Starting Chemo May 2017

Msrobin, I had some taste issues with Taxol, too. I couldn't taste anything but sweet for a few weeks, and my mouth had an icky feeling, like it was coated with something. My sense of taste is back now (just 2 weeks after my final chemo), but the icky feeling has come back. I read somewhere that sometimes it takes a long time for the fast growing cells to get out of sync with growth/death cycles. I'm guessing that the cells that line the mouth are fast growing, have a short life, and are just in sync, so I just had a bunch of them die off over the last few days. Hopefully they will get staggered soon.

My hair started growing back halfway through Taxol, and is still growing, but slowly. My head looks like a fuzzy peach. All of the new growth is white/gray...I just turned 40 last week, and before chemo I was only about 10% gray. I'm REALLY hoping the color comes back. I've read that sometimes it does. However, my eyebrows hung in there until during Taxol, then they fell out. I have no eyebrows right now, and I have no idea how long it will take for them to come back. I have read that people have the same problem with the eyebrows being in sync, so sometimes well after chemo the brows and lashes will all fall out together because they aren't staggered like they used to be. Eventually they should get out of sync, though.

msrobin58- last Taxol was 8/16/17. I think each week finds another SE gone but it a slow wait, for sure.

Sinuses still dry but not was bad as it was during Taxol. Fingernails still sore from time to time but not a constant pain. Taste buds still off but getting better. Still tired and short imif breath when walking upstairs from low red blood counts

I think the SE take some time to completely disappear.

Msrobin.  I second that, my platelets are once again low, I was checked Friday and will have labs checked again today.  My next treatment is Wednesday-if my platelets are up and it will be my last for TCH.  I too am hoping to get it done!  This happened once before and I had to postpone my treatment and to be honest, it helped my body to re-coop until my next round. 

I hope that your platelets (and mine) will go up and act right!  

Notanisland and MsRobin   They did indeed postpone my treatment for 9/20/17 and have re-scheduled for 9/27/17.  I have had this happen once before and that extra week helped me a great deal to build up strength for the next one.  I guess postponing this one feels a bit harder because it would have been my last chemo (TCH) and I was looking forward to being done.  I will have 6 more infusions of just Herceptin after that.  I WILL NOT let this postponement depress me and will look at it as a chance for an extra week of rebuilding strength.  

I pray for God's presence as I finish up these treatments and go forward as it has been so hard to concentrate and stay on task since I started chemo.  I try to read my devotionals, I read AND re-read and read again because I cannot absorb what I have read!  It is frustrating to not be able to concentrate and remember what I have read.  I start to pray and get lost, only to start over again.  I know that He knows my heart so, I try not to let it worry me too much.  Cannot wait till I am through with chemo!!!

Melanie

(cross posted)

Hi PauletteK, You may be behind me in chemo, but you've already had surgery, while I have not. If my calculations are right, you finished AC at the end of August and recently started Taxol. My experience with Dose Dense AC (4 treatments, 1 every 2 weeks, over a total of 8 weeks) was that I had about 6 days of very low white blood count every 2 weeks despite the Neulasta shot. I was fortunate in that the low WBC did not make me feel bad, but I did have to stay away from crowds in a kind of self-imposed confinement from Day 5-10. By the time I'd go back for my next treatment, my WBC would be good enough for clearance. It really wasn't bad and I was hopeful that the subsequent 12 weeks of Taxol would be just as easy to get through. In fact, my Nurse Practitioner told me that for many people Taxol has less side effects than AC. Unfortunately, that hasn't been the case for me. Neuropathy (numbness) in my fingers and feet, muscle aches and fatigue started slowly and then accumulated, affecting me for longer periods of time and increasing in intensity. With only 7 days between each treatment, that didn't leave too many good days, and so the one week delay of Taxol 9 was needed. And it has helped to "dial back" the side effects.

But you should know that my experience isn't necessarily yours. We all respond differently. Taxol affects MsRobin's and moodyblues' platelet counts, frustrating them by delaying their treatments. You may not have an issue with your blood counts either. There are many people who find Taxol more tolerable than DD AC. I hope you are one of them. Wishing you the Best!

Well ladies, Taxol #5 was a go today, and I’m moving forward again. My white count and platelets were both high enough to proceed. I will get two shots after each treatment from now on, not sure whether it will be Neulasta or Granix. Those darn shots make me ache like the dickens! But they seem to work, so bring it on.

I’ve never been so excited for chemo! After missing two treatments in a row, I’ve been feeling so well and back to my usual perky self. The real Robin has often been lost during this journey, to be replaced by a much more sedate version. So the real Robin was enjoying her time at the cancer center today, believe it or not. My doctor, the receptionists, and the nurses have all come to know me, and I was greeted warmly by all. And I was thrilled to get going again. Onward! There’s a saying about getting going in order to be finished faster, but I can’t think of it. Anyone?

Ms Robin.  I am happy that you got to go through today! 

I understand what you meant when you said "the real Robin has often been lost during this journey"  I feel the same way many times and am looking forward to when chemo is over.

