Weekly Taxol group
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Allison, edema is swelling. Swelling of feet is called pedal edema.
AJ, I hope you feel better!
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Hello
I had my last AC last week and I will be starting weekly Taxol on August 26th. I would love to be a part of this group to share experiences.
Nice to "meet" you all!
Jenn
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yeah Karen and Allison! I,m sorry so many people are struggling with neuropathy and MO's that won't listen That must be very hard!
I had a strange symptom this morning. I got up because I couldn't sleep and grabbed my iPad to check the boards here. While checking, My vision went totally blurry, and the page got totally distorted. Then I started to see bright flashes of light. It freaked me out so I shut off the iPad. I tried to get up and go back to bed, and I got dizzy and disoriented and had trouble walking back to bed everything was so off kilter. I made it, and just closed my eyes and rested for 45 minutes.Now I'm fine. What the hell was that? Should I call my MO about it?
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Tresjoli, I would call. It could be nothing, but you'll feel better if you call and tell someone, yes?
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I agree. Call!
Nice to meet you, Jenn. I love Charlotte. Lived there for a few years back in the 90's.
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Tresjoli, I had blurry vision on Taxol but nothing to the extent you described. I read somewhere that this could be a form of neuropathy.
I agree with others - I would call the doctor.
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tresjoli - that sounds like the beginning of a migraine. Since you didn't get a migraine I would talk to your MO about it. My vision has been crappy since chemo. I've always worn glasses/contacts for distance, but now I need readers. It could be my age, but it's weird that it hit me while on taxol.
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It does sound like migraine aura a bit - I get the flashy lights and then never a headache. But I have gotten them regularly since I was 18. Definitely worth a call to the MO!
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Hi everyone, this is my first post. I'm starting 12 weeks of Taxol and Herceptin next week. I'm told I have a good likelihood of not having complete hair loss and am looking for others' experiences with this protocol. How was it for you with hair loss? What should I know about increasing the likelihood of keeping my hair? If I can't color, etc, what are some good strategies for keeping a professional look as I go through this.
Very open to other info/strategies with other side effects as well. Thank you!
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Welcome Love..... I do not have experience with just Taxol... I had AC first so all my hair left the building during that!! But I think with only Taxol your hair can go from just thinning quite a bit to all gone! I had a friend who did Taxol only and she could still wear a ball cap and it looked like she had hair..... but most of it was gone on top. I think Taxol is totally unique to each person.... I was told my hair would start to grow back during taxol and it really hasn't yet, but some people it grows like crazy. Unfortunately I would prepare for the worst and hope for the best!!!
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Lovestrees, I was on Taxol/Herceptin only and I was told I would lose all my hair. I ended up doing cold caps and saved most of my hair. I don't look like I had chemo now that my eyebrows and eyelashes grew back. I estimate I lost about 10-15% of my hair.
If you'd like more info, there is a thread for it - just search for "Cold Cap Users Past and Present, to Save Hair". You can also PM (Private Message) me.
BB
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Just finished Taxol #8 - still here with my cold caps on. I have been having horrible pain in my neck and chest like I did when I had blood clots so they are sending me for a Doppler this afternoon. Already taking blood thinners so not sure what they will do if there are clots. Can't wait to get that port out!
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I had Taxol/Herceptin only and lost about 95% of my hair. My doctor said he's only had two patients keep most of it. If you're really wanting to keep it, cold caps seem the way to go. It wasn't worth the hassle to me, though.
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Mel: I am sorry. That must be so scary. I had a blood clot in m heart too and am taking bloodthinners. Just curious where your port is? I was told you are more likely to get a clot if it is in your arm, which mine is.
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Ladies - thoughts on port - they are having to get the blood draw in my arm each time as the port isn't giving blood anymore - it's taking chemo just fine though - well, if they have to stick me anyway, I can get the damn thing out when I get my surgery right?? I have a year of herceptin (only 14 infusions!!)?
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Love I am on week 8 of taxol and while my hair is very thin, and I cut it short, I could go around without a hat or scarf on. I just started wearing hats and scarves this week. I have not shaved my head. I won't unless I get bald patches, but so far the hair loss has been even. I'll see if I can take a picture to upload for you tonight. I'm not sure it will survive another 5 infusions.
