Weekly Taxol for Stage 4
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Lily, I have read a report about lactoferrin, and it sounds like it works to lessen that metallic taste. I hope that it helps you. I know that you have stopped Taxol treatments, have you started any other medications? I think about you often.
SanJF, I hope that you mother does well on Faslodex. I was on Faslodex and Ibrance for 22 months. I found it quite tolerable with no real side effects. My liver Mets completely disappeared after just a few months as did my breast tumor. I did develop liver tumors again at the 22month mark, but they were smaller than the original ones. Faslodex has worked well alone for many people.
S3K5, You have scans this week? I hope you have good results. How long will you have to wait for results?
Snooky, I am glad that you are feeling better. How is the neuropathy? Have you discussed it with your onc?
Marian, I have been watching some of the World Cup soccer matches, too, but they would be even more exciting if I knew someone on the team. It brings a whole new angle to the games.
Stilts, There is an Abraxane thread, but it has not been active for a while. You are certainly welcome here. If you want me to give you the link to the Abraxane thread, I can do that, too.
Steph, Welcome to the thread. It has been a while since you posted. Are you feeling better now? It is never good to feel like you’ve been run over by a truck. We all experience different SEs from treatments, and I hope you feel better as your treatments go forward.
I had an infusion yesterday. All went well. My red blood count and hemoglobin are down again, so I will have another blood transfusion tomorrow. Maybe it will give me the super energy that the last one did. My big news - I have some peach fuzz growing on some areas of the back and top of my head. I am surprised. Of course, if my hair continues to grow in this pattern, I will have to have a more creative comb-over than Trump. I still have no sign of eyebrows, but between my glasses and the bangs of my wig, I think I am okay.
I hope everyone has a good week.
Hugs and prayers from, Lynne
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Hi everyone,
Haven't checked in here in awhile. I've been away during my off week enjoying summer with my kids, taking a trip to Disneyland and Las Vegas.
But back home now and infusion today. I've stepped up my icing efforts, changing my ice more frequently, and the little bit of neuropathy that started to show up about a month or so has not gotten worse and I think has even gotten a little bit better. Someone mentioned Taxol and taste changes. When I started icing at the beginning, I also sucked on ice chips to avoid potential mouth sores, but I think it's helped minimalize taste changes. I notice a change in the taste of my coffee 1-2 days after infusion, but most other things taste the same and my coffee tastes as usual after a day or two.
I'm also noticing peach fuzz growing though I was on dose dense taxol and have just moved to weekly taxol for about 2 months now. I even spotted a few eyebrow hairs coming in. It's exciting to see hair, but I'm trying not to get too excited about it, as I've seen people post that though peach fuzz can grow, it can also all fall out again, so who knows what will happen. I had weekly Taxol for 12 weeks years ago and kept my eyebrows all during infusion. Yet two weeks after my last infusion, they all fell out just as my peach fuzz hair was growing in, weird!
Hoping everyone is doing well and prayers for good scans for all of us!
PB
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Rt_chicago,
I’m doing the happy dance for you too! I had a similar response to Taxol with about 50% reduction in size initially. I’m been on Taxol about 10 months now and though the reduction isn’t as great as it was in the beginning, I am stable and have slight decreases in size each scan.
Just my two cents on second opinions...I belong to an HMO in my hometown for my care. At diagnosis, I went to Stanford a few hours from my home for a second opinion. My MO wasn’t that happy about it, but I told her that it wasn’t anything against her, but that this was my life on the line and I would like multiple opinions in order to make the best decisions possible for myself. My Stanford MO is awesome and totally on board with working together as a team with my home MO. My home MO manages my care here, but each time I scan I check in via email/phone with my Stanford MO and we discuss my scans and her recommendations how I should proceed. So far, I’m still on my first line of treatment, but I anticipate having a relationship with a second opinion MO is important later on, when treatment options are not so clear cut.
PB
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Thank you so much ladies! I really appreciate your input. I'm sure my MO will support anything I need to do to feel equipped. He's a humble and amazing man. It’s more of my people pleasing issues than anything. My previous oncologist was a different story but that's a post for another time.
