Starting chemo at January please advice which regime !!!

roby7

Hi,

I had a right total mastectomy on November regarding to huge DCIS 10 - 15 cm the dr found 2 positive essential lymph node. One with micromestastesas and one with isolated tumor they never found invasive cells in my breast so chemo is optional they said it will benefit me with 1% -2% any way I choosed to do it but I am so scared from Taxotare and permemant hair loss

I asked the dr to give me more options she said this is the standard but I can take taxol for 12 sessions

I am really struggling I don't know what to do

Taxotare and cytoxon 4 sessions

Or taxol alone 12 sessions

I asked her to give me cytoxon with taxol

She said she never tried that

Any advice ???

roby7

I think I have bad luck with your forum every time I post a question no advice

I will try to read old postsmay be I find some answers

Holeinone

roby,

Weekends are SLOW & with the busy holiday season, you might not get the response you normally would.

Hard for me to give advice, I was dx stage 3 & had A/C ( dose dense ) and then Taxol. Your situation is different.

I did lose my hair, that was very minor. Being bald was not a big deal for me. My hair came back in as thick as it was before.

The A part in A/C is the "red devil". Seems like it causes the most havoc. Of course everyone is different, that was my experience.

I decided when I was dx, to go with what my Drs. advised...( like a had a choice.....lol...).

Maybe post in the DCIS section, there are some very knowledgeable ladies there....

roby7

Hi Holeinone,

Thanks for your reply. I think the reason for this that my case is rare. She said if I choose taxol it will be alone without A/C

Thanks a lot for your reply I really appreciate it

roby7

Hi Rose 50,

Sorry to hear about this horrible side effect you got I hope you can solve this I saw a lot of vedios on how to treat naturally. It will take time and a lot of tries i did that with other disease I got before. I tried natural remedies as doctors didn't help and it worked it took months but it worked. I remember that castor oil helped me with my eyelashes it is really good. I hope it helps. The dr refused to give me cytoxan with taxol they can,t tell if I am stage 2 or dcis the dr didn,t mention taxol I am the one oh who mention it and she said taxotee is better did you choose to have chemo or it was necessary? I wear scarf anyway for religious reasons . Cold caps needs a freezer or you will have to do a lot of work. Thanks for your reply xoxo

roby7

Hi Rose,

It is really make me angry that no one warned you and me I knew it from the Internet

Hopeful82014

Rose, did you have permanent loss of all body hair (eyelashes, brows) as well as your hair? Any other persistent side effects? How many rounds did you have?

(Either way, it totally sucks. I'm sorry.)

I appreciate the link. I see that it's worse in conjunction with clyclophosphamide. IF I have to do chemo that would be the exact regimen that I'd be doing, so this hits all too close to home. I also have concerns about nerve damage, which I know can be permanent.

jenjenl

Are you sure it's DCIS if you have 2 positive nodes? Doesn't that mean it was invasive? I'm only knowledgeable in IDC so more curious than anything.

Either way that's a few chemo options to process through, have you gone for a second opinion? I did have Taxotere but my hair did grow back, I believe that SE is rare but unfortunately there.

I hope you get some help soon.

knmtwins

roby7 you had a 10 - 12 Centimeter In-Situ cancer. WOW! And since there was cancer in the lymph nodes, it now isn't truly In-Situ anymore, is it? Or was there a different type of cancer in your lymph nodes? Again WOW!

Now onto the hair loss question, bot Taxotere and Taxol are Taxane drugs, so they both have a possibility of hair loss. Maybe doing cold caps to help preserve your hair? There is a whole topic on that. Maybe get a second opinion? Maybe go to the cold cap topic and see if any of those ladies can offer advice. I think there is also a topic about hair loss, maybe posting there? This also might be the time for a second opinion, and maybe someone from those forums could advise you on who to see. For me, I have 3 kids 10 and under and it was invasive and between 2 and 3 cm. I was ER+, PR+ and HER2+++, so not a good kind of cancer, and aggressive. Because of my kids, I was aggressive right back, did the pre surgery chemo, and when they did my double mastectomy, all the cancer was gone. My hair just didn't matter to me, being alive and cancer free for as long as I could be was what mattered. I was willing to get rid of it with a wrecking ball, and did. Everyone is different and you have to think about what is important to you. Mind you, if my hair never grows back, I will then upgrade to a better wig. My $175 wig, itches and give me a headache. If this was a permanent thing, I'd consider one of the custom wigs which can be in the thousands of dollars, but hey, if I think about what I spend at the salon, it would be cheaper than hair in a year or two.