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Princess - how long has it been since they have been able to draw blood through the port? My understanding was that they had to have the blood return in order to use the port for the infusion. The two times mine didn't, I had to sit with a medicine to dissolve a potential clot. I don't want to alarm you! I hope others weigh in on this!
#11 for me today. Post-chemo imaging on 8/26. I can't believe I'm almost at the end of chemo.
Barb
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Past 2 times it doesn't come out - but the infusions go just fine? They did the dissolve medicine once but it still wouldn't return? I had the head nurse in there. They said it was fine - and the medicine went in and went somewhere ;-)
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Ok - good. Maybe it's just a difference in procedures at different clinics. I can't wait to be done with my port- although my chemo nurse did recommend leaving it in for surgery. I agree with you - if you have to be stuck for bloodwork, just do the infusion there as well.
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Oh wow I have like 4 pages to catch up to! So I'm going to skim as much as I can
Keep on chugging along ladies!!! We're all getting there little by little. And congrats to everyone that's finished in the last two weeks!!!!! PARTAYYYYY!!!!!!
I have #6 on Friday... YAYYYYYY. Can you sense the sarcasm? I am ready to be DONEEEE. My MO's NP came in last week when I had my appt to see my MO and she was like "Ok, the next 4 or 5 are going to suck big ones. You're going to be annoyed. You're going to be cranky and bitchy. That's normal. Then the rest will be smooth sailing." I joked and said if I get any more cranky and bitchy I might hurt someone soon!
My treatment center has private rooms but mainly for high risk patients or ones doing clinical trials. We have 5 or 6 bigger rooms that each hold 4 patients and 1 nurse. I actually like the 4 person rooms because you still somewhat get to interact with people. I make sure to try grabbing a window seat if I can to at least get some sunlight while I'm in the chair. When I had a blood transfusion last week I went to a different treatment center (in the same hospital chain) and it was individual rooms. It just seemed so 'hospital-ish' and depressing.
Plus we have amazing volunteers that come around with all different kinds of stuff to cheer us up. My fave is still the service dogs that you can cuddle.On the plus side of this (ha!), my company just announced that we're now allowed to have flexible schedules to try to save on sick/vacation days. So I'll be working 10 hours Mon-Thurs and I won't have to use a vacation day for treatment on Friday. (I've applied for FMLA but you have to use all of your sick and vaca time first before it kicks in). I have a desk job so it's not too strenuous and I can do the last few hours working from home at night. I will 100% be using those newly freed up days for some sort of tropical vacation!! So glad this just kicked in bc my manager had emailed HR previously about this same exact schedule and they told him no. And I'm so glad my manager, director, and SVP have been so understanding. Only my manager really knows the details but the others up the chain have been great too.
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Loves,
I had 12 wks of Taxol/Herceptin and was told by my doctors at UCSF that if I didn't cold cap I would lose all my hair. I cold capped and kept my hair...on my head but lost all the rest of the hair on my body including eyebrows and eyelashes. All of that can be cosmetically taken care of, except the hair no one sees. Anyway..this is me mid chemo....using cold caps
Below is me...now 4 months past final chemo, two hair trims later...as my hair grew quite a bit during chemo...you cannot cut it during chemo...nor do they want you to color it..so I was pretty grey around the roots by the time I got done..you have to really baby your hair but it was very worth it to me. There were times it looked limp as I wasn't using any product etc but hey, I had hair!!! At least on my head!
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Hi everyone -
I just finished week 9 of my 12 total weekly taxol treatments and would love to be part of this group. Question for you all - after week 8 my feet & ankles started swelling and is now a daily event. They start out somewhat OK in the morning but by the end of the day, they look like bricks! My oncologist says elevate, watch salt and drink water and could be a side effect of the taxol. I saw a post or two about swelling and wondered if anyone else has experienced this, and if so, was there a way to manage it and when did it improve? Thanks very much !!
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Hi Splash-
We want to welcome you to our community here at BCO. We're sorry for the circumstances that bring you here, but we're glad you've found us, and hope you find the support you need!
The best way to manage swelling is like your onc said, drink lots of fluids, cut back on salt, and elevate your feet when you can! You can also try spending some time in a pool, that seems to help as well!
We hope it starts to get better soon!
The Mods
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My feet swell and I have numbness in my heels and tips of toes. I also have it in my fingers and typing is an issue. I have only had 3 treatments in four weeks because I got strep throat and had to postpone a week. I go for #4 on Friday and if they don't decrease my dosage, I may just walk out and never return. No kidding.