Some replies---

Several ladies have mentioned that it isn't all bad having a week off, giving you time to recoup and heal. While I definitely agree with this, my frequent delays worry me. I'm frightened that it's weakening the effects of my chemotherapy! My AC was supposed to be every two weeks, but my body just couldn't handle it and they switched me to every three weeks. Now I've only had five Taxol treatments and I'm three weeks behind with delays! That makes a lot of changes to my original treatment plan, and my fear is that the chemo just won't work quite as well as it could have, allowing the cancer to return. That's why I've been so bothered by the delays.

RebaMacFan123-I was too sick and weak to fight much during my AC treatments, but the Taxol has been kinder to me. So now I can fight!

MoodyBlues-isn't it maddening how much this disease has taken from us? I'm trying to find my real self again, but I must admit to struggling with self image problems. My physical appearance shouldn't matter that much, but it does. My bald head, no eyebrows or lashes, scars, two different sized breasts, and just plain feeling ill have all combined to make me feel so unattractive. I'm sorry you had to postpone your last treatment. Someone rang the bell at my place today, and I was envious!

PauletteK, good luck on your first Taxol treatment tomorrow! I hope it goes well.

LovePugs77, I sure hope to see some returning hair growth soon! I'm older than you at 59, so I don't really care what color it is. I've colored it for so many years that I'm not entirely sure how much gray I have! I don't want to continue coloring it due to the chemicals. But if it makes me look old, I might weaken that stance.

Notanisland, don't you wonder why we in particular struggle with low blood counts? The isolation wears on me, as does trying to stay out of my garden. A couple weeks ago, I was feeling so well and spent several hours on a Wednesday digging and planting. The next day I went in for my treatment and my WBC was dangerously low! I really took a risk, and didn't even know it. Now I'm frightened to garden, and will have to leave it to hubby. I'm glad that your postponement gave you some relief from the neuropathy.

As for OPI nail polish should the colors be darker shades or will any color do? I receive a pretty light color in my LBFB goodie bag. I prefer lighter color  on my hands 

MsRobin, YAY! I hope the extra day-after shot keeps your Taxol treatments on track from now on. Try not to worry too much about the impact that delays have on the effectiveness of your treatments. A chemo-buddy of mine completed neo-adjuvant chemo about 4 weeks ago (DD AC followed by Taxol). She had a terrible time with UTIs and low blood counts during her treatment, and like you, had a couple of hospital stays that delayed her treatment by a month total. Well, on Monday she had a lumpectomy and I received a text from her less than 24 hours later with the best possible news. She had been diagnosed through ultrasound with a 2.5 cm breast tumor and a swollen lymph. She had a biopsy done, but I don't believe the lymph was biopsied at that time. But in the ultrasound after chemo and prior to surgery the 2.5 cm tumor had shrunk to microscopic particles so the surgeon removed the tissue around the biopsy markers. The lymph was negative in the most recent ultrasound and because the sentinel nodes tested negative, they removed only two instead of the planned 3. She will know more after the pathology report on the removed tissue, but her prognosis looks very good!

notanisland, the reason why I fret so over these treatment delays making them less effective is because my Oncotype Dx score being ridiculously high at 66% chance of recurrence without chemo! I guess I should ask if they have a guess on the chance WITH chemo, but that 66 terrifies me, and understandably so. I often get scolded by my best friend for letting that fear control me, but I’m not someone who believes that the power of positive thinking will cure me. The world often tells cancer patients to fight, fight, fight, like we can wish it away. I hope like hell that it never comes to get me, but I don’t think I can stop it with my brain. Treatments, doctors, medical knowledge, surgery, radiation, healthy living, medicine, these are the tangible things can help me. Amazingly enough, even with that nasty 66 breathing down my neck, my lymph nodes were clear, so that brings me some comfort.

That being said, I’m so glad that your friend had such good results from her chemo, despite her difficulties! May we all get such good results.

Paulette, I’ve come to realize how important food has always been to me, and what joy it has brought to my life, because I continue to be traumatized by my inability to taste anything. I want to enjoy food again, but right now I only eat to live. It’s been a real change in my life, perhaps something I should have learned long ago. Obviously, I’m overweight. I blame my breast cancer on that very problem, so perhaps I’m now punishing myself? I almost feel like I’m going to come out of all this with an eating disorder, because I have so many food aversions these days!

I'm trying to eat on my good days, I know our taste buds will be back as soon as we finished our chemo. Today I went out lunch with my friends I finally feel like a normal person again even I look different. But I feel much better, then I realized how depressed I have been the last few months. 😓😓😓 I used to be an optimistic person, how much I let BC changed me.

Moody I know how you feel since we are in the same shoes now. To me, I feel like I got my second chance of life. If BC didn’t spread to my lymph node I wouldn’t even know I have lump. Can’t feel it, mammos and US didn’t show it. So I do think God gave me a second chance, I don’t know the length of time, but I think I will try to use my time to help other once I get through with all my treatments. Will try to spend time with my family and thanks them for the supports they gave me during this time. I will work on my bucket list so I can complete some of them,

I need to focus the time after treatment so that will give me hopes and some joy. I know the weekly chemo get me down, soon will be daily radiation could be worse. But we need to focus life after treatment and I hope that help us get through the bad time.

hi Blue

Hope you feel better emotionally it's hard when you think about how uncertain our future, however who can really control the future? I just need to tell myself I need to put my life back together I still am figuring out how to do it myself. Thank you for the prayers!

Hugs!

Paulette