Hi Olga
Had an appointment with my oncologist today she is going to try push for cryoblation and find a surgeon for me but in the mean time I’m going to look aswell. She told me there may be a new trial coming up which is phase 1, not sure on the drug name yet.
Do you think I should try and eliminate the tumour near the blood vessel to try and qualify for a TKI drug? I think they don’t want me to go on another PD-1 drug because atezolizumab didn’t work. I’m really worried I’m running out of options.
Geeta from UK Dx 2020 anlotinib
Re: Geeta from UK Dx 2020 anlotinib
Hi Geeta,
It truly is a situation where you need to see a thoracic surgeon and get the consuls started , as they are the doctors calling the shots to what’s doable to your lung situation.
Your inability to breath is a very very important point to be making with either an international radiologist and or a thoracic surgeon. There’s is absolutely no reason they should deny you help in alleviating your effort to breath .
Your oncologist should be advocating for you as well !
Incorporate a friend and your family to help as well.
Your battle is not just your own to shoulder but should involve a team .😊
It truly is a situation where you need to see a thoracic surgeon and get the consuls started , as they are the doctors calling the shots to what’s doable to your lung situation.
Your inability to breath is a very very important point to be making with either an international radiologist and or a thoracic surgeon. There’s is absolutely no reason they should deny you help in alleviating your effort to breath .
Your oncologist should be advocating for you as well !
Incorporate a friend and your family to help as well.
Your battle is not just your own to shoulder but should involve a team .😊
Debbie
Re: Geeta from UK Dx 2020 anlotinib
Lets see what cryo dr and surgeon can/agree to do. The bigger metastasis by the blood vessel needs to be reviewed, and the ones that affect your breathing would be good to get rid of also to improve your quality of life.
These are all attractive options - TKI, clinical trial, and even another ICI drug but from the PD-1 inhibitors class, not PD-L1. Our ppl had better results with the PD-1 inhibitors such as Keytruda or Opdivo. I think there is a chance to have a better response after the tumor load is reduced, you are recovered and have a time to try. Then there are options to try to improve the recognition by doing the targeted irradiation to one of the lung mets. When it is dying, it is being taken apart by the immune cells and they can register that tumor make up.
These are all attractive options - TKI, clinical trial, and even another ICI drug but from the PD-1 inhibitors class, not PD-L1. Our ppl had better results with the PD-1 inhibitors such as Keytruda or Opdivo. I think there is a chance to have a better response after the tumor load is reduced, you are recovered and have a time to try. Then there are options to try to improve the recognition by doing the targeted irradiation to one of the lung mets. When it is dying, it is being taken apart by the immune cells and they can register that tumor make up.
Olga
Re: Geeta from UK Dx 2020 anlotinib
Hi Geeta,
But especially Olga and all the lovely helpful people of this organization.
I talked to Geeta several times already and offered my help to her according the option of ablation and want to do so to anybody in this forum.
@Olga: where do you want to place my offer to help? If anybody worldwide has the option to have radiosurgery at Saphir Radiology in Frankfurt/Main they can sleep over at my place and take a Taxi for their appointments.
Much love
Tanja, Saskia's mom
@Geeta: good luck with Anlotinib now or radiosurgery before for better breathing soon
But especially Olga and all the lovely helpful people of this organization.
I talked to Geeta several times already and offered my help to her according the option of ablation and want to do so to anybody in this forum.
@Olga: where do you want to place my offer to help? If anybody worldwide has the option to have radiosurgery at Saphir Radiology in Frankfurt/Main they can sleep over at my place and take a Taxi for their appointments.
Much love
Tanja, Saskia's mom
@Geeta: good luck with Anlotinib now or radiosurgery before for better breathing soon
Re: Geeta from UK Dx 2020 anlotinib
Tanja, it is truly generous of you.
There is a forum for the travel assistance we have here:
https://cureasps.org/forum/viewforum.php?f=94
perhaps you can post there your offer but select the contact method to be used as PM trough this board - the link is on the right top before your name. That way only ppl registered here can contact you and ask for help.
There is a forum for the travel assistance we have here:
https://cureasps.org/forum/viewforum.php?f=94
perhaps you can post there your offer but select the contact method to be used as PM trough this board - the link is on the right top before your name. That way only ppl registered here can contact you and ask for help.
Olga
Re: Geeta from UK Dx 2020 anlotinib
Hello,
I just wanted to update you all
I have had 5 cycles of anlotinib and I am currently on the 6th cycle.
Feeling much better, no longer breathless, cough is hardly there, no need for oxygen, it was 86 now 98-99. able to do day to day things now which I am so happy about.
