Weekly Taxol group
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Brightness- yes, lonely feelings, feeling like everyone is out living while you work through this mess you never wanted is normal. You'll have better days, days you feel stronger. Continue posting here, both the good and bad times. Believe me you're not alone, we know and understand.
Naps are great, don't worry, whatever makes you feel better. I had a great week doing things around the house, completely content. Then this morning I looked around and thought, I've got to get out of here. So we went to a movie and a late lunch. I hate the days when I'm sick of being home because they don't always coincide with days that I feel up to or have the energy to spend the day away. But this too passes. I've finished 8'weeks of AC and I'm 1 week into Taxol. So time passes and you will finish and move on. I can promise that time will not stand still, you will get through this.
Theresa
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I'm very frustrated at yet another treatment delay! This time my white count was fine, due to the Granix injections, but now my platelets are too low. I've missed two treatments in a row with this going on. I feel like my treatments are simply going to drag on forever. Even if I go straight through for 8 more, with no more delays, it will be mid November when I finish. And I started in early May! That puts me doing radiation right through Christmas. Ugh.
The good part about this delay is that it's giving my tongue a chance to recover, and I'm starting to taste food a bit more. Sweets are still appalling, but that's okay. I don't want to gain any weight back though, so I have to be careful.
My MO has decided that I'll need those Granix injections for every treatment from now on. I'm glad it helps my blood counts, but boy does it make me ache! Anyway, wish me luck that this Thursday I'll be able to get rolling on my treatments again. I want to make progress towards completion!
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T-sue, your plans sound wonderful. Ive never been to Lake Tahoe. I've decided on a quick trip to visit my daughter a few weeks after chemo and a trip to the beach after rads. It's good to have some plans to look forward to.
Tpralph, I haven't asked about the port removal, but I will next week, I want it out as soon as possible, I hate it only because it screams cancer to me. When I was in rec after it was put in the nurse said " now that you've got it keep it as long as you can". I remember thinking, " you're nuts". So yes it goes asap.
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Teese - I don't know why MO wants us to keep our port it is so uncomfortable and it reminds us about chemo.
Robin - I know how you feel, my chemo won't end until early December I hate to go through chemo in winter. I already feel cold in September I hate how would I feel in November! 😡😡😡
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Thank you for explanation
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thank you everybody that replied and sent encouraging words. 9/27 is my first A/C visit. I'll keep you all posted.
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Finished taxol number 7 on Friday...only 5 more to go. I can finally see the finish line. After that I will have 3 or 4 weeks off then will have a bilateral mastectomy with about 2/3 lymph node removal from my right underarm and will continue with herceptin every 3 weeks for up to the year mark from when I started it.
I get nuropathy from time to time but notice it mainly when I am sitting around. If I get up and get the blood flowing it gets better and goes away. My head hair is starting to grow back and is so super soft and dark when I had reddish light brown hair before. My eyebrows on the other hand are sort of falling out and growing in at the same time and I've lost just about all of my lashes.
I have noticed I have become more achy especially in my hip bones and my feet bones and in my sternum and in between my ribs. I take Aleve for this and it helps. Also I take immodium twice a day to ward off the horrible stomach cramps and diarrhea I was getting at the beginning. I still have a bowel movements at least once a day so I'm not too worried about constipation. I also notice with Taxol I feel a little nauseous for one or two days. I take a compazine for that and it helps.
I have not had any nail issues. I use OPI nail Envy and so far so good.
A word about the premeds...on my first taxol they gave me 50 MG of benedryl iv and I could not handle it. I was dizzy, shaky, nauseous. It was not good at all. I had read that some women get a zyrtec tablet instead so the next time I went in I requested that and felt much better. Now I just get Pepcid iv, 1 steroid pill, and the zyrtec and am fine. No allergic reaction or anything. So if the benedryl bothers you talk to your MO about zyrtec.
That's about all I can think of for now. I am so tired after not sleeping well for nearly 2 weeks.. pretty hurricane prep had me stressed then we spend 3 days at my brother in laws to ride the storm out, 2 days at my in laws and 3 days at our house with no power. Luckily a friend of my husband's lent us a generator so we could run a window ac unit but we all had to sleep in one room on couches and air mmattresses. It was like camping out of our house. I was thankful only because it could have been much worse. We still had a house to come home too with minimal damage only to a fence out back.
