Re: Need input!
 

End of April!
Yes - I'm glad as well - if I had postponed my scan until after wedding - which I had thought about. I would have missed the trial by over a month!!

Re: Need input!
 

Juls,

I have to agree--you are very lucky.

Kadcyla/TDM-1 is expensive for what the average result is. It doesn't double overall survival (looked at from a group perspective), but just adds months. I'm glad they're looking at other drugs to combine with it. That being said, it has been a "home run" for some people. Herceptin alone is actually a home run for some people.

Cancer is us, and each of us is unique. Eventually every cancer patient will have a unique, customized treatment plan. Until then, those of us who are already in the "lottery" as Jedrik calls it have to play the cards we're dealt.

Re: Need input!
 

Thanks Amy.

I am wavering a little tonight!
Wonder if I am focusing on Kadcyla & not investigating other drugs etc. Not that I have been offered anything other than another AI if I don't get on trial.
Surely there are other drugs available?
In my area of UK - TDM-1, Tykerb & Perjeta n/a unless on a trial.
Have already had Docetaxol, Perjeta, Femara, Xeloda along with Herceptin and Zometa.
Also not sure if off Zometa when on trial drugs.
I was told I did well on all treatments! All blood tests, particularly in last few months really good, so a bit surprised by all this.
Any thoughts anybody!
Fortunately I feel good!
Juls

Re: Need input!
 

Dear Jules:

Here's a link to a summary from about a year ago: http://www.gotoper.com/publications/...merging-agents

And here's another good overview: http://www.medscape.com/viewarticle/870720

There's a new drug coming along for people who are both ER and HER2 positive that looks quite promising. It's called tucatanib.

That being said, I see no reason not to try Kadcyla (a/k/a TDM-1).

While I wait around for something new to be approved (or for a study. . . .) I'm doing Herceptin and Eribulin. I have mets in my lungs and in one vertebra. My bone met doesn't seem to respond to HER2 targeted therapies.

There are other classes of chemo that can be given with Herceptin. And novel combinations can be tried.

Hang in there! I'm so glad you feel good and your blood tests are good.

Amy

Re: Need input!
 

Thanks Amy- I'll have a look at both.
Have read a little about Tucatanib
Just been on Onco link re this new trial drug I have been offered! Has many side effects!
3 am & I'm still up researching!
Juls

Re: Need input!
 

I spoke to my doctor about Tucatanib a few weeks ago, and she told me that you can’t take Tacatanib (or be part of the trial for it) until you have taken Perjeta/Herceptin/Taxol and TDM-1 first. She also told me that there are better drugs on the market, although she didn’t tell me what they were called. That being said, I think people need to take TDM-1 before they qualify for other drugs. Juls, it’s up to you what you do, but I think that the TDM-1 trial is your best option right now, unless you can get Perjeta/Herceptin/Taxol (although I think you said that Perjeta is not covered where you live). Talk to your doctor about your other options, and see what she says.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Hi Tiffany

Thanks for reply.

I have already been on a trial with Perjeta & had progression after approx 2 years on it. To be accurate I had nearly 3 years on Perjeta but that was because 2 bone mets missed for a year on 4 CT's(?) so perjeta continued. Got 12 months more that I should have had! Hopefully it did help even if just a little.

I haven't been offered anything else. The only reason that an AI mentioned was because I said I'd hoped for no treatment change until end of April (after my Daughters wedding in 11 weeks) & Onc said she could give me an AI to tide me over till then! Personally I don't think an AI only for 3 months is a great option. It's a no go anyway because trial closes in less than 8 weeks.
Once again I feel that they had already decided my treatment. It had already been discussed with everyone except me.
I know its my decision in end but I think all options should have been given.
I do think that trial is my only option - I want TDM-1. Just concerned about side effects Apparently trial drug (if I get it) has "weird s/effects!!

Got appt with new trial Doctor on Thursday so will find out a bit more!
Juls

Re: Need input!
 

Hi Juls, I’m sorry to hear that you had progression on Perjeta. At least it worked for two years, which seems to be the average. I’m hoping to get two to three years on Perjeta before I have to transfer to the TDM-1.