roby7

Hi JenJenl,

Yes I am sure it is DCIS no invasive cells and this is rare in dcis patients it is less than 1% of the cas s they said may be there was a less than cm invasive cells and they missed them they don't know but final report said no invasive cells found but there are 2 positive lymph nodes !!!!!! I am trying to get second opinion. I am 35 years old too looool thanks for your Reply

roby7

Hi knmtwins ,

Sorry for your aggressive kind you really cheered me up I have 10-15 cm DCIS without invasive cells they spend two weeks trying to find any invasive cells and they are surprised with micromestastesas in the lymph nodes it's really confusing. I have three kids too. The problem that my oncologist didn't said it is nessacery for me to do chemo I also talked to oncologist in other country and he said you need just hormonal therapy but I decided to go with chemo as 2 positive lymph nodes coming from no where it is scary I did pet scan and it was clean I am just trying to choose between these options It is hard to find second openion in holidays happy holidays and wish u all the best

Sjacobs146

I recommend that you get a second opinion. Chemo has its own side effects, and permanent hair loss is the least of them. Adriamycin can cause leukemia. If my doc said that she didn't think I needed chemo, I'd have celebrated.

April8

I think you should get a second opinion. And maybe you should have an MRI of your breast if they haven't done so already. I'm doing12 week Taxol and Herceptin with no positives nodes. Taxol isn't that bad but it sounds like you need to do another protocol first. I'm bald but that is just the way it is unless your MO lets you use Cold Caps-mine said no. I hope you get good info

Hopeful82014

Dear Rose - Thanks for sharing the additional details of your taxotere outcome.

Believe me, there is NO way I would minimize hair loss; even the thought of temporary loss causes me pain. Facing the possibility of permanent loss would be agonizing. And, as you say, it's not as though you had the opportunity to make an informed choice; that's adding insult to very real injury. I HATE the fact that MOs and others in the field downplay the impact of hair loss due to chemo. I think I could live with the nausea, fatigue, etc., if I could avoid hair loss and neuropathy. At this point I'm crossing my fingers and praying VERY hard that neoad. Femara helps me clear my node(s) and avoid chemo. However, many, many women don't have that option and it really makes me angry.

I'm so sorry you ended up stripped of such a huge part of who you are, Rose. Thank you for helping to get the word out to more of us so that we can have informed discussions with our medical teams and, perhaps, advocate through larger organizations for more humane approaches to treatment.

Hopeful82014

Roby, I'd be careful about pushing for chemo. It's accompanied by many serious side-effects, some of which may be permanent. You're basically poisoning your body in order to kill cancer cells, and it has no guarantee.

roby7

Hi Sjacobs,

I am trying to get a second opinion but as my case is rare they are confused you have 1 positive lymph node I have 2 without any invasive cells !!!!! That's scary. I did an MRI before my mastectomy and it said no lymphnodes involved but after surgery they found 2 :-

roby7

rose 50 , when I told my oncologist about this side effect she said I never saw this. But with my experience with doctors they don't know everything and they always say less you have to push. I am sorry about your nightmare I still want you to try never give up.

roby7

Hi April 8

I understood that you are taking taxol alone with another medicine for Her + cancer is it right ?? When did your hair fall down ?? And is it because of taxol alone or the combination what other side effects you had ?? Thanks for sharing your experience and happy holidays!!

roby7

hopeful 82 , you are right !!!! it is really a hard decision and our journey with cancer is full of hard choices. In my case in i will poisin myself to kill cells that might be there pet scan is clear

jessica749

Where are you located? Where are you being treated? If your case is rare/unusual (it sounds it) I would definitely want to get a second opinion at a major cancer center now. If you are at a major cancer center…well frankly I don't get that feeling from your post but maybe I am wrong. If the second opinion echoes what your treating doctors are saying, great, you can know with confidence that what is being recommended to you is the 'state of the art' way of treating your type/age/status etc.

