Triple Negative Stage IV
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Texas Rose
Thanks for this thread. Have been searching on many sites trying to find where I belong and I think this is it.
I have been diagnosed with mets to my lung. 3.5 cm in one lung and smaller ones in the otherlung. Just as someone posted: their oncologist seemed to feel there is no hurry to chemo. So much to tell would really be too long. But now he wants me to go for a Petscan. I had bc about 15 years ago and now again 5 years ago and now this metastis which was found because I had pain in my back.
It is really given me hope reading that most of these ladies have been able to handle the chemo with not too much distress. This is what has me so petrified and I mean petrified. Also I wanted to go for some alternative treatments such as IV Vit C etc and my oncologist said he dosen't beleve in it and where I live I am not sure where I can go to get it without traveling too far. I live in Eastern Pa. But againthis thread had given me much peace of mind about the chemo. Thank you
Rosieo
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Texas
Did you have to have a port put in and did you hair fall out on Taxol and if so how long did it take to fall out.
Thanks Rosieo
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Rosieo....glad we could give you some peace of mind. That is what we all need. We all have questions and worries and just having someone that is a little like us helps!
I have never looked into the alternative medicine so, I don't have any information on that. I do take supplements such as Calcium, Ginger Root, B-complex...but that is the extent of my alternative medicine to chemo. When I started this round of chemo, my ONC told me there would be two reasons she pulls me off the Taxol. One would be it wasn't working and the other would be if the side effects (neuropathy) got too bad! She told me there were other chemo drugs that could take the place of it. You hadn't mentioned....were all your cancer's triple negative?
Julie
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Texas Rose ( what a nice name to go by) When I was diagnosed almost 4 years ago I was ER Positive, Pr positive, and her Negative which they say is the "best" cancer to get. :-) Really!!!!!!!!!!! Never had to do chem.
Now when I had a cat scan it showed mets to the lung. 3.5 cm in one lung, smaller ones in the other lung. When they tested this tumor it shows all negatives!! I have a really long story to tell because I also had breast cancer 15 years ago. I was going to the oncologist with back pain and he sent me for a bone scan which was negative but then he never followed thru with any other tests till just about one month ago and he dosen't seem to be in any hurry for me to start chemo. I asked him about IV Vit C and IPT treatments and he dosen't believe in them so where I live I guess I just go for chemo. which I had
more choices.
Rosieo
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Hey Rosieo, I have had two ports. My first was put in November 2013 with original diagnosis. I then had it removed in February 2015 when I had my expanders removed and implants put in. Then when I was diagnosed as stage IV, I had another port put back in. I think I will just keep this one forever
!With Taxol my hair began to thin by the 2nd treatment...so I decided to just shave it. My hair never really came back as thick as it was before the first round of cancer, so when it started to fall out and get thinner than it was I decided to just shave it. I do have to shave what little stubble I get every week. I did loose all my lashes and eye brows (had new brows tatooed on, and love them) I wear false eyelashes and really no one can tell the difference. I didn't really loose my lashes with my original diagnosis and I used Latise to help them come back when I was done with that set of Chemo. But when they fell out this time around, it was an emotional time for me. I think I was more upset about the lashes than I was the hair.
So is your Doctor putting you on Taxol?
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Hi Warriors,
Been a while. Texas thanks for trying to keep the board alive. I was trying too for a while but got really busy trying to fight this fight and work and take care of myself and my DH as he has had is medical issues as well. Not sure if I updated the last time with my new treatment. Right now doing a study trial with eribulin and so I have been on it since 7/13 so praying it is my ticket to NED. I would love to experience that. Been having some back pain right where my bra is so that hasn't been fun. I think I need new bras. The xeloda I was on for 3 months didn't work too good and I am glad to be off it. It was horrible and did a number on my feet.
Nice to see new folks. More to come...Lucy
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Rosieo I had a port at original diagnosis 2 years ago then it was removed. Started back on chemo at the end of feb this year and did not get a port as I was getting chemo every 3 weeks. Once I switched to weekly taxol I had to get one. My poor veins were not bouncing back ! I was resistant at first but now I'm glad it's there. It took a good month before it was really comfortable to sleep etc.