I have to say I’m surprised that Perjeta is not covered in Scotland. I thought the health care system in the UK was pretty good. Is it different from region to region? I can understand by TDM-1 isn’t covered (although it should be), but I can’t understand why Perjeta isn’t. Is Herceptin covered at least?

My oncologist always decides my treatment for me before discussing it with me. She just comes in and tells me what drug she will be giving me next, and I have to research it on my own and then ask her questions at my next appointment. I’ve since been researching drugs on my own, which I have discussed with her, but I don’t’ think she likes that. She’s referred to “Dr. Internet” a few times, and not in a good way. I have made it very clear though that I was to be involved in all decision process, and, that I want a copy of all of my test results, and they told me that they would keep me informed. We shall see.

I think the TDM-1 is the best route for you to go right now, and, even if you get the placebo, you’ll at least be getting the TDM-1. I’ve read that on average, it works for about two years, which is the same as Perjeta. By then there may be a new drug on the market. I’ve also heard that there side-effects are not that bad from TDM-1. If you get the immuno drug, you’ll have to let us know what the side effects are.

I hope you like the trial doctor, and that he/she is a little more informative than your current oncologist. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Hi Tiffany
Thanks for reply!

Perjeta is a trial drug only at the moment in my area. I was lucky to get on trial of it 4 years ago.
Herceptin is standard so available to all.
Kadcyla is also not available mainly because of cost. I want Kadcyla and only way to get it in my area of Scotland is this trial!
I see new Doctor tomorrow and have been told he is very nice!! Think I might have met him before when my current Oncologist was on holiday. Fingers crossed it goes well. Tumour test results might not be back from Germany (Trial lab there) so this might delay decision.
Juls

Re: Need input!
 

I'm keeping my fingers crossed for you, Juls.

Amy

Re: Need input!
 

Thanks Amy
I'll update when I have more info re this new treatment & trial. Got appt tomorrow with Oncologist & bone scan on Friday.
Juls

Re: Need input!
 

Juls, I hope you meeting with the new oncologist goes well today. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Thanks Tiffany
It seemed to go well today. All my questions answered directly and with no hesitation. As I expected - no real alternative offered. Once I've got my head round all this I'll update!
Have another long day tomorrow as I have bone scan.
Haven't changed my mind - think this is still best for me at the moment.
Apparently the drugs available as standard here are getting less and less- so have to get on this trial!
Juls

Re: Need input!
 

I’m glad everything went well, and that the oncologist answered all of your questions. It’s sad that the drugs available as standard care where you live are getting less. You would think it would be the opposite, and that with all of the new drugs on the market, you would have more options, not less. Can people at least pay for the drugs not covered by your medical care if they can afford it? I know that only a select few can afford to take these drugs on a regular basis, but they should at least at the option. It’s too bad. I’m really glad that this trial is available for you, and I hope everything works out for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Hi
Bone scan done on Friday.
Have been told I will probably need another CT - amongst other tests.
Off all treatment for 4 to 5 weeks - For some reason Onc not overly concerned about this! He seems to think if met grows when off treatment it grows!!
Just realised today is 4 years exactly from original diagnosis. It's that lucky 13 again!
Geez!!

Re: Need input!
 

Hi Juls,

I’m glad that you’re getting more tests done. That way, you’ll know exactly what you’re dealing with when you start the trial. Don’t worry too much about not getting treatment for four to five weeks. My doctor told me that for most people, the cancer will not grow in such a short period of time. It will only happen if you have an aggressive cancer, which is what she keeps telling me I have. I think you’ll be okay, and you have your daughter’s wedding to keep you busy until then!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Thanks Tiffany.
Oncologist not overly concerned re growth but I don't know him well so don't know his work style.
My previous Oncologist seemed to go looking for issues even when reports said otherwise!
This liver met has appeared in less than 12 weeks on a Ct - & already at 2.5 cm. Which makes me think it was missed in October scan or is fast growing.
I commented on the fact that it was regrowth of original tiny liver met that should have been ablated 3 1/2 years ago. ( It wasn't done because of delay between Onc & liver specialist & by time replies received I had started chemo)
My new Onc then said he doesn't believe in doing any type of liver ablation. So if I don't get on trial , ablation is also out! A bit disappointed in this as I'm sure many ablations are successful.