You also want to confirm/second opinion the pathology report.

If their opinion differs, well won't that be important to know, too. It happens, and not rarely.

Also, you say 'two positive essential lymph nodes". I had isolated tumor cells and I was told at Sloan Kettering that this is considered, and treated, as node negative. And that in spite of any personal anxieties I had, there was no data to change that anytime soon….

JoeyJamesMom

Hi, Roby7.

In regards to hair loss.

I would suggest searching for this thread:

Topic: Cold Cap Users Past and Present, to Save Hair

I saved my hair by using the Penquin Cold caps. I had 4 treatments of Taxol and 4 of A/C.

Granted, it isn't as thick as it once was, but no one would know I was sick and went through chemo, if I didn't tell them.

I wish you luck in your fight.

And, I second what others have said, get a 2nd or 3rd opinion.

I did with both the breast surgeon and oncologist.

We may only have 1 chance to kill this beast!

Take good care of yourself :-)

roby7

Hi ladies ,

Jessica

I am in San jose, Ca I am trying to get second openion before January which is hard in holidays I have micromestastesas in one node and isolated tumor on the other one:)

Rose 50

Are you taking tamoxifen? May be this is one of the reasons I saw a lot of ladies on YouTube treated alopecia naturally but they saw results after months or a year hang in there I hope you figure a solution soon

Joey James mom

Cold caps are really a lot of work as my oncology center don't have the freezer but I am considering them I hope I can get a second openion as soon as possible !!!

Izzyfran

hi roby,

I felt the same way as you prior to treatment. I was a healthy 33yo until bc. I felt fine and now I have to make myself sick and get all these side effects on top of it. I tried to weigh all my options and researched (be careful what sites you go) in making my decision. I finally did chemo with taxotere and carboplatin for 6 sessions. I lost all my hair 1 month after I started chemo. I finished chemo in Oct. and now cancer free (Thank God) I have a fuzz on my head and I'm hoping it'll continue.

Just like others have said, getting a 2nd opinion will help. I wish you well. Hope you find something soon.

Racy

Roby, I agree with Jessica and others who said you need another opinion. I'm sure there are other chemo options than you have been offered (if you need chemo). 

Could you get the Oncotype test? 

You still have time in January to get that second opinion, as you only had surgery in November and are still within the three month 'window' between surgery and chemo.

Please go to a major cancer hospital.

Beachbum1023

Hello Ladies! I know that we all go through so many feelings about our cancer, scared is a daily emotion for me. Then the treatment starts, and you just have to run with it. I was terrified to lose my hair. That was a huge deal for me so I chose to have a real hair wig made before I started chemo. I am so glad I did! I had my head shaved before it started to fall out from the chemo. I can still wash, conditioner, and blow dry "my hair". I can brush it and use my snazzy new flat iron on it as well. And it is beautiful, far prettier than my own hair was. I get so many compliments on it, a very good thing when I need to hear that the most! I find it very relaxing to "do my hair" just like I used to do. If you are starting chemo, I would suggest that you take some time to look at all of the options that will work for you. That way you will be ready when you want it, and not have to chase it when you need it. I liked having the control.

I just finished Taxol 11/25 and my hair is growing back in, fuzzy and gray. I still have about 50% of my eyebrows, but I'm still losing the eyelashes with very few left. I shaved my hair off the week after my first AC.

It's hard to comment on the different treatment plans, we all react differently. I had a pretty easy time on the AC, but I do have side effects from it. And I had a less than perfect response to Taxol. I can share what I did to get through chemo, but for me looking like myself was very important.

Good Luck to everyone starting chemo in the New Year, I will be returning to chemo at the end of January. I appreciate any hints and tips to read along the way.