Wow the neuropathy in my feet is not fun ! I can only wear sketchers with memory foam shoes which can look kinda funny with my dresses lol not sure what I will wear once fall really hits.
I'm almost slick bald now. Ugh. Wore a wig out last omg it's sooo itchy ! Any suggestions on making one more comfortable ?
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Texas Rose: I think my oncologist said Taxol. I must go for a petscan on Tues. and then I guess I will have to start the chemo. I have metatastic breast cancer. You said you got eye brows tatooed on. Tell me more about that.
And again I must mention that this website and connecting with you wonderful ladies have helped me so much with my anxiety. I am a basket case. So so scared. Thanks for all your wonderful posts.
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Laura, with my first treatment I got pretty thin so had to cut hair very short but did not shave it. I did find some great hats and I had a wig that looked just like my hair and it was awesome. I also bought some caps that are thin to wear under your wig so you can check those out. I will see if I can find out the website I ordered then. They have great scarfs too I have several to choose from in various colors.
Rosie I had my port implanted a week before I started using it for treatment. It was more sore for me as they sent me away with no pain meds and said that Tylenol and ibuprofen should be fine. Well please make sure they have something for you because it was very bad pain for me as they had to really dig in the muscle to plant it. Now of course if they handnt perhaps the Tylenol and ibuprofen would have been ok. But I have learned now to hope for the best and plan for the worst I don't care how much it cost me after insurance. My lumpectomy was a piece of cake compared to the port. However I am so glad I have it and it has worked beautifully ever since. I have lost a lot of weight since I started this journey so you can see it more now but no biggie. Will be praying for clear data on the scans and no fear ok?
So can you have eyebrows tattooed on while going through treatment? I have lost a little of my hair on this new drug but not much so I'm stoked about that. My eyebrows are pretty thin so what I have is not really much when I started out. Lol
So does anyone know what the standard treatment is for TNBC? I have been on a couple of study trials and just hoping and praying it's my miracle I'm expecting. I have my treatment tomorrow then my week break WOO HOO!!!
Have a relaxing rest of the night and a restful sleep. As Rosie stated, I'm glad you're all here too!
Lucy
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Hey Lucy...glad to see you back! We missed you! My ONC gave me permission to have the eyebrows tattooed while I was on Chemo. Below is a of them the day they were done. They have lightened a bit since then. I go in for a touch up on the 11th of Sept. The person that did mine was an RN. She was able to use lidacain (sp) because of her nursing license. The only tattooing she does is cosmetic (eyebrows, eyeliner and lips). They were well worth the money!!! I am so glad I don't have to draw them on everyday and hope that if I wipe my brow, I don't wipe them off. Lost those eyelashes also...so now I wear fake eyelashes.
Not sure there is a standard treatment for TNBC....I think each ONC uses what they feel is best. It would be nice if there was a standard treatment and everyone went NED within weeks of going on it. In a perfect world....we can dream and pray!!
Hey Lauralind...only suggestion I have for the wig is to keep the stubble shaved. I am not a winter person, but with 97 - 100 days in Texas the wig gets hot and I am ready for some cooler weather. I use to kick my shoes off and take my bra off first thing when I got home....now the first thing that comes off is the wig
.Hey Rosieo... I am praying for a good scan for you tomorrow. I am also glad that we are all here for each other!!
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Texas
Your eyebrows look great! My brain is so goofy with thinking about this cancer thing everyday I get everything wrong. My Pet scan is Thursday not tomorrow. :-)
Thanks for everyone's support.
Anyone on here does anything such as alternative treatments along with the chemo. Would like to
hear from you.
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Texas...your eyebrows look great. If my onc would approve it I would do it for sure. And the lidacane is a great bonus. Have to keep that in mind if I loose mine again. My treatment now is ok and not loosing hair. I did a little during first cycle but just finished second cycle and no more loss so they told me yesterday I am where I will probably be now. So that made me happy. But as we know we will always be on something so I may not be so lucky next time lol.