This trial is a phase 2 with only 200 places worldwide. There is already 1 Lady on it in my area. Fingers crossed that I'm 2nd!!

Re - the wedding arrangements - exhausting!! In all ways.

Re: Need input!
 

Juls, I know how you feel. My oncologist is not overly concerned with the “pimples” that have grown along my scar, and she thinks they are just scar tissue, but is monitoring them for now. I, of course, am hesitant to believe that since that’s what they told me the last time, and it turned out to be cancer. Her mentality is that if it is cancer, it wouldn’t change my treatment plan anyway, and that the chemo should get it. I, however, want to know if it’s cancer, as that means it grew back while I was on a chemo break, which means the Perjeta and Herceptin don’t work for me without chemo.

I think that you are right, and that your liver met was missed in October. Let’s hope that’s the case, and that it’s not fast growing. Let’s hope you get on this trial so that you can get the drugs you need to shrink that liver met! In the meantime, try to enjoy life. I know that’s easier said than done!



¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Need input!
 

Keep us posted, Juls! Keeping my fingers crossed for you.

Amy

Re: Need input!
 

Thanks Amy
I am still waiting! Doesn't look like I will be starting next Thursday!
Juls

Re: Need input!
 

On Long Island (NY) I had two additional oncologist's. One in Manhattan. One in Westchester. Both requested I bring CTs to them for their radiologists to review.

This was 1999. All my many CTs were STABLE showing same tumors in liver. I had multiple tumors throughout liver too many to count from the getgo. So what they saw was what remained. After Taxotere 9 mnths and Herceptin 7 months at that time.

I got copies of MY Ct's which we all have a right to, from the Imaging Center and I subsequently collected copies after every CT (waiting back in waiting room for 10 minutes to get them).

I took the CTs to both oncs who each had their radiologist read them.

Both independent radiologists who did not know each other (one in Manhattan with Mt. Sinai), one in Westchester with radiologist previously from Sloan Kettering) -- said the same thing.

WHAT I AM LOOKING AT IS NOT TUMORS. THEY LOOK MORE LIKE NECROTIC TISSUE. THEY ARE CYST-LIKE, FILLED WITH FLUID.

Both radiologists said -- I WAS STABLE WITH NO EVIDENCE OF DISEASE.

From that moment on I decided to listen to radiologist #2 and #3.

I have remained STABLE WITH NO EVIDENCE OF DISEASE SINCE APRIL OF 1999.

I remained on Herceptin till 2008.

Been off tx since.

Still STABLE.

Still happy.


I would have insisted on a biopsy before tx. It is our right.

I see you write you have no choice and I remember thinking when I first saw you write those words it didn't sit well with me.

Forgive me for being blunt, but we always have a choice. We are talking about our body and our life !

I informed my oncs that I was a part of the team. I was a part of the decision making.

I was moved to say that because one onc had made a decision to give me more Taxotere than the stated, conventional protocol at the time (1998/1999).

I also had a Florida onc. I spent half the time on Long Island and half the time in Boca. I carried a FLOW SHEET from onc to onc, to keep everyone on the same page.

When I got to Boca Dec of 1998 I felt like total crap. I could barely walk (I shuffled and kept tripped as I couldn't lift my leg/foot enough to clear the floor) and I could barely speak above a whisper.

I had a pleural effusion and a peri cardial effusion from the Taxotere among many awful side effects that were painful and debilitiating.

My Boca onc looked at the flow sheet and said OH NO WONDER YOU FEEL AS YOU DO. YOU HAD AN EXTRA WEEK OF TAXOTERE THAT YOU WEREN'T SUPPOSED TO HAVE. NO BODY CAN TAKE THAT MUCH TAXOTERE.

When I got home I called my very much loved Long Island onc and was told by his nurse that well DOCTOR DECIDED YOU WERE DOING SO WELL (WITH SHRINKAGE) THAT HE WOULD GIVE YOU AN EXTRA WEEK.

That should have been discussed !! Well, it was the doctor's decision.

NO. NO. NO. I am a part of the decision making panel. I am on the team !!