Lynne - thank you for the happy dance 💃🏼 and for ALWAYS being so encouraging to everyone. I was so encouraged by your attitude and detailed descriptions of your experience on Taxol that I had the courage to move forward with this treatment and I feel really good so far. I have the same white peach fuzz strong on the sides and nothing on top 👴🏻. Lol. I had my eyebrows micro-bladed and that was a total game changer. I'm praying for you and that burst of energy. When will you have scans? Or did I miss that post? Hugs to you! 🙏🏼
Pboi that's so encouraging! Thanks for dancing with me! I like the idea of as many eyes on my case as possible and a team effort. I'm going to sleep so good tonight because of how encouraged I am by reading your reply. 10 MONTHS is awesome just awesome!
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Here’s my Taxol peach fuzz
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I am going to threaten my ZmO next time I see her to leave the infusion center. Today they made me wait for 2.5 hours before I git into a chair. I finally got started at 3 pm for an 11:40 am apt. Last week they were 1.5 hours late, the week before 1.5 hours behind snd the week before over 46 minutes delayed. I can’t tomerate it anymore. They make so much money off of us. I left today at 10 am and didn’t get home until 7 pm. It was my kids first day of summer. Not acceptable.
I am not sure if I have an alternative infusion center but I’ve already emailed and called and things aren’t getting better. I’m done with excuses. I like my ZmZo but I see her for 20 min every : weeks. I go to the infusion center every week for s min if 3 hours. I can’t take this anymore.
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do any of you suffer from what feels like hitcgkadhes in treatment days after your infusions? Or during the week if the j fusion?
I am sitting here awake due to steroids and occasionally get really hit for bruef moments.
The treatment has put me in chemo pause do it could be the beginning of early menopause ( I’m 45).
Just curiou
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leftfootforward, Do you mean hot flashes? I do not experience them after infusions, but others can weigh in on it. I think it is terrible that you have such a long wait ot the infusion center. I don’t understand how they can do that. If they are short-staffed because someone is out, they should call in a replacement. If they are overbooked, there is no excuse for doing so. If they are constantly running behind, they need to look at their procedures and make any adjustments that are necessary. I hope things get straightened out soon, but obviously your attempts to bring this to their attention have fallen on deaf ears.
Rt_Chicago, I have not had scans and none are scheduled at this time. I was scanned frequently when I saw three treatments fail in quick succession before I started taxol, and now I am trying to put off scans for a while. My MO is okay with that for now. He is monitoring how I feel, my blood tests, exams, and tumor markers. Right now everything seems good QOL is important to me. I feel like I have run through a lot of treatments, and I don’t want to rush things. Sound crazy? I am sure he will recommend scans soon.
Pboi, it is good to hear that you continue to see slight decreases in tumor size. I hope to follow your lead and remain on taxol for a while longer. I expected this to be tough treatment and have been pleasantly surprised so far.
Well, I am off to get blood. Have a good day everyone.
Hugs and prayers from, Lynne
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50'S Girl. Thanks for asking about me. The neuropathy is maybe a slight bit better! But, that could be because I haven't had an infusion since June 3rd. I don't like that because taxol was working so well.
I had to have Radiation on my T10 Ver. I have a compression fracture there and cancer is growing. They told me if we didn't do something I was at risk for my back breaking!!! I'm sure that's not the way they said it, but it scared me enough to do the radiation. They tried to explain, it's not a tumor, a collection of cells? So, this Thurs will be my last of 10 treatments to my spine and then it's right back to the Chair on 7/1.
I'm glad that you're coping well with taxol.. I'm like you, I thought it would be a nightmare, but it really isn't that bad.
