› Forums › General Melanoma Community › Doctor Appt. Prep for Test Results
- This topic has 36 replies, 4 voices, and was last updated 8 years ago by
Maria C.
- Post
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- April 19, 2016 at 8:31 pm
Hi all –
Tomorrow I get the results from the MRI & CT scan I took yesterday and am quite nervous about them. I'm paricularly concerned about the MRI, since 2 months ago was the first time they came back clean with no brain mets since all this began last summer.
For some quick background, I've taken all 4 ipi/nivo combo infusions during which time I've also had 2 gamma knife procedures. I've had severe reactions to the combo, including inflammations of the eye, liver, and lungs (with steroid treatment for each), full-body skin rash, severe loss of hair (3/4's out, with no signs of stopping), and now signs of vitiligo (white eyelashes, eyebrows, and now patchy 2-toned skin). All that said, I am NOT complaining because I'm already seeing results towards remission and I'll do whatever is needed to "battle the beast" and prepare for whatever battles lie ahead.
In preparing for my follow-up appt. tomorrow, my questions are:
1. Is there anything I can do or take to reverse the hair loss?
2. Ditto for the vitilogo?
3. Is there any proof that the Nivo maintenance protocol is tied to better stats for patients, and if so, where is this report specifically?
If anyone on this board has had these issues and have any answers or advice, please share. And also, should I be asking any other questions for tomorrow?
As always, thanks MPIP for this "think tank" patient forum!!
- Replies
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- April 19, 2016 at 8:55 pm
Good luck at your appointment, Maria. To my knowledge there is nothing one can do about hair loss or vitiligo. There have been anecdotal reports of hair returning after treatment is complete. Vitligo is what it is…once you have it…which I do. Don't love all my white blotches, but I do like being here and vitiligo is actually a good prognostic sign. Here is an article about that with links to others within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html
Whether to continue nivo (or pembro) – and for how long – is the 40 zillion dollar question. Dr. Weber has said in interviews and articles (and to me personally) that he thinks studies are giving it longer than needed. In fact, he doubts the folks in my study needed it the 2 1/2 years we took it and many take it even longer. He and many other feel that the body's response will max out and more drug will provide nothing more in the way of a response, but would have the potential to trigger more side effects. Other researchers feel differently. Bottom line….the data is not yet there to tell us absolutely what one should do. Ratties in trials that continue meds to progression will have to compare results to my fellow ratties and others who took the meds for only a circumscribed time in order to tell the tale (or is it tail???)! Hopefully, soon those in the know will posit clearer answers….possibly as soon as ASCO.
Wishing you my best, celeste
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- April 19, 2016 at 8:55 pm
Good luck at your appointment, Maria. To my knowledge there is nothing one can do about hair loss or vitiligo. There have been anecdotal reports of hair returning after treatment is complete. Vitligo is what it is…once you have it…which I do. Don't love all my white blotches, but I do like being here and vitiligo is actually a good prognostic sign. Here is an article about that with links to others within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html
Whether to continue nivo (or pembro) – and for how long – is the 40 zillion dollar question. Dr. Weber has said in interviews and articles (and to me personally) that he thinks studies are giving it longer than needed. In fact, he doubts the folks in my study needed it the 2 1/2 years we took it and many take it even longer. He and many other feel that the body's response will max out and more drug will provide nothing more in the way of a response, but would have the potential to trigger more side effects. Other researchers feel differently. Bottom line….the data is not yet there to tell us absolutely what one should do. Ratties in trials that continue meds to progression will have to compare results to my fellow ratties and others who took the meds for only a circumscribed time in order to tell the tale (or is it tail???)! Hopefully, soon those in the know will posit clearer answers….possibly as soon as ASCO.
Wishing you my best, celeste
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- April 19, 2016 at 10:31 pm
Celeste, thanks so much for your informed insight!! (As always!!!)
Since you have a strong pulse on this issue, can you tell me if you've come across data that point to results for those who got kicked off the combo vs. those who finished and then took Nivo. In other words, have they published stats on OS and PFS of those who were kicked off due to severe side effects, vs. those who made it through into the Nivo maintenance (for however long).
And was any data collected on those who finished the 4 combo infusions, went on to Nivo maintenance, and then were kicked off the Nivo-only treatment because of cumulative side effects?
I just don't understand how Nivo maintenance was even decided on to begin with. I don't understand why a trial of just the 4 combo infusions alongside a 4 combo + Nivo maintenance wasn't part of the research…?