And I made that clear to all my oncs. As I say, we were talking about my body and my life. I may have chosen or been persuaded to do the same thing but I should have been given the choice.

That's my take.

I don't mean to be blunt or rude. Forgive me if I sound it. But I feel passionately about this. And yes, I am outspoken. I feel it's my responsibility to share what I've learned with friends. That's what good friends do. Hell, I would share my thoughts with strangers. You can always ignore me. Just hear me out.

I love you, Juls, and I love you all.

I am always on YOUR side! Always !!

Hugs to all,
Andi

Re: Need input!
 

Hi Andi
Thanks for your reply.

As you know I was not happy with decision (re Xeloda & Zometa) last year when bone met found & told Onc so. I felt the decision was made without me being included & I was never 100% that Xeloda was right for me! I felt that as I am high Er+ & Pr+ that this was not being treated -Xeloda and an AI can't be given together (I did take it for 12 months. Liver met re-grew in same place over last 11 weeks.) It was just a gut reaction it wasn't right for me. I know it works for many others. They offered nothing else and I felt I had no option but to take it.
Yet here I am again - walking into ward 3 weeks ago unaware CT showed progression & not knowing that they had already had a meeting regarding my treatment. Nurse looking uncomfortable and telling me she didn't know whether to call and tell me over the phone priot to my appt. because we had never discussed protocol. Rubbish - she has called numerous times! This trial was only option given. Yes - I did ask for other options! Both Oncologists saying that this is best option. My current Onc mentioned an AI to tide me over until after my Daughters wedding and then they would look at me again (Guessing it would be another chemo) but trial would then be closed..This trial includes Kadcyla and this is only way to get it here. Apparently the drugs available in my area are getting less and less mainly due to cost. Even if they apply to Health Board for Kadcyla outwith trial I have a 99% chance of not getting it. So seems pointless.
I got a call today re Ct and Echo - got appt. for tomorrow 1st thing. Got them to add on blood tests as well to save a double journey. Doesn't look like I will start this week - more likely next Thursday. If I don't carry this PD ligand(?) not sure what will happen.

This Phase 2 trial is only allowing about 200 worldwide & it closes in a few weeks. If I do any kind of treatment (AI,Ablation,chemo etc.) or if I delay I am excluded. So between a rock and a hard place!!"
Trial is an immunotherapy drug ( 2 in 3 chance of getting it) and Kadcyla ( all patients get it)
Will update when I get any other info.
Re - Biopsy - not needed at moment for trial. I asked for ablation but told no as I would be excluded from trial plus new Onc. doesn't believe in ablation.
Is it just me!!
Juls

Re: Need input!
 

Had Ct and Echo today.
Heart fine!
CT - got to wait for report. Normally CT scan is of chest,abdomen and pelvis. Today it also included head. Never had that before & wish I had been told in advance.

Met new Nurse for 1st time. Trial blood tests and ECG done. Found out that the 1st patient on trial started last week & already another 4/5 being considered.
I asked if she knew of any options if I didn't get on this trial. Her reply was another chemo!
Did find out that tumour test back and results good for trial.
The downside is they say I can't start for another week. Which means 5 weeks since last treatment.

Re: Need input!
 

Yesterday I started new immunotherapy drug trial.
Also got CT report -
Brain - OK!
Liver - lesion grown 1.2 cm in a few weeks! A bit concerned about that.
Fortunately only change is in liver and it is in exactly the same spot as 4 years ago.

Thought I was off treatment too long but met another Lady waiting to start same trial who has been off treatment since beginning of January. She can't start trial for another 1 to 2 weeks!

Started at 12 - got out at 5 pm. No idea if given placebo or immuno drug. Had a bit of tightness in forehead and lower back when 1st drug given but that was all.

New oncologist questioned me about right hip as Ct report went into great detail about "hip fracture" Apparently 2 radiologists studied the scan. Had to give him whole scenario of last years panic. That was good enough for him. He couldn't understand how if I had major problem with hip I was not in pain or limping!
So far today- feel fine. Long may it last!
Juls

Re: Need input!
 

