Chemo in July 2015

Cheesequake

SVGsurvive, are you in a medical marijuana state? I used concentrated MMJ extract in a capsule each night, all through chemo - it took care of my insomnia completely, as well as my nausea, and helped with the depression and anxiety. If I skipped a night, I skipped sleep entirely. I could probably wean off of it now, but research shows it has very beneficial anti-cancer effects, so I plan to continue using it for the rest of my life.

Zuwali

Suzanne1971 - Thank you for your words of encouragement! I know that I need to keep positive in order to fight this disease. It is really a good thing that I have the Herceptin available to me for the targeted treatment. I hope that it is going well with all that you are dealing with. And again, thank you for the pep talk. I needed it.

SVGsurvive

Suzanne1971, happy early bday to you, and good call on the triple combo party idea! I know little about Tamoxifen since my cancer is TN, so unsure if it induces menopause...either way, sorry to hear you're also in the Hot Flash Club.

Cheesequake, I do happen to live in a MMJ state and have dispensary access. Since none of it is covered by insurance, it seems to be prohibitively expensive for daily, long-term use - but you're right - it's worth a shot to get precious Zzzz's. Thanks for the pro tip!

mdoc524

Thanks All for your comments on the Hot Flashes - mine are more frequent at night but do happen during the day and increasing each week.. I so so hope they go away for all of us when chemo done.. Funny I had a women who worked for me a few years ago and going thru Menapause and she would always get red faced and really flushed on her neck and chest and my hot flashes do not have any flushing so I was curious if they were menopausal or maybe they are but different because chemo induced..

Gargengirl - how exciting your last taxol is Friday!! - I know how hard it is on the little ones - my twins are 9 but they are boys and hanging with Daddy most of the time. My heart breaks as every time they need something they run to him .. very thankful I have my husband just sometimes feel like less of a Mom when I can't do the normal things for them..

SVGSurvive - I have not gotten 8 hours full sleep in months mainly because I am up peeing 4-5 times a night due to drinking 70-80 ounces of water each day.. I have a hard time first falling asleep but after that I can usually go right to sleep even after getting up to pee. The most sleep I get without interruption is 1.5 - 2 hours.. I do take 1 Ativan each night to help ..

Zuwali - great to hear from you and so sorry all you are going thru with now finding out HER2+ .. hugs for you as you add that to your plan ..

Suzanne - Happy Birthday to you! Love the No Mo Chemo party .. I told my friends when I was done and feeling good I wanted a big get together with all favorite foods & drinks to celebrate ... and thank them for everything too!

All I am thinking of starting a Rads Thread called "Radiation in Winter 2015/2016" for those of us who will be getting Rads within the next few months .. I have been reading some of the current threads and the latest one is Radiation in the Fall .. let me know any thoughts ..

Happy Veterans Day - always thankful to those who serve or served!

Mary

Twnkltoz

Mary, a radiation in winter thread would be great! It would be nice if we can keep supporting each other.

6feetover

Mary: I'll echo what Twnkltoz said! I'll probably be having my rads in January, if all goes according to (tentative) plan...

mdoc524

Thanks Twnkltoz & Erica - just created the thread - it is in the forum "Radiation Therapy - Before, During and After" and the Topic header is "Winter 2015-16 RADS"

All are welcome as we get ready for RADS together ... I have to admit while chemo totally sucks and I believe is the hardest of all treatments - RADS scare me especially the skin burn issues... I saw a picture on FB recently a women going thru RADS and it freaked me out

Mary

mama26

I haven't posted in awhile. Just had Taxol number 5 on Monday. I am still avoiding major SE's. I am having minor nosebleeds and the hot flashes are THE worst. I am feeling slightly more fatigued each time but I'm able to do more around the house than with the AC. I'm feeling super blessed. I have an ultrasound next Monday to see how the cancer is responding to Taxol. I hope all of you have minimal SE's!!! Take care.

Zuwali

I'm up early in the morning. It's 5:20am here. I just said goodbye to my sister who flew in from Indiana 2 weeks ago to help me get through my recovery after my mastectomy. I don't know how I would have done it without her. It was so wonderful having her here. I miss her so much already!

