Starting chemo August 2017 - would love some moral support!

Cherry - my MO described chemo as a marathon and the AC is all uphill, while the Taxol is flat ground. Obviously, we are all different, but for most I think this is true. That being said, AC is doable and you seem to be leaning towards it for the same reason as most - do all you can to get healthy. If your MO thinks the outcome is worth the SEs, that's important too

Willow - so happy to see you, today is my good day, so I’m happy. I got this shape pains under my feet couple night ago it went away. Last night slept so well, nothing actually happened. Thanks God!! Pumpkin spices I will get some and see how that would do for me. Keep us posted on the radiation so we can learn few things when we step into that stage.

Willow22, yes to butterscotch too! I had a craving for ice cream the other day and I tried 5 flavors before I got to salted caramel. It was the only one I could taste and it was SOOOOO good. I had them put salted nuts on it and it was literally the best thing I ate in days. I can't say I'm on the pumpkin trend, but have also been enjoying chai which is so similar. I think smoke is the worst taste so far. I tried smoked salmon and it was the worst which is a bummer as I was craving the fish oils and enjoyed it last time.

Cherry - uphill in the sense that running up hill is harder to do. So my MO was saying that AC would probable be tougher than Taxol. I had really bad nausea on AC - the meds didn't work and for the last infusion I got a patch for nausea called Sancuso, which was a God send. In hindsight I should have asked for it sooner. But I didn't get mouth sores like a lot of ladies did. Unfortunately, we can't predict side effects. Some people find Taxol worse.

My dd was every 2 weeks - would find out if every 3 weeks means even stronger dose? I will say that my "bad" days increased with each infusion.

Cherry - actually I'm the lucky one I'm AC, I have very little bone pains, I heard people were crying for bone pains. Also I only have a little nauseous on day 4,which I have the same problem with taxol. For me on AC day one, totally tired, can't do anything. Day 4 to 7, fatigue is the main problem and lost of appetite. Even I'm tired I can't nap, plenty of GI issues also. Either BIG D or Big C. Believe me I'm the lucky one without bone pains. Forgot about the mouth sore!!

VL - good luck to your DD infusion, you are tough!! I even whine about my mild doeses.

Ree- That’s what Heather had and was hospitalized for neutropenic fever although she has the scalp infection too. I remember the note on her hospital door now that you said it. I’m so sorry you are going through this too. She was anemic too and had 2 pints while hospitalized. She bounced back well so I know you will too.

I haven’t been keep up with you all like I should. I feel bad for not offering more words of encouragement but honestly hurt for those with problems and do celebrate the ones with milder side effects.

You all have been a great support for me although I’m the Mom and not the patient you’re very kind for accepting me into this group.

I am however choking back tears at the moment as we got some rather bad news today. I really hate to share it because I don’t want Heather’s situation make you question or second guess your progress. But you are all fighters and I’m sure will beat this.

However, I feel the need to share what’s going on now. Like I said, Heather’s bounced back quickly from her hospitalization and started her first Taxol treatment last week. She’s had a lot of pain in her left breast where the mass is. I’ve been feeling it as I had posted but it seems to change. Heather got concerned that it was getting larger and it did feel like it was up higher on her breast. So we met with the surgeon that had diagnosed her and wanted the 4.3 cm mass shrunk before doing her mastectomy.

We met with her today and Heather was right about mentioning that she felt it was growing bigger. From examining it today it felt between 7-8cm now, which meant not only did A/C not help at all it’s still grown. She’s only had the one Taxol.

Her surgeon didn’t understand why the oncologist office had her call the surgeon but she was glad to meet with Heather and is straight with us. She did a mammogram and ultrasound on Heather. She showed me on the ultrasound what all was tumor and basically it’s not just the left lower quadrant but now you can feel the upper quadrant. As well it’s pretty much the entire left breast. She said she’d hate to operate just yet. She really wants to see what the Taxol does or at least give it a chance to shrink it. She said she could go ahead with surgery but the scar would be much higher and she wants to shrink it down and try to spare her the heartache of terrible scarring so the reconstruction will look better. But in the sameness breath she said she won’t endanger her life and if we don’t get a response from the Taxol the oncologist could try some other or we will go ahead with surgery and radiation.

