April 2013 Chemo Group

Jen987

It's interesting how each MO is different in what you can and cannot take. My MO isn't very attentive or caring either Katie. She spends literally 3 minutes with you. And that's after waiting almost 2 hours in the waiting room. I haven't liked her from day one but I just wanted to get treatment going and sucked it up. I actually told my husband the other day after an appointment with her that if my cancer came back I would not have her treat me again. I seriously would like to find a new oncologist.



I am only taking 1 Biotin tablet daily (2500 mcg). Should I be taking more Katie? I started taking it about a month after my last chemo. I'm sure you can start it earlier though.

BeHereNow

Jen, will you be taking tamox or an AI? I decided a new onc who actually cares would better help me navigate the SEs, which have already begun. Hormone suppression can be miserable and I want compassionate support!



I don't know what the optimal biotin dose is. I think yours is enough. I just grabbed a bottle at vitamin shoppe.



FYI: "Biotin occurs naturally in many foods. Wheat germ, whole-grain cereals, whole wheat bread, eggs, dairy products, nuts, Swiss chard, salmon, and chicken are all sources of biotin. The biotin in food is usually attached to protein and has relatively poor absorption."

MinusTwo

Ginger:  Great to hear from you.  The article about the hats was a real treat.  You're a little ahead of me since I have another 12 days before the last chemo - but I too find the neuropathy particularly disabling.  Good luck Friday.

Johnetta

Hi Ladies! I hope you don't mind me butting in here, but wondered if any of you could answer a question for me. I just finished my last chemo 2 weeks ago and find that I am feeling completely worn out. I hoped that knowing the chemo part of treatment was behind me and I was moving on would lift me up and give me some energy, but I am barely able to get off the couch. I had moments of being tired throughout treatment, but had good spirits and continued to work. I have missed work for the past two days and tonight when I attempted to make supper had a complete melt down as it totally overwhelmed me to even think about the effort it would take. (my husband is the best, reassured me and made dinner). Anyways -  my question for any of you that have finished your chemo is

How long after you finished chemo did your energy levels start to rise?

shipsgirl

I am officially PFC (post final chemo).  Wooooohooooo!!!!!  I'm sitting here in my second to last cold cap, hardly believing it's over. I've had a busy few days so I am almost surprised to find myself at the end.

It was probably the best chemo day yet.  I was sent down to the "resident" ward.  They handle chemo overflow and were having a quiet day.  It was a great big room and they welcomed us to have our coolers in the room.  The nurses were impressed that I still have hair, interested in the cold cap process, and friendly as heck. 

We had a happy friendly time.  I told them that many places in the States have a bell that people get to ring when they're done and how much fun I thought that would be.  (my cold fish onc didn't think that was a good idea at all)  One nurse disappeared and after searching everywhere, she found a "service" bell - you know the kind where you tap the top button to let someone know you want service.  So fabulous!!

When my IV came out, I went over and rang that bell with great joy.  And then I had my mother and brother ring it since they've been through this ordeal with me. 

I don't even care that I have to ride out side effects still.  I'm just full of joy that it's over, gratitude to everyone who helped physically or in thought, pride that I did it with strength, and relief that I still have hair.

anne11595

If you only know how happy I am to hear that some of you ladys hair is growing back! I really hate having none. I tell everyone that its ok,but deep down it's not.

Its also great to see so many done with chemo and started radiation.I will be there some day to. There is a end to this madness! I love hearing all the good news I can.

I've had this strange feeling under my arm and across my scare on my left side. When I went to my appointment to see onc and have chemo yesterday,found out that I have cellulitis. No chemo for me!! At least this week. So still have 9 more to go! It took everything I had not to cry on the ride home. It's a 2 1/2 hour drive. So I'm on cephalexin for 10 days. I quess I could of cryed when I got home but didn't want dh to see how upset I was. I know he would of cryed with me. Enough crap on with all the good stuff that is going on.

Heather,hope you are home and doing as well as you can be. We all are thinking of you had sending soft hugs to you.