Mdoc524 - So glad that you created the new RADS thread. I plan to join as I will be doing my radiation at the same time as the Herceptin.

Suzanne1971 - Happy belated birthday to you!

mdoc524

mama - glad you are doing so well and I agree Taxol is "easier" than AC by far - for me I would not call it easy - just different. Hope it stays the same for you all the way thru.

I have Taxol #5 tomorrow and it is the one I meet with my MO but she could not squeeze me in tomorrow so I have to go to see her today and go back tomorrow for chemo - a little irritating as my husband leaves work to take me - hospital is 30 minutes away and just not comfortable driving further than the grocery store around the corner.. Curious if they will do bloodwork today or hold til tomorrow. My WBC & ANC dropped significantly last week for the first time during Taxol - curious what it will be tomorrow - don't want to be neutropenic with flu and stomach virus season upon us. I need a Hazmat Spraying station in front of my house that the kids (and husband LOL) must go thru before coming in - HaHa.

Zuwali - very nice your sister came to help you after surgery

Thanks All for the comments on the Radiation Thread .. it is nice some of us that have to have RADS can go thru it together and meet some new friends along the way too ..

Hugs to all having not so fun SE's today

Mary

mdoc524

Hi All - wanted to share - met with my MO yesterday and my White Counts dropped again down - ANC down to a 1.3 - so disappointed that I am faced again with the potential to be neutropenic as we are entering the Cold/Flu/Virus Season.. Starting 3 days of Neupogen shots after each chemo now - hoping they work as Neulasta did not for me during AC at least in timely fashion... I can get my 5th Taxol today but she is dose reducing AGAIN another 5% .. they dose reduced 10% after I had the immediate reaction on Taxol #2 .. I asked her if we keep dose reducing does it impact the effectiveness of the chemo doing it's job and she said that it is all a balance - we don't want the chemo to kill you! UGH.. OK

I talked to her about the horrible Hot Flashes and how they are increasing terribly. She shared that there are over the counter meds (Remifemin Black Cohosh) that could help. She advised to stay away from any products that contain Soy and obviously Estrogen. I bought the Remifemin at Walmart ($12) but went online to check reviews on WebMD and they were mixed - some say product is great and others not so much and experienced side effects .. Has anyone here heard of this and/or tried it or any other product?

Happy Friday the 13th!

Mary

Moderators

Mary, take a look here for some tips! Managing hot flashes.

Indeed, happy Friday the 13th!

SVGsurvive

mdoc524, I'm sorry to hear your latest update, although I'm glad you were able to still get treatment, and that you & your MO are finding the balance that works for your body. Hang in there!

Zuwal, my sister & I were just talking about if she should fly out to help w/ my BMX recovery in a couple of months. Your post underscores just how important family & support can be. I hope your healing is going well.

mama26, fingers crossed on your ultrasound! I had an ultrasound check between AC & T with very good results. I found it so surreal to be back in the same room as I was months prior, with the same technician, where the original ultrasound resulted in my DX. I felt so different and evolved. It's amazing how chemo - or any of the treatments really - can so quickly humble us and strengthen us at the same time.

Question to the group: as you ladies get your hair back, are you finding you're getting more or less than you had before chemo? Armpits, legs, head, etc. - it's all slowly coming back, but seems less thick and certainly much softer. While oddly, the light/soft facial hair on my cheeks/chin seems to have thickened - say what?!?

Twnkltoz

@svgsurvive, none of mine is looking enough to tell the difference, but I'm interested to see how it looks when it grows back!

courtleboo

SVG: my hair is starting to grow back. It is very soft so far like baby hair. I still have some spots that need to fil in more than others. Before starting chemo I had very fine hair. Just noticed the last week or so that my eyebrows are filling in nicely. Starting to get very fine hair under my arms and a few on my legs ( was so nice not to have to shave all summer). Nothing coming in thicker at this point.

mama26

mdoc524- For me, Taxol is more tolerable. Remember, I had a 3 week break between AC and Taxol. My counts are staying pretty stable so far. Only 7 more to go, yay! I've never heard of the med for hot flashes. Let me know if it works please. They are awful for sure. I will pray for good counts and mild SE'S for you.