Take care ladies. I can't wait to ring that darn bell. I wanted to make a banner to run through but thought that might be a little too much.
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hhuey - a banner and full marching band sounds perfectly appropriate to me!! Congrats on seeing the finish line .... I just finished #2 of 12 (Taxol) and am just embarking on that road...
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hhuey - yes ring the darn bell 🔔 and wish you luck!! So glad you're getting to the finish line soon I'm hoping we all get there soon. Meanwhile stay away from the hurricane and be safe
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Hi Ladies. My MO mentioned to me that DD Taxol is an option.. I haven't even started AC and will on 9/27.. the reason this was put on the table is I have a day off every other week from work and this could fit well. I'm trying to minimize time needed from work.. I know I will miss time due to feeling crappy, so i want to miss the least amount of time possible.
So does anybody recommend doing the DD Taxol? My husband asked me not to.. because just going through chemo is going to be very difficult let alone doubling up with the doses..
I would love your thoughts.
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hhuey, We are on the same timeline. I just finished #7 on Monday. I buzzed my hair after #4 cause it was coming out. I still have lashes and brows. I am fine treatment day and day after is good .Lot's of energy. Wed and Thurs ,I feel a little off ,but not bad.Fri,sat,Sun are usually good too. Then I get treatment again on Monday. I can see the finish line too! I just take it day by day!
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Hi Tina, that's a tough question because gals have done either one or the other. I had low-dose weekly Taxol for 12 weeks. In general, it seems that my side effects were less than those who reported here on their experience with dense dose taxol. I know that some people get the weekly taxol towards the end of the day so that they can work in an office in the morning.
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I thought of switching it to weekly taxol after DD Taxol #1. Glad I did not.
Yes it was painful but shorter than weekly And I really needed to throw kitchen sink at my bleeping disease. I really think in terms of SEs and lingering SEs weekly would not have made diff for me.
Again the decision is for you.
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I thought the DD was every other week rather than weekly, so the end time would be the same. Is that right
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I believe DD is four treatments over eight weeks vs 12 weeks of a weekly. I've heard the dose is 2.5 times that of the "non-dose-dense" version, but I can't say for sure (my nurse was rattling it off when I asked ... didn't seem to be quite three times, but was just a bit more than double).
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I stay for my 12 weeks I'm not even sure my body can take 12 weeks of chemo. Seriously I'm so tired of the chemo now.
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hang in there, Paulette... one thing that has given me hope is reading past posts on this thread, and seeing women at #9 or #10 talking about how it flew by....
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Thanks for your thoughts everyone... Talked to my oncology office today... i am going to go with the 12 weeks.. I just wish this would all get here. Next Wed is my 1st AC. I want this to be moving i've been fretting about chemo since the day they told me they see something suspicious.
Reading these threads have helped a lot.
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Tina - you can make it, we all hang in there and try to get to the end of this journey.
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Hi Seaster, I am reading your post and it seems my mom is about the same. She gets her chemo on Monday. On Monday and Tues, she feels fine. On Wednesday, she has indigestion/heartburn after lunch and dinner. Today, she has no indigestion but feels tired and fatigue. I'm keeping my fingers crossed she feels better on Friday, Saturday and Sunday...and then she goes in again on Monday.
I'm going to talk to the pharmacist on Monday to give him an update on how she feels throughout the week and see what tips he can offer.
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I woke up with second thoughts about whether or not I should even be doing chemo. I was right at the brink of was it necessary or not. Apparently the original hospital misinterpreted the size of my tumor because as much as the new hospital can figure in hind sight, it was surrounded by a cyst so appeared larger. When they did the pathology on the tumor after surgery (at the new educational hospital that I switched to), they could hardly find it because it was only 3.3mm, so they went back to the original slide (from the original hospital) and after further studying, determined it to be 5mm, not the larger 7.8 they originally thought. My nodes and margins were clear. My greatest reason for doing chemo was my KI67 number, which was 96%, which is very high, but some facilities don't even use that number because it can be inaccurate.
To the best of my MOs (both the MO at the hospital and the one at the local facility) knowledge, using two studies as reference, with chemo my chances of no recurrence are 98% and without chemo my chances of no recurrence are 94%. This morning, as I face taxol number 2, I'm wondering if I should continue after today. I can find no studies anywhere that indicate if some is better than none, but I came across something yesterday (maybe somewhere on this site) that indicated that getting chemo if it's not necessary can harm some good cells, thus may be worse for me.