Please correct me if I'm missing something.
Thank you!!!
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- April 19, 2016 at 10:58 pm
This slide gives at least a partial answer to your questions: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who stopped the combo had a complete or partial response…"
Along similar lines regarding the combo….look at section regarding immunotherapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
For your comparator…there is only the published data on nivo alone….though there are sequential reports on ipi and nivo (some folks taking ipi followed by nivo..others nivo followed by ipi)…all on my blog…but that is not exactly the same thing.
I have one other point….but the spam filter will not let me put up more than 2 links in one post. But folks can sell pass ports at all times!!! I'll make another post. c
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- April 19, 2016 at 10:58 pm
This slide gives at least a partial answer to your questions: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who stopped the combo had a complete or partial response…"
Along similar lines regarding the combo….look at section regarding immunotherapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
For your comparator…there is only the published data on nivo alone….though there are sequential reports on ipi and nivo (some folks taking ipi followed by nivo..others nivo followed by ipi)…all on my blog…but that is not exactly the same thing.
I have one other point….but the spam filter will not let me put up more than 2 links in one post. But folks can sell pass ports at all times!!! I'll make another post. c
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- April 19, 2016 at 10:58 pm
This slide gives at least a partial answer to your questions: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who stopped the combo had a complete or partial response…"
Along similar lines regarding the combo….look at section regarding immunotherapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
For your comparator…there is only the published data on nivo alone….though there are sequential reports on ipi and nivo (some folks taking ipi followed by nivo..others nivo followed by ipi)…all on my blog…but that is not exactly the same thing.
I have one other point….but the spam filter will not let me put up more than 2 links in one post. But folks can sell pass ports at all times!!! I'll make another post. c
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- April 19, 2016 at 11:02 pm
Trials are created by pharmaceutical companies in concert with the NIH and FDA. Researchers and institutions have varying degrees of input. They are often based on arcane reasoning, old school methodology, and territory. Rational thinking and common sense is frequently hard to come by. Here is an op-ed, if you will: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
wishing you my best. c
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- April 19, 2016 at 11:02 pm
Trials are created by pharmaceutical companies in concert with the NIH and FDA. Researchers and institutions have varying degrees of input. They are often based on arcane reasoning, old school methodology, and territory. Rational thinking and common sense is frequently hard to come by. Here is an op-ed, if you will: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
wishing you my best. c
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- April 19, 2016 at 11:02 pm
Trials are created by pharmaceutical companies in concert with the NIH and FDA. Researchers and institutions have varying degrees of input. They are often based on arcane reasoning, old school methodology, and territory. Rational thinking and common sense is frequently hard to come by. Here is an op-ed, if you will: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
wishing you my best. c
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- April 21, 2016 at 6:10 pm
Celeste, I don't know how you do it – there is so much data and research to slog through and I'm so very grateful for your time and thought helping the rest of us get straight to our concerns and try to make sense of it all. Thank you, thank you, thank you!
So what I'm understanding from the above, is if 68% of those who had to stop the combo had some type of response (partial or complete), then severe side effects are a strong prognostic factor. Which, bringing it back to my case, supports my argument that it's okay to take a break from any further immunotherapy at this point since I already experienced severe side effects.
Since I'm not on a clinical trial because the drugs have been FDA approved, there's more flexibility and patients have more of a say in our treatment plan. It's not all about clinical trials anymore, but what makes sense on an individual basis, yes?
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- April 21, 2016 at 6:10 pm
Celeste, I don't know how you do it – there is so much data and research to slog through and I'm so very grateful for your time and thought helping the rest of us get straight to our concerns and try to make sense of it all. Thank you, thank you, thank you!
So what I'm understanding from the above, is if 68% of those who had to stop the combo had some type of response (partial or complete), then severe side effects are a strong prognostic factor. Which, bringing it back to my case, supports my argument that it's okay to take a break from any further immunotherapy at this point since I already experienced severe side effects.
Since I'm not on a clinical trial because the drugs have been FDA approved, there's more flexibility and patients have more of a say in our treatment plan. It's not all about clinical trials anymore, but what makes sense on an individual basis, yes?
-
- April 21, 2016 at 6:10 pm
Celeste, I don't know how you do it – there is so much data and research to slog through and I'm so very grateful for your time and thought helping the rest of us get straight to our concerns and try to make sense of it all. Thank you, thank you, thank you!