Scans show stability
but I am really wanting to reduce tumour burden still, trying to find a way to re visit immunotherapy but its hard with restrictions on the NHS. due to me not responding to Atezolizumab I am worried I won't be eligible for immunotherapy again in UK.
I believe atezolizumab is PD-1 and PD-L1 therefore may confuse the body ??
When I had my first infusion, my wound was open from radiotherapy and my body was very much fighting to heal my leg. I then had my covid vaccine a week after my atez infusion and all of my lymph nodes started to swell, all around head neck, underarms and groin and I had a temp of 40. nothing was getting rid of this after 5 days, I went to A&E (ER) 3 times to be told I had no sign of infections. I then had to take steroids 5 dexamethasone a day for 5 days and that made me go back to normal. I am wondering why this even happened to me and I must of had some response if I had strange symptoms?
can anyone suggest what to do
thank you
I just wanted to update you all
I have had 5 cycles of anlotinib and I am currently on the 6th cycle.
Feeling much better, no longer breathless, cough is hardly there, no need for oxygen, it was 86 now 98-99. able to do day to day things now which I am so happy about.
Scans show stability
but I am really wanting to reduce tumour burden still, trying to find a way to re visit immunotherapy but its hard with restrictions on the NHS. due to me not responding to Atezolizumab I am worried I won't be eligible for immunotherapy again in UK.
I believe atezolizumab is PD-1 and PD-L1 therefore may confuse the body ??
When I had my first infusion, my wound was open from radiotherapy and my body was very much fighting to heal my leg. I then had my covid vaccine a week after my atez infusion and all of my lymph nodes started to swell, all around head neck, underarms and groin and I had a temp of 40. nothing was getting rid of this after 5 days, I went to A&E (ER) 3 times to be told I had no sign of infections. I then had to take steroids 5 dexamethasone a day for 5 days and that made me go back to normal. I am wondering why this even happened to me and I must of had some response if I had strange symptoms?
can anyone suggest what to do
thank you
Re: Geeta from UK Dx 2020 anlotinib
Hi Geeta ,
Remind us of what 5 cycles of Anlotinib are?
Is that about 5 months ?
I feel your lymph node response was a result of your body be immune compromised and fighting the covid vaccine,so I would bet that you are currently in better health and would benefit from immune checkpoint inhibitors in the near future.
Lymph node enlargement can be a good sign of immune checkpoint inhibitor response as well. I believe the doctors would of had to of performed a biopsy to determine if the enlargement was as a result of the ICI ?
https://www.ncbi.nlm.nih.gov/pmc/articl ... o=0.781250
It’s awesome to hear of your cough being less which leads me to believe that the tumors are reducing ?
Remind us of what 5 cycles of Anlotinib are?
Is that about 5 months ?
I feel your lymph node response was a result of your body be immune compromised and fighting the covid vaccine,so I would bet that you are currently in better health and would benefit from immune checkpoint inhibitors in the near future.
Lymph node enlargement can be a good sign of immune checkpoint inhibitor response as well. I believe the doctors would of had to of performed a biopsy to determine if the enlargement was as a result of the ICI ?
https://www.ncbi.nlm.nih.gov/pmc/articl ... o=0.781250
It’s awesome to hear of your cough being less which leads me to believe that the tumors are reducing ?
Debbie
Re: Geeta from UK Dx 2020 anlotinib
Hey debbie
5 cycles is 3 months. 2 months on one week off.
Slight reduction to start with now it’s stable, not sure how much it reduced the doctor said it was a slight reduction.
No the doctor did not perform a biopsy on swollen lymph nodes as they said the steriods would resolve and they did. This was over a year ago now after my first infusion of atezolizumab
Hope this helps
Xx
5 cycles is 3 months. 2 months on one week off.
Slight reduction to start with now it’s stable, not sure how much it reduced the doctor said it was a slight reduction.
No the doctor did not perform a biopsy on swollen lymph nodes as they said the steriods would resolve and they did. This was over a year ago now after my first infusion of atezolizumab
Hope this helps
Xx
Re: Geeta from UK Dx 2020 anlotinib
Sorry two weeks on one week off **
Re: Geeta from UK Dx 2020 anlotinib
perhaps you did have some response to immunotherapy based in what you described, on the other hand having a vaccine during immunotherapy can cause this effect as well as your checkpoint were blocked. Looks like your immune system does work apparently overall. As of now, there is no other choice for you but to stay on the Anlotinib, and to monitor the response. If you need in the future in an unfortunate turn of events A. stops working, we will provide you with Ivan's oncologist contact info here in Vancouver, Canada re. his success on Keytruda, it is PD-1 block and seem to be working well in ASPS.
Olga