SVGSURVIVE- Thank you. I hope and pray for good results too. You said it well, humbled and strengthened at the same time.

My hair on my head is starting to grow back and is like baby hair. I will take it, lol. Still no eyebrows or lashes yet. Praying we all have many better days ahead!! Take care.

RuthElizabeth

Hi everyone! Miss you all. I haven't been on line for a few weeks. I'm glad to hear everyone is fighting hard. I'm 11 weeks out from my last chemo. Hair is growing in, grey and baby soft. Eye lashes are few, eyebrows better. But the fuzzy hair on my face is awful. I shine in the sunlight.... My chin hairs are growing, of course, and even a few long ones on my cheeks. No clue where they came from.

Mary, the new puppy is beautiful. Winter is a hard time to potty train, with the cold weather. Good luck. Hang in there. You are a true fighter. You got this....

Miss b, glad your over surgery. I still didn't contact a plastic surgeon yet. Just got back to work and can't afford more time off. But, any suggestions are welcome. I figured I'd go for reconstruction, I don't like what I see when I'm dressed.... The bra and fake boobs don't work. Rubs too much, and makes me sore....

Congrats to everyone who is finished. Good luck with getting your energy back. I struggled for two months with bad anxiety. Didn't want to leave the house. But, it's getting better now.

Peace and Love to everyone. Hugs and prayer to you too. You have all been my extended family. I wouldn't have made it thru without you. I hope we can all stay friends. Ruth

Peabrain

Hi everyone!

What does it mean that we are all so quiet?

Here's a question for you (after a long rambling intro)

I talked to my MO last week about balancing the desire to treat the cancer as aggressively as possible and never having it come back with the desire to avoid permanent nerve damage in my hands and feet. My neuropathy started in my second TC treatment and is advancing each week. My DH struggles with neuropathy from his chemo six years ago so I have a keen understanding of how it affects you for the rest of your life.

My MO said that there is no data to evaluate exactly how many treatments are necessary for my dx. There is one study that shows that 12 treatments have a measurable affect, but nothing for 6, 8 or 10 treatments. Also, there is no way to say in advance whose neuropathy will be permanent and who will recover.

All that said, he believes that the earlier treatments provide the bulk of the protection and will consider ending my treatments after 10 TCs (which would be next week).

Is anyone else having this discussion? Have any other info? I feel like there are no good choices and no information to use to make the decision.

SVGsurvive

Peabrain, I think it's all about total dosage, not really how many cycles. That said, they did determine that weekly Taxol is as effective as dose-dense (2wk) Taxol, but should have less neuropathy/SEs. After some digging - it seems there was a study about the efficacy of AC alone vs. AC+T. See link here, which should jump you right to the "Breast Carcinoma" section of the page. For Taxol, they did a 3 hr infusion every 3 weeks for 4 rounds (aka 12 total weeks). Perhaps this is where the FDA got their magic dosage amount (700 mg/m2 give or take patient weight, etc.).

If there's one thing I learned from the most excellent Cancer: The Emperor of All Maladies PBS documentary, it's that at some point - higher doses of chemo stop being more effective than lower doses, and end up more detrimental to the patient. Given how common breast cancer is, I'm surprised the MOs can't point to a study that "proves" that 12 rounds of Taxol equaling a total dosage of X is the perfect balance. What is the Taxol porridge that is "just right" for Goldilocks? I hope someone can tell you!

Please let us know if you find out more. Once my ultrasound determined I was almost pCR, I asked my MO why we don't just stop the Taxol and move to the next step. She said it was because studies showed it was more effective to just finish treatment. However, we didn't discuss how many clinical trials led to this being the right "treatment".

RuthElizabeth, glad to hear your anxiety about being out & about is lessening! I have total agoraphobic days, as I'm sure many here do, and it's not fun to feel even more separated from "regular life" than we already are due to the DX. I sympathize!

Hmm and as for why we've all gone quiet for a bit - I wonder if that's because there are less of us still in active chemo in this group, combined w/ the fact that we're all getting [too] used to our SEs so we don't ping here w/ crazy checks?

Thunder7

Dear Peabrain,

I have no wisdom on neuropathy. It was my greatest fear and had mild tingling after 2nd and 3rd TC rounds.