So what I'm understanding from the above, is if 68% of those who had to stop the combo had some type of response (partial or complete), then severe side effects are a strong prognostic factor. Which, bringing it back to my case, supports my argument that it's okay to take a break from any further immunotherapy at this point since I already experienced severe side effects.
Since I'm not on a clinical trial because the drugs have been FDA approved, there's more flexibility and patients have more of a say in our treatment plan. It's not all about clinical trials anymore, but what makes sense on an individual basis, yes?
-
- April 19, 2016 at 11:03 pm
Hi Maria, to get your hands on the BMS data of the combination would probably require " A Mission Impossible" like effort. This week Dr. Hodi released some of the long term Nivolumab data and I heard that he will be the one to give an up date on checkmate 067 ( Ipi/ Nivo combination trial) at ASCO in late May and early June. With the amount of money riding on these new Immunotherapy drugs and how fast BMS can get them safely to market, I highly doubt they will share raw data with anyone unless it supports drug approval for big pharma. On the other hand the leading hospital that treat the patients would probably have data on their own patients. My understanding of the combination of Ipi and Nivo and the way the schedule is layed out has to do with how the indivual drugs work and were developed. Each drug works in taking off the brakes of the immune system but both work in different ways. I have also wondered how they came up with 2 years of Nivo treatments and only 4 treatments every 3 weeks for ipi? I have been part of the checkmate 067 trial for 27 months and not knowing exactly what I have been given ( part of the price of being a rattie) is sometimes just a little frustrating. There are 949 other members of the checkmate 067 club in the same boat of not knowing which of the three arms of the trial they are on. The only way to find out is if you progress, then your Oncologist can ask BMS to unblind your data. I too developed the lovely white patches on my skin, and like Celeste said in her post to you, that it comes as a positive sign of the drug or drugs working. Best of luck with your treatments. Ed
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- April 19, 2016 at 11:03 pm
Hi Maria, to get your hands on the BMS data of the combination would probably require " A Mission Impossible" like effort. This week Dr. Hodi released some of the long term Nivolumab data and I heard that he will be the one to give an up date on checkmate 067 ( Ipi/ Nivo combination trial) at ASCO in late May and early June. With the amount of money riding on these new Immunotherapy drugs and how fast BMS can get them safely to market, I highly doubt they will share raw data with anyone unless it supports drug approval for big pharma. On the other hand the leading hospital that treat the patients would probably have data on their own patients. My understanding of the combination of Ipi and Nivo and the way the schedule is layed out has to do with how the indivual drugs work and were developed. Each drug works in taking off the brakes of the immune system but both work in different ways. I have also wondered how they came up with 2 years of Nivo treatments and only 4 treatments every 3 weeks for ipi? I have been part of the checkmate 067 trial for 27 months and not knowing exactly what I have been given ( part of the price of being a rattie) is sometimes just a little frustrating. There are 949 other members of the checkmate 067 club in the same boat of not knowing which of the three arms of the trial they are on. The only way to find out is if you progress, then your Oncologist can ask BMS to unblind your data. I too developed the lovely white patches on my skin, and like Celeste said in her post to you, that it comes as a positive sign of the drug or drugs working. Best of luck with your treatments. Ed
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- April 21, 2016 at 6:20 pm
Ed – thanks for the laugh (I've come up with several "Mission Impossible" goals in my life, my family would get a kick out of that comment!). Celeste's "op-ed" piece above also explains why we as patients can't get at the raw data under the shadow of Big Pharma, which has really been frustrating me, and I appreciate your suggestion that maybe we can get some type of access to a microcosm of the info at our respective hospitals.
Very grateful to be a member of the "white patches" club…my husband loves my white eyebrows and lashes because he says "that's nothing, I just want you here…"
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- April 21, 2016 at 6:20 pm
Ed – thanks for the laugh (I've come up with several "Mission Impossible" goals in my life, my family would get a kick out of that comment!). Celeste's "op-ed" piece above also explains why we as patients can't get at the raw data under the shadow of Big Pharma, which has really been frustrating me, and I appreciate your suggestion that maybe we can get some type of access to a microcosm of the info at our respective hospitals.
Very grateful to be a member of the "white patches" club…my husband loves my white eyebrows and lashes because he says "that's nothing, I just want you here…"
-
- April 21, 2016 at 6:20 pm
Ed – thanks for the laugh (I've come up with several "Mission Impossible" goals in my life, my family would get a kick out of that comment!). Celeste's "op-ed" piece above also explains why we as patients can't get at the raw data under the shadow of Big Pharma, which has really been frustrating me, and I appreciate your suggestion that maybe we can get some type of access to a microcosm of the info at our respective hospitals.
