne,

I am so sorry to hear about your Dad, it's great that he has you looking into all this for you so that he can just concentrate on fighting this disease.

This would be my opinion, although utlimately there is no right or wrong decision I don't think. I am on plx. It worked remarkabley quickly and has improved my quality of life amazingly in the 4 months I have been on it. I haven't posted very much here so if you search under sukie53 you should be able to read my other posts. The side effects aren't too bad at all, so if your Dad's disease is well advanced and his life expectancy is short, I would go for plx first becuase it has an 80% response rate and it happens quickly. . Also, if he is poorly following the Il 2 it will give him a chance to regain his strength. Plx does fail quite quickly in some people so maybe that would be the time to move on to ipi.

However, if your Dad is quite fit and his disease is not too far progressed, he might be better starting with ipi. It can be very slow to work, but the side effects can be more serious I believe. I haven't tried this yet though so I cannot really say much about it.

For me, plx has been an amazing drug, which brought me from the brink of death, so I am bound to ne biased!

Let me know if you need any more info,

xSukie

Hi Adrienne,

I am so sorry to hear about your Dad, it's great that he has you looking into all this for you so that he can just concentrate on fighting this disease.

This would be my opinion, although utlimately there is no right or wrong decision I don't think. I am on plx. It worked remarkabley quickly and has improved my quality of life amazingly in the 4 months I have been on it. I haven't posted very much here so if you search under sukie53 you should be able to read my other posts. The side effects aren't too bad at all, so if your Dad's disease is well advanced and his life expectancy is short, I would go for plx first becuase it has an 80% response rate and it happens quickly. . Also, if he is poorly following the Il 2 it will give him a chance to regain his strength. Plx does fail quite quickly in some people so maybe that would be the time to move on to ipi.

However, if your Dad is quite fit and his disease is not too far progressed, he might be better starting with ipi. It can be very slow to work, but the side effects can be more serious I believe. I haven't tried this yet though so I cannot really say much about it.

For me, plx has been an amazing drug, which brought me from the brink of death, so I am bound to ne biased!

Let me know if you need any more info,

xSukie

Hi Simmy,

I started the Brim3 trial in October 2010 and was allocated plx.

To answer your questions:

I was fine for 10 days then I got a bad rash. It was like bad sunburn and spread all over my body expect my face. Along with it I got the rash on my throat, dry eyes and cystitis. The tablets were doing me so much good though that I was determined to stick it out. After about 2 weeks it started to pass and soon my skin was back to normal. Since then the side effects have been very managable, sometimes I get tired but not all the time. Sometimes I feel a little sickly but not much. My hair has thinned out loads so I bought a couple of wigs so that I look nice when I go out! I have had 2 small skin lesions removed, both were squamous cell carcinoma – this is a recognised side effect. However, other similar lesions resolved without surgical intervention. None of this bothered me too much. The rash was the worst side effect.

I saw this drug working within a week. It was like some kind of miracle. I have peritoneal mets (one was huge at 23 cm) – my tummy was very swollen up and I had a 40 inch waist although I am a slim lady. Within a week my tummy had reduced to 31inches and I lost a pound or two every day as the tumours and fluid melted away. I had sub qs under my skin which started to go down in 3 days. My first scan (6 weeks) showed that many of my tumours had reduced by half, some had disappeared, especially the ones in my lungs and the lymph nodes in my neck and around my heart. The large tumour only reduced by a third. The second scan showed some reduction in all tumours except the big one, which stayed the same. I have to say that I was a little disappointed by this, especially after the dramatic first scan. I am due next scans in 4 weeks time. I knew it was working because of the disappearance of the sub qs, and the reduction in my tummy size. I also felt loads better, i was no longer breathless, did not need pain killers and my apetite returned.

I am still taking the drug after 4 months. Like you say, the effects don't last for ever, but for me it was, I'm sure, a life saver. I was dying in September and I certainly ain't now! I too live for the day, it is great to be alive and feel OK. My  daughter was married recently, we had a great Christmas and are planning a holiday – thank you plx4032!

Hope this helps Simmy – let me know if you need any more info,

xSukie (UK)

Hi Simmy,

I started the Brim3 trial in October 2010 and was allocated plx.

To answer your questions:

I was fine for 10 days then I got a bad rash. It was like bad sunburn and spread all over my body expect my face. Along with it I got the rash on my throat, dry eyes and cystitis. The tablets were doing me so much good though that I was determined to stick it out. After about 2 weeks it started to pass and soon my skin was back to normal. Since then the side effects have been very managable, sometimes I get tired but not all the time. Sometimes I feel a little sickly but not much. My hair has thinned out loads so I bought a couple of wigs so that I look nice when I go out! I have had 2 small skin lesions removed, both were squamous cell carcinoma – this is a recognised side effect. However, other similar lesions resolved without surgical intervention. None of this bothered me too much. The rash was the worst side effect.

I saw this drug working within a week. It was like some kind of miracle. I have peritoneal mets (one was huge at 23 cm) – my tummy was very swollen up and I had a 40 inch waist although I am a slim lady. Within a week my tummy had reduced to 31inches and I lost a pound or two every day as the tumours and fluid melted away. I had sub qs under my skin which started to go down in 3 days. My first scan (6 weeks) showed that many of my tumours had reduced by half, some had disappeared, especially the ones in my lungs and the lymph nodes in my neck and around my heart. The large tumour only reduced by a third. The second scan showed some reduction in all tumours except the big one, which stayed the same. I have to say that I was a little disappointed by this, especially after the dramatic first scan. I am due next scans in 4 weeks time. I knew it was working because of the disappearance of the sub qs, and the reduction in my tummy size. I also felt loads better, i was no longer breathless, did not need pain killers and my apetite returned.