I hope to hear more bells going off. There is a life after all our treatments we need to get to and will!!

It must suck to have onc that you dont care for. They are such a important part of our lives. I have two that i see and love then both and they really listen to me and care a lot. I'm so lucky. Hope some of yous that need new one find them soon.

Sending hugs to all!

BeHereNow

Dear Anne, I'm so sorry to hear about your cellulitis! I would be crying!! Try to be super kind to yourself. You will get through this stressful time. Sending a big hug.

MsPharoah

Katie and Jen, thanks for the Biotin input. My onc is very experienced and well respected, but she is just so damn busy..has so many patients. I believe that there is just TOO much cancer in this world. I always tell her at the beginning how many questions I have so she knows not to make me follow her out of the room with my cape on! I have done pretty well thru chemo, but this next phase is going to last 5 years at least so maybe this is the time that one should make a change?? I wish you luck finding the support you need, Katie. Jen.. That's ridiculous having to wait 2hours for a 3 minute consult. I think I will call the onc nurse just to double check on the biotin, but if it helps with hair growth, I want to take it!



Minus two, I've heard from many ladies that the neuropathy goes away after chemo. Keep the faith.



Johnetta, I have heard that many people approach chemo end without joy. Some people are so excited, like ships girl....we are all different. I was more like you, maybe because my active treatment isn't over yet? I have had 6 treatments of TC and the fatigue is with me every day at this point. So if you are tired, let your husband take over. It sounds like you have a real sweetie! I have worked throughout chemo and my husband has literally picked up all the slack at home. It has been a real blessing. Be kind to yourself...I heard you need to get about 5 weeks out before you feel better.



As you can all tell, I am not an expert....just repeating what I "heard". LOL



Anne, I am so sorry that you are having a setback in your treatment...but your doctors know what is best for you and you trust them. I don't cry in front of my husband either, but sometimes I go in my walk in closet and let it rip! You will be back on track soon, and hair will be growing. Take good care of yourself, Anne.



And blessings to all who post. This thread has been so helpful to me through the chemo process.



Sandra

shipsgirl

Has anyone had any experience with Sentinal products for hair growth?  I have a friend who uses it, and loves it.  But she didn't have major hair loss,

6cats

Anne11595 -- I had cellulitis pre-BC. It is nothing to mess with. I'm thankful it was caught early enough for oral antibiotics! I ended up in the hospital for five days and then on IV antibiotics at home for another 5 weeks! Good luck and take very good care of yourself!

6cats

Just finished Taxol #5.

Any of you ladies have experience with Neurontin (gabapentin) for peripheral neuropathy. Did it help? SEs?

daffyc

So good to hear from many of you on here and how you are doing.  Hope Heather is recovering well from her surgery and those of you having bad SE/complications heal quickly!!

I was just telling one of my sister in laws that even tho it's only been about 3.5 months in chemo for me, it seems like a lifetime ago since it's started.  Maybe it's because we moved shortly before this whole bc thing started and I didn't have a regular routine, but I'm kind of struggling with the 'now what do I do with myself' thing.  I still have surgery and rads to look forward to so have a long ways to go, but it just feels different being done with the chemo portion.  I will just try to get some strength back, get better nutrition, and enjoy my kids the rest of the summer!

And even tho I'm only 1 week PFC, I'm daily looking (hoping!!) for new hair:)  I know it won't happen this fast.  My head was sore earlier this week (like it was before the initial hair loss) so I wonder if I actually had started to regrow a bit and then lost the little bit that had grown?  Who knows.  In my mind, I'm hoping that by the time I heal from surgery and get the drains out I will have some hair.  I think that should be 8-9 weeks from now.  It's what I'm holding on to.

indenial

Johnetta, I think my energy started improving about 10 days PFC...though I still need to stop & rest more & get home earlier in the evening. It has seemed to get better every day, so much better that I tend to overdo it!! 