Very grateful to be a member of the "white patches" club…my husband loves my white eyebrows and lashes because he says "that's nothing, I just want you here…"
-
- April 19, 2016 at 11:03 pm
Hi Maria, to get your hands on the BMS data of the combination would probably require " A Mission Impossible" like effort. This week Dr. Hodi released some of the long term Nivolumab data and I heard that he will be the one to give an up date on checkmate 067 ( Ipi/ Nivo combination trial) at ASCO in late May and early June. With the amount of money riding on these new Immunotherapy drugs and how fast BMS can get them safely to market, I highly doubt they will share raw data with anyone unless it supports drug approval for big pharma. On the other hand the leading hospital that treat the patients would probably have data on their own patients. My understanding of the combination of Ipi and Nivo and the way the schedule is layed out has to do with how the indivual drugs work and were developed. Each drug works in taking off the brakes of the immune system but both work in different ways. I have also wondered how they came up with 2 years of Nivo treatments and only 4 treatments every 3 weeks for ipi? I have been part of the checkmate 067 trial for 27 months and not knowing exactly what I have been given ( part of the price of being a rattie) is sometimes just a little frustrating. There are 949 other members of the checkmate 067 club in the same boat of not knowing which of the three arms of the trial they are on. The only way to find out is if you progress, then your Oncologist can ask BMS to unblind your data. I too developed the lovely white patches on my skin, and like Celeste said in her post to you, that it comes as a positive sign of the drug or drugs working. Best of luck with your treatments. Ed
-
- April 19, 2016 at 10:31 pm
Celeste, thanks so much for your informed insight!! (As always!!!)
Since you have a strong pulse on this issue, can you tell me if you've come across data that point to results for those who got kicked off the combo vs. those who finished and then took Nivo. In other words, have they published stats on OS and PFS of those who were kicked off due to severe side effects, vs. those who made it through into the Nivo maintenance (for however long).
And was any data collected on those who finished the 4 combo infusions, went on to Nivo maintenance, and then were kicked off the Nivo-only treatment because of cumulative side effects?
I just don't understand how Nivo maintenance was even decided on to begin with. I don't understand why a trial of just the 4 combo infusions alongside a 4 combo + Nivo maintenance wasn't part of the research…?
Please correct me if I'm missing something.
Thank you!!!
-
- April 19, 2016 at 10:31 pm
Celeste, thanks so much for your informed insight!! (As always!!!)
Since you have a strong pulse on this issue, can you tell me if you've come across data that point to results for those who got kicked off the combo vs. those who finished and then took Nivo. In other words, have they published stats on OS and PFS of those who were kicked off due to severe side effects, vs. those who made it through into the Nivo maintenance (for however long).
And was any data collected on those who finished the 4 combo infusions, went on to Nivo maintenance, and then were kicked off the Nivo-only treatment because of cumulative side effects?
I just don't understand how Nivo maintenance was even decided on to begin with. I don't understand why a trial of just the 4 combo infusions alongside a 4 combo + Nivo maintenance wasn't part of the research…?
Please correct me if I'm missing something.
Thank you!!!
-
- April 19, 2016 at 8:55 pm
Good luck at your appointment, Maria. To my knowledge there is nothing one can do about hair loss or vitiligo. There have been anecdotal reports of hair returning after treatment is complete. Vitligo is what it is…once you have it…which I do. Don't love all my white blotches, but I do like being here and vitiligo is actually a good prognostic sign. Here is an article about that with links to others within it: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/vitiligoagain-associated-with-response.html
Whether to continue nivo (or pembro) – and for how long – is the 40 zillion dollar question. Dr. Weber has said in interviews and articles (and to me personally) that he thinks studies are giving it longer than needed. In fact, he doubts the folks in my study needed it the 2 1/2 years we took it and many take it even longer. He and many other feel that the body's response will max out and more drug will provide nothing more in the way of a response, but would have the potential to trigger more side effects. Other researchers feel differently. Bottom line….the data is not yet there to tell us absolutely what one should do. Ratties in trials that continue meds to progression will have to compare results to my fellow ratties and others who took the meds for only a circumscribed time in order to tell the tale (or is it tail???)! Hopefully, soon those in the know will posit clearer answers….possibly as soon as ASCO.