Rosie...praying your scans turn out awesome and you can get past the worry and concern. I know we always try not to worry but we are human and still do. I just always pray the whole time and leave it in Gods hands.
As for alternative treatments, that has been high on my radar recently as I have a dear friend who went to school with my DD and she was dx 2 months ago and she has decided not to so chemo or rads and instead is going with a clinic that is gerson certified and is doing their therapy. She is scheduled for surgery to remove tumor in a couple of weeks. She is doing lots of juicing and coffee enamas and taking various supplements. She does not have TNBC but she has an aggressive form of her type. She is 35 and has 4 kids and is a stay at home mom and does home school and has always eaten healthy and she just can't bring herself to do chemo. I know what she is going through as it was the hardest thing for me too. I have always eaten healthy and exercised and I eat organic. But I just didn't feel like I wanted to take a chance with this type of cancer. I am currently using a lot of essential oils now so that is really all I am doing differently I am considering using cbd hemp oil, indole-3-carbinol, EGCG, and increasing my vit D to a larger amount than the 6k I am on now. I need to get this all approved by my onc first. These are the supplements she is on and so I figured I can ask
Have a blessed day warriors...chat soon...Lucy!
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Texas, I don't have stubble. Im pretty much slick bald !
Spirit, I have mixed feelings, I think you said it right there that helps explain my position on this. While I think being as healthy and eating healthy as we can helps our bodies recover from things like chemo etc, it doesn't stop the cancer from happening as evidenced by your friends and your admission that you've always pretty much eaten healthy. I DO think however that supplements can help our fight in this disease. I do take some supplements myself!
I think the standard treatment is AC/T or TAC, which is basically the same thing. And then down the list it goes for mets.
I have a bunch of hats etc, this is my 3rd rodeo with no hair. I don't seem to be handling it emotionally as well as I have before. Sometimes I just want to blend in with the crowd yanno? But that itchiness was horrible and I was sweating under it too. Any ideas on the wig cap would be great ! Ive looked at the internet and not really seen anything. And the mesh thing that looks like pantyhose didn't do a thing, in fact it rolled up lol I did see where someone had cut silk to put in the top of the wig, I just wonder wouldn't that make it slip?
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I was one of the unlucky ones after my initial chemo...my hair never returned like it was before, it was so thin! This is a picture 8 months after TAC. That shiny stuff is my scalp
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So with Stage IV, chemo option was Taxol...so hair loss was a definite. I was like you Lauralind and very emotional about the hair loss this time..in fact I think I spent the whole afternoon crying when it started coming out...figured I would never have hair on my head again. I have grown use to the wigs...but as soon as I walk in the house the wig comes off first, then the shoes and bra!!
Lauralind - is your wig a synthetic or human hair? I do the synthetic wigs with monofilament cap. I have never tried one of the caps that you wear under the wig. Like you, I think the silk would slip.
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Lucy
what is cbd hemp oil? how would you use it.?
Rosie
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Texasrose Its synthetic. I have a couple. Where did you find the hemp oil? You don't live in Colorado LOL
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I ordered some things on the TLC website and I think that is where I ordered the caps from. There was another website I ordered some amazing stretchy scarfs so I need to pull one as I don't recall the name. But they are my favorite.
Laura - What are some of the supplements you are currently taking? The cbd hemp oil is a form of marijuana oil that does not have the ingredient to make you high but has the benefits of the drug to work against the disease. Not sure how it works but need to look into it more. She takes it in pill form before bed. I think you need the card to be able to purchase it at one of the medicine stores in our area.
Texasrose - your hair looks pretty good actually. Mine was way more thin than that when I was on my first treatment.
So has anyone here done any study trials?