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50sgirl, my PET scan is on 1st July (in between my Taxol treatments) and I usually get the report within a couple of days. If there is something new or of some concern, my MO calls me about the report right away. If not, I could get a copy of it whenever I stop by for my next appointment. This time the scan is to check the status of the liver mets - hoping they are regressing! I have had only 8 Taxol infusions so far, so it may be too early to see any reduction in bone mets. My pain the lower back is getting worse. Seeing the pain specialist tomorrow.
leftfootforward , sorry to hear about your long wait at the infusion center. Did they tell you why this wait is getting longer and longer each time? Yesterday, I had to wait for 45 mins and went in to check with the front desk and they told me the MO had not put in the order for chemo drug, so they were waiting to reach her (she was off-site). I am sure the reasons for the delay in infusion center may be something that can be fixed. Does it work if you tell them that you have a deadline and have to get home soon? They may be able to expedite things. Hope everything works out for you.
snooky1954, glad you are almost done with radiation. Did the MO mention about reducing your Taxol dosage for neuropathy? Do you ice your feet and hands during infusion? I tried it - but it is hard to keep the ice for 1 hour, so I do it on and off! My finger nails are turning dark inspite of icing (but no neuropathy).
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Yes, S2K5, my taxol was reduced. I only go every other week now. But it wasn't because of Neuro, it was because the taxol was causing severe depression. I couldn't do any icing. I have Raymond's disorder and putting my hands or feet in ice would be sheer torture.
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Snooky1954, yes Reynold's is hard. Hopefully every other week regimen would help with neuropathy too. Keep us posted about how this new treatment plan works for you.
When I get Taxol two weeks in a row, I notice I am more depressed. But definitely not so severe as what you have been going through.
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leftfootforward, sorry to hear about the wait at the infusion center. I had similar issues last fall and for me it was due to trouble with the pharmacy getting the chemos out in a timely manner, so as the day went on a backup occurred in the infusion center for the patients. They have since fixed the problem and I'm able to get in and out in 2 hrs for my 1 hr weekly infusion. Hope a resolution comes soon for you! I had my ovaries out a couple of years ago so I could take Arimidex. I didn't notice much hot flashes then, but since I've started Taxol Ive been getting them more often.
s3k5, do you paint your nails? I read on the boards here that UV rays can potentially damage your nails/nail bed when you're on Taxol. Painting your nails with an opaque or dark polish might help protect your nails, maybe something to look into and consider?
PB
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S3K5- unfortunately, there were 4 other people waiting as long as me. One week the delay was the pharmacy. One week it was the doctor being late. This week I was told it was new infusion pumps. It’s always something new. Many of the good nurses have left because the problems were getting worse and solutions weren’t coming. It appears to be a system problem, with all the money they make of of us it’s maddening. It’s frustrating. I too hope it gets better soon for all the infusion patients.
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It is good to hear from so many of you despite the reasons. Lynne, the Soccer Worlds were great to watch weren't they? Canada was second in their pool so went through but they were eliminated sadly in their first game after that yesterday and the team was devastated. Our friend's daughter arrives home from Paris tonight for a few days R&R before she goes back to her Norwegian team. Glad I am not the mom!
How are you today post infusion and with the blood transfusion? Tell me again what your dosage is. My Taxol low dose last of cycle 8 is tomorrow. I have been lucky so far with blood counts. Think I mentioned earlier that my head to toe CT showed no progression in comparison with the last. My pain however has steadily increased despite a 25% increase in Metadol (Methadone). This is worrying and I am glad my MRI is July 4th. My MO says the MRI can show more in the area of the tumour~~axilla. I am now taking up to 4 breakthrough hydromorphone 8 MG tablets a day. I am to let the chemo nurses know tomorrow if it is still bad so they can let my doctor know in case she wants to come and see me.
Pbioi, infusion time for you too and I hope the icing helps this time. Both you, Rt_Chicago Lynne, I too have just the tiniest bit of peach fuzz too and it is quite light coloured. Fun!
leftfootforward, I also am not impressed by your waits. Our center is so on time that I am careful to get there promptly. Do you or others really think it is because your center is money making. That seems so wrong.