Wishing you my best, celeste
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- April 20, 2016 at 5:43 pm
Hi Maria! How were the results?! I’m thinking about you and truly hoping for good news!!I’ve had stress related hair loss for years now, and have experimented quite a bit with suppliments. I can’t say if these tips will help or not, but it may help when your hair does start to regrow.
The absolute BEST thing to help regrow my hair has been biotin. Lots and lots of biotin. It’s a B vitamin, and water soluble, so you can’t over-do it like with fat soluble vitamins. I take a hair, skin, and nails suppliment that has 5000% DV of biotin and tons of other B vitamins. Some poeple also swear by nettle or saw palmetto. I haven’t tried the nettle, but did try the saw palmetto. You really have to be careful with that one, though, because it can mess with your hormones. It’s meant to decrease the level of testosterone in your system, so it made me break out like a teenager.
There are plenty of homemade masks you could make, using honey, vit. E, aloe, olive or jojoba oil, and essential oils. I find this tedious, but its fun to play around with and if you have the time, go for it. I also add rosemary essential oil to my Trader Joe’s shampoo (which is predominantly essential oils anyway), and that’s helped quite a bit. I always have lots of new baby growth.
Keep us updated!!
-
- April 20, 2016 at 5:43 pm
Hi Maria! How were the results?! I’m thinking about you and truly hoping for good news!!I’ve had stress related hair loss for years now, and have experimented quite a bit with suppliments. I can’t say if these tips will help or not, but it may help when your hair does start to regrow.
The absolute BEST thing to help regrow my hair has been biotin. Lots and lots of biotin. It’s a B vitamin, and water soluble, so you can’t over-do it like with fat soluble vitamins. I take a hair, skin, and nails suppliment that has 5000% DV of biotin and tons of other B vitamins. Some poeple also swear by nettle or saw palmetto. I haven’t tried the nettle, but did try the saw palmetto. You really have to be careful with that one, though, because it can mess with your hormones. It’s meant to decrease the level of testosterone in your system, so it made me break out like a teenager.
There are plenty of homemade masks you could make, using honey, vit. E, aloe, olive or jojoba oil, and essential oils. I find this tedious, but its fun to play around with and if you have the time, go for it. I also add rosemary essential oil to my Trader Joe’s shampoo (which is predominantly essential oils anyway), and that’s helped quite a bit. I always have lots of new baby growth.
Keep us updated!!
-
- April 21, 2016 at 6:38 pm
Hi Lauren –
Thanks for asking about my results – I did get good news!! Thank you for your positive thoughts!! Another MRI & CT scan free of any new tumors, and the one in my pelvic area that shrank with each subsequent scan is now completely gone! However, one of the brain mets tumors is inflamed in its death stage after the gamma knife, there's a 1 cm mass, so am waiting to hear what the treatment, if any, will be needed for that.
But overall, my doctor and assistant and I were all smiles, and I finally feel like I can breath again as this is the second set of test results that are negative for new mets….!! And with that other small one completely gone, I guess I'm now officially NED?!!
My oncologist also mentioned Biotin yesterday so I will definitely try it and keep my fingers super crossed. my hair loss is the one super visible outside sign that I need to address one way or another before going back to work. I will also pick up the Trader Joe's shampoo you mentioned, as I'm heading there this week anyway (I'm out of cashew butter 🙂
Also, BTW, happy to meet a fellow Frank Sinatra fan – saw your cat's name on your blog. I listen to "Seriously Sinatra" and have been a fan since childhood … can't tell you how many times "That's Life!" has helped me put mine in perspective.
Cheers –
-
- April 21, 2016 at 6:38 pm
Hi Lauren –
Thanks for asking about my results – I did get good news!! Thank you for your positive thoughts!! Another MRI & CT scan free of any new tumors, and the one in my pelvic area that shrank with each subsequent scan is now completely gone! However, one of the brain mets tumors is inflamed in its death stage after the gamma knife, there's a 1 cm mass, so am waiting to hear what the treatment, if any, will be needed for that.
But overall, my doctor and assistant and I were all smiles, and I finally feel like I can breath again as this is the second set of test results that are negative for new mets….!! And with that other small one completely gone, I guess I'm now officially NED?!!
My oncologist also mentioned Biotin yesterday so I will definitely try it and keep my fingers super crossed. my hair loss is the one super visible outside sign that I need to address one way or another before going back to work. I will also pick up the Trader Joe's shampoo you mentioned, as I'm heading there this week anyway (I'm out of cashew butter 🙂
Also, BTW, happy to meet a fellow Frank Sinatra fan – saw your cat's name on your blog. I listen to "Seriously Sinatra" and have been a fan since childhood … can't tell you how many times "That's Life!" has helped me put mine in perspective.