I'm sure part of it is mental too. I had surgery before chemo & didn't need rads so when I finished chemo I was truly done with treatment (aside from Tamoxifen) so it was like a huge weight had been lifted off my shoulders. If you're still in the middle of treatment, or if you are finished but didn't really have the opportunity to process it all yet, I imagine you might feel much more physically tired and/or emotionally worn out. 

Also, if your energy is getting worse instead of better, maybe you're anemic? 

Molinda

Hi Girls!



I'm back. The 2nd sx went well. I felt 100% better since the all of the infection was taken out of me.

Starting to heal an needing less meds for pain. I'm so tired of sleeping in and out all day. Thanks for your thoughts, kind words and prayers.



In Him

Melinda

heather214

Well ladies,  mastectomy is all done. I had it Monday without complications, then about an hour later started filling with blood internally (hematoma) and rushed back to internal surgery. I was told initially that via the sentinal node biopsy there was only one node that was taken that was “scarred and deteriorated from the chemo and cancer but was cancer-free. I ended up with three drains instead of one, several blood transfusions, and a 4 day hospital stay due to low hemoglobin. Overall, pain is low and tolerable, with lots of bruising and swelling. The second day, my surgeon told me they made a “mistake” and there was in fact still live cancer in the node so I am now not considered cancer-free. You could have kicked me in the stomach. Why did he only take one node? I still have a lot of unaswered questions. Now, he states he will take it to a tumor board, that usually they would go back in and take more nodes. He thinks that the additional chemo and rads will take care of it. I don’t know what to think – I am angry and sad and all over the map. Healing well, luckily no cancer in my R prophylactic breast. Any input ? I am feeling already like I am ready to go back in to get more nodes, I am just so disappointed. BUT, I am alive, thank God.

PamelaKay

Heather, welcome back. So glad to hear from you, even if it's not the best news. I've been thinking about you and Melinda all week. My sympathy for the complications and bad news about the nodes. So do I understand that the node they took out, and at first told you was just damaged, was reexamined and turned out to be malignant?

I haven't been in that situation, but can tell you that in your place, I would be looking to consult with other surgeons/oncologists. Maybe even consider switching surgeons if you're not happy about what they did. Do you live near an area where there are well-known BC surgeons at a larger hospital? I traveled 50 miles to go to a surgeon with a good reputation. 

Melinda, sorry to hear about the infected drains. Let us know what happens.

Anne, bummer about the cellulitis; sounds like a very unwelcome visitor.

Shipsgirl, your shoes made me smile, and reminded me of the time I wore my Ugg slippers to work (and that was before BC, so no chemobrain excuse for me).

Johnetta, my onc says the effects accumulate, so this last chemo might be the worst. I'm not finished with chemo, but can relate: after one of my chemo's I had a dinner meltdown too. I was determined to finish it myself, but thank goodness for my wonderful hubby who took over when I collapsed.

6Cats, I had Gabapentin after a complicated ankle surgery last year. I had a lot of nerve disruption, and the Gabapentin definitely helped (as I found out when I forgot to take it for a couple of days; never did that again!). I had no noticeable side effects. I think after I was on it a couple of months, I started to have some minor effects (dizziness), and that was when I realized it was time to stop as I didn't need it anymore. 

Congrats to Shipsgirl, DaffyC, Sandra, and Virginia on being PFC! I won't be PFC for a year, but only have two more Taxol, then it's only Herceptin after that. 

Both of the two Taxol treatments so far have hit me hard; worse than the AC. About day 3, I get hit by the Taxol truck: nerve, muscle, and bone pain, pelvic pain, exhaustion, nausea. I'm slowly loosing what's left of my hair, brows, and lashes. The only good thing is that the Vicodin keeps me from having diarrhea. A week and a half out from #2 Taxol I am finally feeling a bit better. Next week I am determined to start the Vicodin BEFORE the truck hits. No more trying to catch up to the pain.  