Just wanted to let you know that I think about and pray for all of the ladies on the board.

Love,

Thunder7

6feetover

*LAST CHEMO TODAY*—hopefully forever! W000000000000000000T!!!!!!!!!!

Bliss58

Hi Peabrain,

My neuropathy is in my hands and still hanging on almost 4 weeks post chemo. It started after my 2nd TCHP treatment, but was mild and came and went until after my 4th treatment and it stayed. My MO suggested acupuncture since my insurance will pay for it, which I haven't tried yet, but will make an appointment this week. Did your DH ever try acupuncture? I sure would love for that to work for me instead of any more medications or supplements!

As far as some being quiet, I know Mary (Mdoc) started a RADs thread for Winter 2015-16. Many may be chatting there as it's their next step which it is for me, although I'm still taking Herceptin every 3 weeks and Zometa every 3 months now.

Best to all, Barbara

Bliss58

adarkadaptedi,

Congratulations on your LAST chemo!! Yahoo for you! My last one really kicked my butt with fatigue, but hope all goes well for you. Time to celebrate!

-Barbara

mdoc524

adarkadapted - WOOHOO for you - I know you have struggled so much and it must feel so great to be on your last one and ring that bell loud!!! Congrats to you - hope se's on last one are too bad!

Ruth - so great to hear from you - glad you are getting over the anxiety and I know for me - you all feel like forever friends and maybe we set up a different thread to just stay in touch periodically - what do you think??

Peabrain - Neuropathy .. where do I start .. I suffer from mild neuropathy in my finger tips only from a bad accident/neck surgery 5 years ago so I was very concerned about it. My neuropathy increased for me immediately and each week gets a smidgen worse - full finger numbness and some pain both hands and left toes - numb and pain at times. My MO reduced my Taxol dose 2x now due to neuropathy and also now that my ANC dropped again... 1st drop was 10% dose reduction after the 2nd treatment and then this past Friday #5 - dropped it another 5% .. I asked her if the reductions impact the chemo from doing its job and she said it is a balance -don't want chemo to kill you and also added she would skip a treatment if the neuropathy got too bad .. I will say the B - Vitamins work .. I take 100 mg of B6 and 1000 mcg of B12 daily .. take them everyday after eating lunch. I forgot to take them one day and next day could not move my thumb and took them and thumb got better .. sorry to ramble just wanted to share ..

As far as quiet - I have to admit I am not online as much this week or even last as Taxol is kicking my butt - so many se's and each day brings a new SE and the fatigue has me almost not wanting to do anything which is so out of character - and yes we set up a RADs thread too so some increased activity there!

Question - has anyone developed Skin Rash from chemo -- last week my upper legs and hips started itching but nothing there and then Thursday woke up with Red itchy raised bumps all over both hips. MO not concerned since small area - said treat with OTC cortisone - well yesterday the rash started all over both elbows - very itchy - still have it on my hips .. Anyone else ??

Hugs to all

Mary

Peabrain

@adarkadept - congratulations, Erica!!! Please keep us posted on when the SEs start to fade. Is your next step rads?

Thank you all for your responses. Mdoc- I totally forgot about the B vitamin tip - will start that immediately!

I am getting another acupuncture treatment today in hopes that I can minimize the long term damage. My DH did not have anything at the time - we just trusted his doctor who said stay off the internet and the neuropathy would be temporary. He gets acupuncture now to manage the pain, instead of taking the drugs, but it just takes the edge off for a short while.

@SVG - I will check out the article and the PBS doc. Thanks so much for the info!

@mdoc - I did get a rash yesterday and it was all settled down over night. But just now it seems to have flared up again, all across my knuckles. I think it is the chemo knocking down the skin's resiliency and letting my mild joint psoriasis to flare and not an SE that I would get if I didn't have the other condition already.

MissBee123

Hi ladies!

I've been like a newborn lately, all I do is sleep! Surgery is one hell of a recovery and while I'm not back to normal, I'm at least a little more independent.

Got my final drain and stitches out of my thighs yesterday. Currently getting out of bed the day after surgery and having stitches ripped from your butt are competing for top spot in the Surgery Sucks game.