S3K5 and Snooky, it is crazy what Taxol can do and for icing I gather it can help in some cases but certainly not with Reynauds and depression with a higher dose sucks too. I have way too much pain in my right hand already and a lot of that is from bad circulation caused by the location of the tumour.
It is Canada Day next Monday so a long weekend. We are going to a yacht club group event that does not involve any sailing but lots of fun activities like bocce, horseshoes, a chili cookoff and more. Our older son and his partner are coming for which I am so happy. For July 4th do you also get a long weekend? Whatever, have a good weekend.
Marian
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PB, yes I do paint the nails with a dark color. Taxol turned my nails black when I got it 10 years ago and is doing the same thing now. I do the icing for neuropathy, hoping it works. I lost one of my toe nail with Taxol and it took along time for it to grow back. I hope I keep all the nails this time!
Marian, sorry to hear about your hand pain. Have you considered any local treatment for the tumor? Or is not accessible? I may have missed some of your older posts, so could you please let me know what kind of mets you have? Is it the bones? Or soft organs? Hope the MRI gives you some answers about how your mets are responding to the treatment. It's hard to go through a day with so much pain. My areas of bone mets do hurt a lot after Taxol infusions, and the pain specialist said it could be due to tumor flare. Do you think it could be similar type of pain for you, Marian?
Good to have a long weekend. Yes, we do get 4th of July off, which is a Thursday this year. So most will take Friday off and make it a longer weekend!
Leftfootforward, I had heard raving reviews about cancer centers in Seattle but your experience tells otherwise. Hope they resolve the issues with wait times. If you have to change, I am sure you have better options in Seattle (my daughter lives there, so I visit often).
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s3k5- the cancer centers are great. I had been going to this center/infusion center for years. It’s only been the past several months that things have been not so great. It’s s product of hospitals combining and having to merge systems I believe. Hoping that it gets better soon. You are right? Seattle has great options for cancer treatment.
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Loved ur positivity may special recovery for u
Ameen!0 -
50sgirl: If you have the link to the Abraxane thread , I would greatly appreciate it!...thanks !
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Stilts, Here is the link to the Abraxane thread. Hopefully, if you post to it, others will join you. I am sure you will find helpful information there from previous posts. Let me know if the link doesn’t work.
Hugs and prayers from, Lynne
https://community.breastcancer.org/forum/8/topics/840984?page=1
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Thanks 50sgirl
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12th weekly dose of Taxol and now I have a rash on the back of my neck and upper back 😩. I have not contacted MO yet. Does this mean I'm not tolerating this treatment anymore? I had two weeks off then the 12th infusion Thursday. I only take Benadry and Pepcid pre meds. I can't handle the steroids. Any suggestions
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Rt_chicago, it is difficult to say if the rash is because you are no longer tolerating Taxol. I think you should call your MO to report the incident. He or she might recommend additional Benadryl or some other medication or you might be asked to have the rash looked at. In my uneducated, unknowing opinion, it seems that so far it is not a severe reaction, and it seems to have taken some time to happen. Maybe the benedryl was helping to keep it at bay. At any rate, I think a call is in order since it is better to play it safe. Your MO might say it is not anything to worry about. If it is a reaction to the infusion, your MO can determine if additional premeds are needed next time or if other steps should be taken. Please let us know what happens.
Hugs and prayers from, Lynne
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Thanks Lynn. Leaving message now. Ugh
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I hope it turns out to be completely insignificant
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I spoke to my MO and he believes it’s photoallergic eruption from sun exposure. Praying that is the case. He called in a steroid cream and told me to take Zyrtec.
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I am glad you received a quick response from your MO. I hope the Zyrtec and steroid cream give you some relief. I am praying right along with you. I have read that Taxol makes us more susceptible to the effects of the sun.
Hugs and prayers from, Lynne
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Thank you Lynne. How are you feeling?
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I am feeling good. Thank you for asking. This is my break week, and it feels weird that I have no appointments. I am not complaining, of coutse
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You’re welcome 😊. I’m glad you’re felling well! Enjoy the week off and no appointments. 🙏🏼
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