She got her oncologist on the phone while we were there. She said he’s aware she didn’t respond to the A/C but I’d have like to have heard that from him. I told her we have to ask all the questions and aren’t the specialist so it puts us at a disadvantage.

I am just going to be straight up with him tomorrow and tell him we want to know and want him to explain everything to us no matter how “insignificant” it may seem to him. Also don’t spare us anything that’s not going well. I do get emotional but a realist and would like to be able to deal with things as they come and not be guessing or looking things up myself and assuming things that may not even relate to her. Like him not telling us it was detected in a lymphnode that time.

I actually heard the surgeon discussing things with him and also heard him speaking and they mentioned other chemo medications. Her surgeon said he’ll want to keep the Taxol going for now she feels but if he doesn’t feel she’s responding either change the chemo type or stop and go ahead with the surgery. Which I think should have been done in her case first.

Sorry to lay all this out and on you guys. But goinrfrom 4.3cm to 7-8cm is frightening. Who cares where the scar is if it’s possibly spreading.

Please send some extra prayers up and love to her. Please take care of yourselves as well. You all have come to mean a lot to me.

I’ll try and remember to post after her appt tomorrow and 2nd Taxol.

Thanks all for your support. I mean it was supposed to be grade 2 not the most aggressive! What the hell?

Samm

Hi Cherry! I did have my apple brat and it was delicious! It's a sausage made with meat and apples and served in a bun with ketchup, mustard, and saurkraut. I also ate teriyaki chicken and noodlses, caramel apples, and sweet kettle corn. But I paid for it the next day because I used up all my energy.

This week I have felt especially restless and unhappy--I even cried last night about having to spend Christmas alone this year. Thank goodness for lorazepam. My friends are really good at staying in touch; I just want so eone right here with me who can make me soup.

But the good news is that my last chemo is two weeks from today so the end is in sight.

I hope everyone is doing well and staying strong

Sammi, I am so sorry to hear of the news with Heather. I hope you are able to extract a little clarity from the doctor so at least you know what you are dealing with.

Rljessu, I am in Washington state, too, and I have tried CBD. Once it seemed to really help, the other time, not so much. I was trying to avoid THC, but some may be helpful, especially on the days when I can barely get out of bed and start to get depressed. I'm seeing if I can do without, (like willow, worried some effects would make things worse)but am open to it if needed.

Travel - sounds very interesting that CBD oil can relax you to sleep 10hours plus, I am happy to have 7-8 hours sleep occasionally half an hour nap I will be happy. When you use the oil do you burn it?

Paulette -- oil is oral -- under tongue let it sit for a few and then swallow

The 10 hours of sleep is on the first week - post nelasta, nasuea meds -- only for a few days when needed - i let my body decide, i don't set alarms right now. most of the time it is the 7-8 hours solid. In my regular life, I am 7 hour sleep like clockwork person

Sammi, I am so sorry to hear what you all are going through, I really hope the doctors together will soon figure out the best regimen for Heather, It must be very hard for you but you are such a fighter, keep doing it for your and her sake.

Cherry - so if you decided to do AC for how many infusion? 4? Are you using AC to replace taxol? I have days that my taste buds went bad with taxol, I wish I can eat more. Now I eat many small meals could be my stomach shrinks already.

Marooshka - I do agree we suffer so much from BC, if anything can help out our pains and suffering that will be great. My SIL has BS mets to her bone and liver, that might be something can ease her pains.

My PT gave me tips, she suggested that we should massage our incisions before radiation because radiation will cause the muscle more tightness.

Cherry - if I were in your shoes and if you have faith in your MO, I'd ask for the benefits of doing the AC. It is obviously a very personal decision. I am onewho would say yes to anything that could fight this beast, whereas others really fear chemo and it's possible long term effects, which is understandable. I woul think your MO would be able to make you feel more confident about your decision.