I’m glad your brain is okay Juls. I have my second brain MRI in a few weeks, and I hope it’s clear!

Sorry to hear that your liver met grew so much in the last few weeks. You’re on treatment now though, and I hope the TDM-1 gets rid of it. Even if you don’t get the immunotherapy drug, at least you’re getting that!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled

Re: Need input!
 

Hi All

Have been on this trial with Kadcyla & Tecentriq/or placebo for 6 months.
Liver met reduced to under 7 mm on CT 4 weeks ago.(It was 3.5 cm at start of trial)
Side effects change every cycle but none are terrible.

Hit a problem last week as bilirubin too high and as per trial protocol I was not allowed 10th cycle. Wasn't expecting that!

Oncologist says he is not worried & I've not to worry either!
Next cycle to be in 3 weeks. Would have been happier if it was this week

Has anyone else had this on Kadcyla?

Juls

Re: Need input!
 

Jules

Tecentriq is not an anti Her 2 Neu drug. It is a PD1 inhibitor like Kaytruda (pembrolizumab).It can cause immune related side effects like imune related hepatitis, colitis etc. I think the oncologist is just being cautious.

Paul

Re: Need input!
 

Hi Paul

Thanks for reply.
You are probably right about oncologist being cautious.

Just read info on immune related hepatitis so would prefer not to go there! I have a 1 in 3 chance of being on Tecentriq.

Think I'll just take the break & hope it clears all side effects so I can get 10th cycle & many more.

Thanks again Paul

Juls

Re: Need input!
 

Another long day at hospital.

Only half of blood test came back in morning - the important result (bilirubin) held up in bio-chemistry lab as machinery broke down! 6 hours later told that I could have treatment as bilirubin down to 27. (max allowed is 30 and under)

It seems that the 3 of us on the trial have all hit problems in last 3-6 weeks. We are all on different cycles - 1 on 5th cycle, 1 on 8th and myself on 9th.
1 had treatment withheld for 3 weeks because of severe pain.
1 for inflammation. So she has decided to continue with Kadcyla only & drop trial drug - but remains in the trial!
& me with high bilirubin.

10th cycle received. Fingers crossed.

Anyone-else on this trial?

Juls

Re: Need input!
 

Fingers crossed for you, Juls!

Carol Ann

Re: Need input!
 

I'm currently on TDM1 and Keytruda. Currently stable

Re: Need input!
 

Fingers crossed that things stay good for you, Juls.

Re: Need input!
 

Thanks Traci
So far - so good!!

How is H & P going?

Re: Need input!
 

Pretty smoothly for the most part. GI issues and the itch they say is not related to Perjeta and is not a neuropathy...even though it follows a nerve up my left arm and across my collar bone. I'll take it though! It's all worth it to keep living and breathing. I am incredibly fortunate to be well and NEAD for two years. Hooray for us!!!

Re: Need input!
 

Good to know.
I had H & P on a trial for 20 months. Found it ok to do - but I was the only one not to have the itch! Most of the ladies said once off perjeta - itch stopped!

Juls

Re: Need input!
 

Well - this trial is up and down!
I'm off treatment again as bilirubin up. Only plus this time is that if bilirubin under 30 next week I should get treatment.
So far I haven't been to bad but others having inflammation, joint pain and immune system side effects.

Re: Need input!
 

Hi Valleygirl
How are you finding TDM-1 and Keytruda?
It seems similar to trial I'm on - TDM-1 & Tecentriq (Targets PDL-1) or placebo

Juls

Re: Need input!
 

Praying the Bilirubin is down for your next treatment. That combo sounds a bit rough, but if it is working then worth every discomfort. You are one tough lady!

Re: Need input!
 

Hi Laurel
Yes- hope it comes down! Will really be annoyed if it doesn't!
Doctor now wondering if I have naturally higher bilirubin!

Have upped intake of red fruit/veg, water and coffee!
Didn't know that coffee helps bring bilirubin down & here I was trying to be good & cut it down a bit!!

Anybody looking for me I'll be in Costa!

Juls

Re: Need input!
 

Have a blast. You deserve a break. I am always thinking of you and all our members in active treatment. I admire the strength of those in trials that push the race for a cure one step closer.