Cheers –
-
- April 22, 2016 at 1:54 pm
Absolutely AMAZING news, Maria!! I’m so excited for you!! Omg just discussing the letters NED must just make your heart jump for joy!The TJ shampoo and conditioner are great (and so cheap!) and have really helped my hair. Hair loss for us ladies is so devistating – it’s like losing a part of you. I admit I’ve cried from a bad haircut before, and seeing my hair going down the drain forced me to realize it’s only hair. If I feel good, that’s what matters.
Yes, I’m a big Sinatra and Rat Pack fan. Like you, I grew up on the stuff and it always puts me in a great mood! So put on some Sinatra and do a happy dance to celebrate the results!!
-
- April 22, 2016 at 1:54 pm
Absolutely AMAZING news, Maria!! I’m so excited for you!! Omg just discussing the letters NED must just make your heart jump for joy!The TJ shampoo and conditioner are great (and so cheap!) and have really helped my hair. Hair loss for us ladies is so devistating – it’s like losing a part of you. I admit I’ve cried from a bad haircut before, and seeing my hair going down the drain forced me to realize it’s only hair. If I feel good, that’s what matters.
Yes, I’m a big Sinatra and Rat Pack fan. Like you, I grew up on the stuff and it always puts me in a great mood! So put on some Sinatra and do a happy dance to celebrate the results!!
-
- April 22, 2016 at 1:54 pm
Absolutely AMAZING news, Maria!! I’m so excited for you!! Omg just discussing the letters NED must just make your heart jump for joy!The TJ shampoo and conditioner are great (and so cheap!) and have really helped my hair. Hair loss for us ladies is so devistating – it’s like losing a part of you. I admit I’ve cried from a bad haircut before, and seeing my hair going down the drain forced me to realize it’s only hair. If I feel good, that’s what matters.
Yes, I’m a big Sinatra and Rat Pack fan. Like you, I grew up on the stuff and it always puts me in a great mood! So put on some Sinatra and do a happy dance to celebrate the results!!
-
- April 21, 2016 at 6:38 pm
Hi Lauren –
Thanks for asking about my results – I did get good news!! Thank you for your positive thoughts!! Another MRI & CT scan free of any new tumors, and the one in my pelvic area that shrank with each subsequent scan is now completely gone! However, one of the brain mets tumors is inflamed in its death stage after the gamma knife, there's a 1 cm mass, so am waiting to hear what the treatment, if any, will be needed for that.
But overall, my doctor and assistant and I were all smiles, and I finally feel like I can breath again as this is the second set of test results that are negative for new mets….!! And with that other small one completely gone, I guess I'm now officially NED?!!
My oncologist also mentioned Biotin yesterday so I will definitely try it and keep my fingers super crossed. my hair loss is the one super visible outside sign that I need to address one way or another before going back to work. I will also pick up the Trader Joe's shampoo you mentioned, as I'm heading there this week anyway (I'm out of cashew butter 🙂
Also, BTW, happy to meet a fellow Frank Sinatra fan – saw your cat's name on your blog. I listen to "Seriously Sinatra" and have been a fan since childhood … can't tell you how many times "That's Life!" has helped me put mine in perspective.
Cheers –
-
- April 20, 2016 at 5:43 pm
Hi Maria! How were the results?! I’m thinking about you and truly hoping for good news!!I’ve had stress related hair loss for years now, and have experimented quite a bit with suppliments. I can’t say if these tips will help or not, but it may help when your hair does start to regrow.
The absolute BEST thing to help regrow my hair has been biotin. Lots and lots of biotin. It’s a B vitamin, and water soluble, so you can’t over-do it like with fat soluble vitamins. I take a hair, skin, and nails suppliment that has 5000% DV of biotin and tons of other B vitamins. Some poeple also swear by nettle or saw palmetto. I haven’t tried the nettle, but did try the saw palmetto. You really have to be careful with that one, though, because it can mess with your hormones. It’s meant to decrease the level of testosterone in your system, so it made me break out like a teenager.
There are plenty of homemade masks you could make, using honey, vit. E, aloe, olive or jojoba oil, and essential oils. I find this tedious, but its fun to play around with and if you have the time, go for it. I also add rosemary essential oil to my Trader Joe’s shampoo (which is predominantly essential oils anyway), and that’s helped quite a bit. I always have lots of new baby growth.
Keep us updated!!
-
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