An interesting note: my MO says she thinks the combination of the Taxol and Neulasta is what makes it bad. She offered to stop the Neulasta, but I was afraid that low counts would delay treatments if I did that, so I'm toughing it out. I never had any problems with the Neulasta when I was on the AC. Does this jive with anyone else's experience?

{{TMI alert}} I never, ever thought I would have occasion to ask this, but does anyone else really miss their pubic and nose hair?

AmyQ

PamelaKay:

I didn't lose those hairs - my eyebrows and eyelashes thinned, lost all leg, underarm aka axilla  and chin hair but not nose or pubic - go figure.

MinusTwo

Pamela:  I never thought I'd miss nose hairs but it's really embarassing to walk around dripping all the time.  And it looks kind of funny to walk around w/kleenex stuffed in my nostrils. 

As for the SEs - I'm on a combo of Taxotere, Carboplatin, Herceptin and Perjeta - with a Neulasta shot the day after every time.  Every one has hit me with bone pain.  tx#5 has been the least, but still there along w/nerve & muscle aches.  And this time I'm beyond tired.  If I even look at my bed I crash.  It's hard for me to point fingers at the culprit since many have similar SEs.  I'd love to say only one more tx but after combo #6 I'll still be on Herceptin & Perjeta for a year.  Maybe I can get rid of the Neulasta?  But I still have rads ahead too so maybe not.

Hope the Vicodin ahead of time works for you.

MinusTwo

Heather:  Didn't mean to forget you.  Sorry for your experiences.  I agree w/Pamela.  California's a big state and it's sounds like a 2nd opinion might be in order.

MsPharoah

Melinda and Heather, so glad to hear from you and that you have come through your surgeries.



Melinda, you probably needed all that rest to heal. But it is tiring being in bed.



I am so so sorry Heather that you have to deal with the "mistake". Yuck! that's a word I never want to come out of my doctor's mouth. I think I agree that it might be time for a consult before you take new steps with dissection and or rads. I hate this disease so much! I always tell my husband, " there aren't any obviously better decisions". We just have to get the best information we can and move forward....no regrets. All the best for your continued healing, no pain or setbacks.



Pamela Kay, I think that the taxol and neulasta combo is definitely causing your pain. I'm not sure what you are taking but here is what I did and it made my last two taxotere/cytoxan /neulasta treatments easier. I take one Zyrtec and one aleve morning and night the day of the neulasta shot and for the next 3 days. I also take a Zyrtec the night of chemo...day before neulasta. My onc told me to only take these 1x day but I found 2x was better. Of course if you have Vicodin, you may be better off. I also wanted to skip the neulasta but was afraid that it would be worse for me.



Nose hair and pubic hair? I don't miss my pubic hair but I miss my nose hair. Was shopping with my daughter-in- law a few weeks back and bent down to grab my purse and a giant blob of nose drippings splattered on the carpet in the store. So embarrassing!!!



Talked to my onc and she wants me to wait to take biotin until I see her next. We'll talk about dosage. She said no big deal...she just wants me to get farther out before I add something to the mix.



Today, I received a card from my daughter. I hope you don't mind if I share. It was so sweet and so appreciated.



Dear Mom,

I'm so proud of you for getting through this gross, gross chemotherapy. I can't wait until you feel better and I can take you shoe shopping. You've done so well and have been a good patient and have looked at the positives during this awful mess better than I ever could. You are my rock and I love you so very much.



My best to you all for good healing and happy times.

Sandra

PamelaKay

Thanks, Sandra, for the tip on the Zyrtec and the dosing. Last time my MO suggested Claritin/Aleve, which made absolutely no difference. I will ask her about changing to Zyrtec at a double dose.



What an awesome letter from your daughter! It's things like that that keep us going.

AmyQ

What a touching letter from your daughter - so very moving.  You have raised a wonderful daughter! Congratulations.

BeHereNow

Heather, I am so sorry you have been let down by your medical team. I would be upset, too. This is too important for them to make mistakes. Gosh, I want to fly across the country and kick some a$$!! Can you get a second opinion? I know it's emotionally and physically hard, but it's worth it.