I am still taking the drug after 4 months. Like you say, the effects don't last for ever, but for me it was, I'm sure, a life saver. I was dying in September and I certainly ain't now! I too live for the day, it is great to be alive and feel OK. My  daughter was married recently, we had a great Christmas and are planning a holiday – thank you plx4032!

Hope this helps Simmy – let me know if you need any more info,

xSukie (UK)

Hi Shelley,
I am so happy to hear your wonderful news! I am on my 5th cycle so am following your progress with great interest. My first scan showed a huge reduction in tumour burden but the second one showed only slight shrinkage so I was a little disappointed. You have given me hope that mel will continue to shrink.
I too have had little in the way of side effects but hair is very thin and I have treated myself to a wig – looks kinda nice actually. Wondering whether it will start to grow back whilst still taking the drug.
Hope you continue to do so well,
Xsukie

Hi Shelley,
I am so happy to hear your wonderful news! I am on my 5th cycle so am following your progress with great interest. My first scan showed a huge reduction in tumour burden but the second one showed only slight shrinkage so I was a little disappointed. You have given me hope that mel will continue to shrink.
I too have had little in the way of side effects but hair is very thin and I have treated myself to a wig – looks kinda nice actually. Wondering whether it will start to grow back whilst still taking the drug.
Hope you continue to do so well,
Xsukie

 

 

Hi Janice, this is the first time I have posted here but your post caught my eye and I thought I would reply.

I was dx with a small mel on my back in 2003. I thought it was in the past until i noticed a small bump next to my old scar this summer. It turned out that mel was back so I was sent for ct scans. I was feeling well at the time so was shocked to find that I had extentive mets in my lungs, neck nodes and nodes around the heart, as well as multiple peritoneal mets, one being 23 cm long. soon after I started to get subqs. I became very ill quite rapidly – breathless, severe pain and a very swollen tummy and legs. The large tumour was pressing on my stomach so much that I could barely swallow water.

I was put onto plx/darcabazine trial in early Oct and allocated plx. All that I can say is that for me it has been an amazing drug. My waist measurement dropped from 40" to 31" in a week, every day I lost a couple of pounds in weight as the tumours in my tummy reduced so rapidly – (it wasn't fluid loss as the scans showed I had little excess fluid). I was free of pain and not breathless. after a week my apetite srarted to return and I began to eat normally again. My first scans, after 6 weeks, showed some smaller tumours had disappeared, all others were reduced by at least 50%.

After 3 weeks I started to drive my car, visited friends and did my shopping. I was dying before this and I feel as if I have got my life back for a while. I saw our daughter get married, had my birthday and am looking forward to Christmas. I am so grateful for this repireve. In January we are planning a holiday in Dubai to visit our other married daughter who lives there. 2 months ago i never thought that this would happen.

OK – side effects. On the scale of chemo side effects, not bad at all. Yes, my lovely long hair is getting a lot thinner. I sometimes get tired so I have what we jokingly call in our house 'a lady's lie down!'. After 10 days I got a very severe rash, it felt  like bad sunburn yet I was shivery at the same time. I was determined to stick with the tablets as they were saving my life. After about 2 weeks the rash started to go down. I believe that some people get photosensitive – I live in the north of England so haven't had the chance to check that one out yet – hehe. But come the summer I will be careful to cover up. I have had no joint pains. I have recently started to notice some strange little lesions appear on my shins. I believe that a side effect is a very low grade squamous cell carcinoma which is easily removed and does not mean stopping the tablets – i think this might be the case for me.

Now, I know that this is very early days, I have only taken the tablets for 9 weeks. Evidence seems to be that this treatment does not last, some people on the phase  2 trial only lasted for 2 months before the mel found a way to bypass it. I believe though that a couple of others on it stayed well for 2 years. I am just grateful that there is something out there that works so effectively. It has given me time to build up my strength, get my iron levels up, and to re-evaluate my life in the light of stage 4 illness. I am looking at plans B and C which will take over when (or if) plx fails me, perhaps a MEK or IPi.

Sorry that this ended up so long, hope it helps with your decision,

xSukie (UK).

Hello Grady, nice to hear from you. I don’t know the sizes of all my mets – sadly I have too many on the scans to mention them all by name! The scans have just given sizes for the biggest which are in my abdomen. However I do know that they were all under 1 cm and have resolved or are significantly reduced in size. When I go to the hospital I see another lady who has only been on plx for 6 weeks. She had lots of small pelvic nodules and all disappeared on the first scan. My guess is that it works best for small tumours, even if there are a lot of them.
I have heard that Roche might be planning expanded access for this drug. I hope you manage to get it- there are also mek inhibitors which I believe can work if you are braf+, but I am no expert on this. Good luck and God bless. If I can help any further just let me know. I read here quite a lot but don’t post much,
sukie.

Hello Grady, nice to hear from you. I don’t know the sizes of all my mets – sadly I have too many on the scans to mention them all by name! The scans have just given sizes for the biggest which are in my abdomen. However I do know that they were all under 1 cm and have resolved or are significantly reduced in size. When I go to the hospital I see another lady who has only been on plx for 6 weeks. She had lots of small pelvic nodules and all disappeared on the first scan. My guess is that it works best for small tumours, even if there are a lot of them.
I have heard that Roche might be planning expanded access for this drug. I hope you manage to get it- there are also mek inhibitors which I believe can work if you are braf+, but I am no expert on this. Good luck and God bless. If I can help any further just let me know. I read here quite a lot but don’t post much,
sukie.