Someone on here asked about exercise and I just wanted to note that I worked out, hard, through all my chemo and leading up to surgery. I'm talking 3-5 days a week with cardio and weight training (kettle bells, squats, pushups, medicine balls, the works!) . I never missed a workout and while it was not easy, it absolutely made my surgery more bearable and recovery faster. My surgeons have had nothing but good things to say about how well I'm recovering. I'm not positive that it helped my chemo side-effects, but each time was different for me so it's hard to say.

Still waiting on final pathology reports to determine if I will have more chemotherapy. In the meantime, onto the next surgery. Thyroid is scheduled to come out on December 11th. My 2 year wedding anniversary is December 7th so this will be a lovely way to celebrate.

Hope you all are doing well and when I can stay awake for more than 2 hours I promise to come back!

RuthElizabeth

just a quick note. Mary, I would really like for us to stay in contact. I don't have anyone to talk to about my issues, even since chemo is over. No one understands what we went thru. I am petrified about the triple negative issue. chemo doc says I'm cancer free, stop worrying. Nothing other than blood work before last chemo has been done. I see him in March with no tests prior to visit. I see my surgeon the week of Xmas, but am told he is checking with my recovery from double mastectomy, that's it. He is easier to talk to, so I will get to ask more. Am I worrying form nothing???? Customers are here, back to work. Rut

6feetover

Peabrain: Will do!

Nope, next step's more scans: another CT scan of chest because a small "ground glass nodule" was found in one of my lungs during my pre-chemo CT scan, and a breast MRI to determine the tumor's response to chemo and to assist in planning my breast surgery next month. Both of these are scheduled for next Tuesday. I also need a follow-up echocardiogram. I'll be meeting with my oncologist again in two weeks. Rads will probably start in January; dunno quite when or the duration, but the breast surgeon talked about at least 3-4 weeks of daily rads, with weekends off. Funola!

mdoc524

Ruth - we can definitely stay in touch - we can use this thread til we are all done.. And then maybe set up another. Question - I am surprised you did not have any scans before chemo - thought PET Scan was routine? Did you MO say why No scans? Maybe because your lymph nodes were clear? I had a PET scan before starting chemo & all came back clear so my MO said no need for additional scans since there is no evidence of disease & the treatments both chemo & RADs would kill any microscopic cells that would not be seen on any scan. I am not triple negative but 2 lymph nodes were positive.

Erica - good luck with all scans.

MissBee - great to hear from you & glad you are doing well. Good luck with Thyroid & hope path report brings good news for you!

My MO is not sure why I now have a horrendously itchy raised rash that spreads everyday - I swear sometimes they don't want to admit that the chemo can do this because it does not happen to everyone. Kept asking me if I changed anything in diet or detergent - No I did not. I had an allergic immediate reaction at Taxol #2 and so they increased all pre-meds - then 5 days after Taxol #4 rash started & now a week later it is spreading & soooo itchy - anti itch creams & Benadryl & Cortisone are no help. MO called in scrip for a round of steroids - UGH - hate steroids.

Hugs to all

Mary

RuthElizabeth

Mary, I had CT scans before chemo. Just nothing after. Hoping for something in March when I see the onc dr. Just for my sanity.

As for a rash. I got a horrible rash after third chemo which got worse after forth. I had it on my face, arms, chest and upper back. Itches like crazy and had small black spots which actually looked like black heads. .??? I asked and no one knew either. I was getting ready to start lymphedema therapy, so I went to the dermatologist. He gave me, Clobetasol Propionate ointment, USP, 0.05%. It worked great. It was oily, but within a few days the itch was better and eventually healed. I hope this helps. He didn't know what it was, just said it had to be from the chemo, but would treat the symptoms.....

I also agree wth you that they don't seem to know all the se's we get. And we are all different..,.

Miss Bee, good luck with thyroid scans too. I have four friends who went thru this. Three were good, still had to remove all of thyroid because of inconclusive biopsy during surgery, and one was cancer. She did well with her treatment. And is three years out with no reoccurrence. Prayers for you

Prayers for everyone.... We need fight cancers butt. Peace and love for a calm week. Ruth