I felt my surgeon and MO were neglectful and it caused me a good bit of suffering. Now that I have a new team I feel so much less anxiety. My new MO is kind and thorough and she has referred me to a new surgeon. She even apologized for those in her profession who had let me down. Huge difference!



You deserve the best team.



So glad to hear your prophylactic breast was negative and that you're healing well at this point. I'm sending a huge hug and good wishes. You will get through this.



XO

BeHereNow

Melinda, glad you're second sx went well! Keep on keeping on



Sandra, what a sweet letter!



PamelaKay, I hope te Zyrtec hels you. It's such a trial and error process.



Take care, all!

Molinda

Hi Ladies,



I'm having a hard day, can't get pain under control and I feel like my sternum has been parked under a mack truck. Does anyone else have this feeling? I can't seem to get comfortable either. Much less sleep today, I'd rather sleep through it if i had the choice. I was doing so well yesterday I hate this flipping roller coaster. My PS was so sweet in fact when he told me we'd have to do 2nd sx he, my bff and myself had a group hug. So sweet and understsnding, i am very blessed to have him.



Thank you all for thinking of and mentioning me. You are all so awesome. I have to admit that reading your posts is somewhat scary as I was hoping the pain at least woul be behind me.



Nose hairs really! Never thought of that either! Is there nothing this disease won't stop at?



I hate everyone is having so many problems & SEs. Please know that I am praying for all of you! Alone we are divided but together we are united and we will stand firm and kick some major B C butt!!!



Hugs, love and prayers!

Melinda

BeHereNow

Hi Melinda, I'm sorry you continue to be in so much pain, dang it! I have you in my thoughts and prayers.



Turns out I have a rather large seroma--five months after BMX. Had it drained today. Now applying pressure with ace wrap, hoping the fluid will not be able to build up again. I am skeptical. Plus the ace bandage is on my radiated skin. Not comfortable! These things can take awhile to resolve. But it's minor compared to what some of you are facing right now.



Love to you all!

anne11595

Heather,I'm so upset about what is happening to you. I just don't know what to say.I wish we all could have a group hug!

Pamela if crazy how each of us get a little different treatments. I'm on taxol and I don't get the neulasta shot any more. My se have not been bad yet. But only had 3 so far.

The set back that you can get are unbelievable with bc. It can happen even when you are felling great. You just never know whats around the corner. But so far we all end up handling it like warriors that we are!! We all have to stay strong for each other. So close your eyes and fell a great big group hug from everyone!!!

MsPharoah

Anne, I was thinking about you today when I saw your post. How are you doing? Is your cellulitis responding to treatment? I sure hope that you are feeling better and this setback can be in your rear view mirror.



Sandra

anne11595

MsPharoah, I'm feeling great. The meds are working. Ready for chemo on Wednesday. Blood work should be good. Just a stubit set back. Just hope there is no more but as we know it could happen. How are you doing. My goal is to be over most of this so we can have my bday trip to vegas in February. Maybe we can get together then.

MsPharoah

Anne, so happy to hear that you are on the road again! Whew, breast cancer sucks! Sounds like you have a lot of time to heal before your birthday and yes...would love to meet you if you have time when you are here.



So, I am 1 week pfc. I'm doing ok, but yesterday I was sick at work and had to come home. Crashed for about 3 hours. This is the week when I have nausea and the big D...sorry tmi. I have lost 17 lbs on chemo so right now, I am looking kind of sick in my baggy pants! LOL



Two of my sisters are coming to visit mid August. We are trying to prepare for their visit..I think by this weekend, I will have the energy to make up the guest room. Haha. I wanted to take them to a show, but have decided that I do not have the energy...just too soon to be on the strip, navigating in the crowds and walking. They're not young enough to carry me and my husband told me that he is worried about it.



What would I do without my husband? How can I ever repay him for taking care of me except to love him?



I send healing thoughts to all my friends who are sick, tired, sad or scared.



Sandra