Tomorrow is the 1 year anniversary of the worst day of my life: the day I was told I had cancer. It's also moving day, so hopefully I will remain distracted and forget.
Congrats to all that are finished! Hip Hip Hooray!!!
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Suladog- you are a great testament to cold caps! Your hair is beautiful. I now wish I had given this more thought... I am 3 weeks post last Taxol and I have white curls around my ears and very sparse white and dark hairs on top of my head. I lost my eyebrows and lashes this week... wish there was a way to prevent that!
Lovestrees-as you can see from Suladog, cold caps are worth considering! I think it is rare to keep your hair through Taxol without trying cold caps. My infusion nurse said it can happen but I didn't have thick hair to begin with so I didn't have high hopes. I lost about 95%, and most of that was after the halfway point; I think with AC, you lose it more quickly. I know what you mean about wanting to look "professional". I think I tried to keep that up but then it became less important as I moved through treatment. I accepted what I was going through and didn't try to hide it. I was lucky in that my skin got very smooth and glowy so I did my make up nicely and felt more comfortable in a bald head. I got a wig, but don't find it comfortable. (hot flashes, August heat) Scarves are great to coordinate with an outfit, tie them in a low bun and it can look great. Get pretty earrings. My daughter is very supportive and encouraged me to go without anything saying "people just need to get used to seeing women without hair". Keep smiling... chemo can take our hair, but not our smiles and a smile is what makes a woman beautiful. I wish you well during your treatment.
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Jenn... WOOHOOO about your job! That is great! I have worked steadily through all this and only take off on Thursday afternoons now. I did have to take PTO and FMLA.... I swear the HR dept at work watches me like a hawk.... If I go to the bathroom they mark it down as FMLA time... LOL You are so lucky your job is so accommodating!
#9 for me today!! Jenn, I did find that #6-8 were really tougher, you just want it DONE! This week wasn't so bad, If these fingernails and toenails would stop aching that would be great..... but I can see the light at the end of the tunnel. 3 more after today... that's what I keep chanting!!!!!
The Hair issue is such a tough one. I did not even consider cold caps because no one has ever done it at my center and my MO is not a fan. It def has been one of the roughest parts for me. I am soooo ready for hair and eyebrows and eyelashes...... it seems like it's been forever and it seems like it will last forever!!!!
I have started to swell a little too... what is up with that?? Mostly my hands.. fingers... especially after I work out. I have sausage fingers!!!! LOL
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Trvler -My port is on my right hand upper chest. It turns out that I still have a minor blood clot from before that has never totally dissolved. It seems like the pain in my neck is worse, but at least I had it checked out.
This is my second port. Princess I am surprised that they will give you treatment without blood return. Mine wouldn't and I had to do the dissolve thing twice. Then they sent me for a portagram and decided I needed a new port. So I am on my second port both on same side and now have two incision scars. The new port works much better though and always gets blood return. Also with the old port I had a ton of pain everytime the accessed it or took the needle out. Now it doesn't hurt nearly as much.
I use cold caps and it is a ton of time and dedication. However for me it was worth it. It helps me tremendously to go about my life and not have everyone know I have cancer. My hair has thinned but it is really only noticeable to me. The AC was the hardest on the hair. The Taxol isn't as hard but my hair still has the residual AC effects so it is still thinning.
After chemo yesterday I now only have 4 Taxols left. I feel like I can finally see the light at the end of the tunnel. People used to say it will go by so fast and I wanted to punch them. It has not gone by fast. I started chemo at the end of April. It is a long time to not feel all that great. Even on good days it isn't like I am 100%.
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I had to sound like a broken record, but Princess that does concern me that they are giving your infusion without getting a blood return. I've had to get the dissolving agent before but they specifically told me that the were not allowed to use the port if they can't get a blood return.
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I am having more and more swelling as time goes on... I did call my MO's PA today to tell her about my vision and the distortion and dizziness. Her response" Well, I don't want to panic and jump to conclusions". Let's wait and see if it happens again. Ummmmmm what does THAT mean?
Erghhhhhhhhh
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I have the swelling, too; it's worse in the heat. Had a lymphedema consult last week (I have not yet had surgery) and they want to go ahead with treatment. I asked if we can at least wait until I see the surgeon next week and find out if/when that is to happen.
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