I'm sorry if my thoughts upset anyone. I know most people have no choice at this point and I don't want to make anyone feel worse about this already sucky situation, but I'm struggling with this and if anyone knows of studies or tests that could help me decide what to do, I would appreciate it. I'm doing treatment , then I'll meet with my doctor this afternoon for an appointment so I'd love any input you can offer. Thanks
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Brightness, the only reason you are doing chemo is because you are being Her2, if you had a Luminal A, hormon positive tumor you would have done rads and hormonal treatment but Her2 aspect changes everything. There is a great thread called Triple Positive Group in this forum where you can ask your questions, there is also a thread for those Her2. I understand that your case is a borderline and Ki67 is not a good reference to use but Her2 tumours are always very aggressive with high proliferation rate cells, besides you need Herceptin to starve those cells away and has been tried only in combination with chemo. But please do not hesitate to ask for a second opinion and talk to people on the specific threads who can give you more information on Her2.
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Brightness456, please read this thread:
https://community.breastcancer.org/forum/80/topics/781897?page=24#post_5005878
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Brightness, my tumor was very similar to yours - 5mm and HER2+. The difference between us is that my tumor was 26% ER+. My MO told me that my chance of recurrence was 25% without treatment. He showed me a chart of people with my tumor characteristics. Not sure why the big difference between our respective predictions - maybe my 26% ER+, although my MO said that was relatively unimportant in my case. If I could have done herceptin alone I would have, but that was not an option 5 years ago. After reading more about HER2 I'm glad I did the treatment
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hi tina, I know exactly how you feel right now. I started my AC May 16th and it seemed like it would be forever until I was done with the AC and the taxol. I did the 4 AC and 12 Taxol. My last Taxol is sept 27. I can say that the side effects from the AC was worse for me than the taxol but then again it is different for everyone. I wish you well in your treatments and If you have anymore questions don’t has to take to ask on this thread. Good luck Tina everything will work out
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Dawles - glad to see another person done with this journey and ring the bell!! Could you mind to share your journey with us?? How's your hands and feet? What about your nails
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I was able to get underway with treatments again today, and Taxol #5 was a go! My white count and platelets both improved enough, thankfully. After being postponed for the last two times, I was actually excited to do chemo today. I just want to move forward and be finished! To those of anxious to ring that bell, believe me, I'm going to ring it with gusto when I finish! If you want to make a banner and display it around the room, go ahead and do your thing. You'd give everyone hope, and a smile while they're having their infusion. Maybe walk around the room instead of run, but why not? Go for it is what I say. I may be inspired to do the same.
My MO has ordered injections after every treatment now, to help me with my counts. I'm not sure whether it will be Neulasta or Granix, but he wants me to return to the center for them instead of injecting myself, on the day after chemo, then two days later. I'm glad they work for me, but not happy with the aches it gives me. Last time I was told to do three days straight, so maybe this more spread out schedule will ease the aches a bit.
For those of you struggling with neuropathy, have any of you taken, or talked to your doctor about taking Neurontin/Gabapentin? I often see women with neuropathy using this for relief, although it is prescription. I haven't had as many Taxoldoses yet, but so far, no sign of neuropathy. Here's the thing, I already take Gabapentin every day for back pain! So perhaps it's protecting me from it. I've been taking it for a few years and the only side effect I notice is drowsiness. It might be worth discussing with your MO. It's not narcotic or an opioid.
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ms robin- good luck with your infusion I know you don't want to delay your schedule anymore. Take your Claritin in advance before your shot, it helps.
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Paullette, Thank you! still one more week to go.. I really hate the waiting.. I saw that somebody wrote in one of the "start chemo this month" boards say at the end of the day of their first treatment.... "ok, i think i can do this, i think i can handle this" and really had a sense of relief... I feel like once I start.. then I'll know what i'm dealing with and can handle what ever comes my way.
Dawleswim! Thank you for your encouraging words.. Your last treatment is my first - 9/27. I look forward to the day that I can be an encouragement for somebody else when i'm ringing the bell!
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Does anyone who's taking weekly Taxol experiencing indigestion or stomach bloatedness on Day 3-4? My mom is experiencing that usually in the late afternoons, for a few hours. Is there any medication for that?
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