Have a good day...Lucy
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Good morning Ladies, I have a human hair wig that I wore when I lost my hair during AC/T. I found stretchy caps at Sally's that worked out great! I had several of them so I could wear a fresh one every day, and just hand washed them. They actually held the wig in place and I never had a problem. They kept my wig cap clean as well. Human hair wigs are quite expensive so I had to make it last, and it still looks great 13 months later. And my hair has grown back really thick and wavy. Now to color the dark gray and silver! But so thankful to have that choice. I also take Biotin every morning and my nails have never looked better. My MO suggested that I start it at the end of Taxol to speed up the hair growth and nail repair. Cheap fix and it worked wonders for me. My new obsession is glitter nail polish! Happy Holiday! Cheryl
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I ordered some wig liner cap things so maybe they will help. I should get them next week.
I take vit d, tumeric and glycine (and others for neuropathy). The glycine is to reduce methionine. I read a study that TNBC responded to a low methionine diet and then researched to find the glycine negates methionine. It has no side effects and it's cheap !!
Btw I took biotin when my hair started to grow back the first time. It really works !!
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Cheryl, I have used biotin since day one and it has helped me a lot with my nails skin and hair for sure. Have never experienced bad neuropathy yet...thank you God!
Laura, I am taking 8k of the vit D and turmeric in pill form as well. What is the glycine? I have L-glutamine I am taking everyday as well. Haven't heard of the methionine? What is that?
Has any of you done any study trials for your treatment?
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Spirit methionine is something that is in animal food. Methionine is an amino acid found in foods. The highest counts are in nuts, beef, lamb, cheese, turkey, pork, fish, shellfish, soy, eggs, dairy, and beans. I have no idea of the studies our room if it really works or not but it's cheap and I have no side effects to take the glycine.
I had my infusion Thursday at a 50% reduction in dose. So far I'm not in excruciating pain as I was in day 3 last time so crossing fingers. I have some aches and pains etc but I'm not in bed moaning I pain. I am a bit irritated though as my ins company denied my omeprazole. Really ?!?! You'll pay for all the anxiety pain meds and anything else but you won't pay for omeprazole which I desperately need for my stomach because of chemotherapy? OTC isn't the same and since I have to take 40 mg a day it costs more. Geez.
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Hey Lauralind...so is the pill that you are taking for Methionine, is it to counter act the high methionine in nuts, beef, lamb, cheese, turkey, pork, fish, shellfish, soy, eggs, dairy, and beans? I have heard of a low Methionine diet which is basically a Vegan....
Hope everyone had a Good Labor Day Weekend! We did....my DH and I went to Sedona and the Grand Canyon...all I can say to all of it is BREATH TAKING!! We did not have enough time to enjoy everything! We plan on going back.
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Texas yes exactly !! Supposedly the glycine counteracts the methionine. I've cleaned up my diet somewhat but I'm still a carnivore at heart lol so vegan just wasn't going to cut it.
Sounds like a wonderful trip !!! It's def on my todo list !
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Lauralind...I am with you. I cannot go total veggie and fruits. I cut way back on the red meats but I love fish so I am going to give this a try. Thanks for the info!
CT Scan yesterday....I get results tomorrow morning. Praying for no change! But will be super happy with a little shrinkage of the mets!
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Ohh I pray for good scans for you !!!
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I'm having a day. Or really a few days of just being over all this. I'm tired. And tired of being in pain and tired of watching my life go by while I just sit here. Sitting or lying down because that's all I can do. I know it's the chemo but it's so hard to say ok on to another drug when the taxanes work so well. But I really don't have too much of a quality-of-life right now. I guess this sounds like a pity party and I suppose maybe it is. I do have a massage appt in a few min if I can get up enough energy to go.
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Hey Lauralind....sorry you are having a bad few days! Hang in there! Hope you went to your massage and it helped. PM me if you just feel like chatting about stuff........
I am here for you!Julie
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Received my CT scan results this morning....I am NED! God is good! Will continue on the Taxol since it is working....ONC said she might reduce dose at some point, but will leave as is for now since it is working.
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Woohoo!!! I'm so happy for you !! I've been thinking about you all morning. That is awesome news !
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Congratulations TexasRose - what a wonderful start to the weekend. Hope you get to celebrate
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