Starting Chemo in Nov 2016

aterry

Hopeful88, I have neuropathy but it is milder than yours. My MO always asks me, "Can you still feel the floor?" I guess that's where she would draw the line. Interestingly, my fingers and toes/feet feel a little better after Taxol #10 than they did after #9. That seems completely counter-intuitive. I hope you make it through w/o it getting worse. Is there any difference in how your digits feel during the weekly cycle? Is it worse the first few days after infusion and does it ease, a bit, by day 6 & 7? I find that the swelling improves as the week progresses but the neuropathy doesn't change much. Walking helps me on days when I have enough energy to do, say, 30 min. Today it is snowing in NYC so I won't get my walk in.

I also sympathize with everyone having tastebud issues. During AC my taste & texture sense was wacko. Most foods made me nauseous. The first few weeks of Taxol my taste improved as AC receded from my system. Now, near the end, there are small problems but I'm not suffering as much as some have reported.

Hope88

Aterry, my feet feel like blocks when I walk. I feel the neuropathy keeps getting worse throughout the week. It is also more painful at night.

So, I was scheduled to get chemo today, but after talking with my MO, she said she wanted to give me a two week break so that my neuropathy could improve. She is afraid of it getting worse or becoming permanent. Then she reconsidered and told me I may have gotten the maximum benefit of chemo (4 AC and 8 Taxol). So I am having my surgery now! I was a bit thrown off since I was planning on May. I am not sure which type of surgery I will be having yet, but I meet with the surgeon next week. Depending on the surgery and pathology report, I may need to do those last 4 Taxols after surgery. At any rate, I will keep you guys posted.

Best of luck to you all getting close to the end of chemo. My thoughts and prayers will be with you all

aterry

Hope88, it sounds like your MO is quite thoughtful and really understands how serious your neuropathy is. Will you be having more imaging before you meet with the surgeon?

Hope88

I am going to call on Monday to find out if they want me to do some imaging before the appointment. I am fairly certain I will have some scans to help decide the best course of surgery. I am leaning towards a double mastectomy though. I always second guess myself so I kind of want the decision made for me. If the tumor has melted down to hardly anything, I would seriously consider a lumpectomy. See, undecided...lol

aterry

Hope88, I know what you mean about going back and forth regarding surgery choices. I do that at night which keeps me from falling asleep. I'm making a list of questions to discuss with the surgeon after the final imaging. I also kinda want the surgeon (in consultation with my MO) to just make the decision. A friend who went through this 2 years ago reminded me that ultimately the surgeon does make the decisions during the surgery when the patient is under anesthesia, depending on what is found. My friend had a lumpectomy but the surgeon ended up needing to take out more tissue than had been expected.

Hope88

I totally agree. My hope is that the decision will be easy. Fingers crossed!

aterry

Others have posted about nail issues with Taxol. I've been icing and that has helped a lot. The nails on both thumbs have started to raise, though. (Someone else used the term "raise" and it seems accurate.) I only have 2 infusions left and I hope I can hang onto the two nails for the duration. They did not turn dark. Only one fingernail and one toe nail got dark. They just loosened at the top and the loosening progressed down so now it is about half the nail. I keep the nails trimmed as short as I can to keep them from snagging.

Lou2016

Hi Ladies,

I also started my chemo Nov. I have been following this thread but never posted.

I finished my 4 x AC in Jan, it was every 3 weeks. I just had #5 of 12 Taxol with Carboplatin. So far my constant SE is ringing in the ears and my legs felt heavy from waist down. My MO advice that if my neuropathy gets worst we will stop the treatment. I have clear margin and chemo was just an insurance to keep BC from reoccurring.

My steroids is keeping me awake now because I napped during infusion and napped again when I reached home. I am probably in for a long night. I normally sleep at 11 and I am not sleepy yet.

Best regards,

Lou

aterry

Hi Lou, I haven't read much about the difference in experience between those having Taxol alone and those having Taxol with Carboplatin. Is Carboplatin also known to cause neuropathy? Last night as I was falling asleep (I also had trouble due to the steroids) I experienced the needles and pins sensation on the bottom of me feet. That was a first time for that particular SE. Since I have one infusion left I'm sure that my MO won't cancel. Did you have any heaviness in feet, ankles, etc, after Taxol/Carbo #4? or is this a completely new reaction? Also with the ringing in the ears; is that new? I hope the SE's recede a little as the week progresses. And I hope you sleep well tonight!

Lou2016

Hi Aterry,

I was put on Taxol with Carboplatin because of my age and I am TNBC. Carboplatin is known to be cardio toxic rather than to cause neuropathy. But during my AC I had mild tingling in my fingers which resolved by itself.

Hopefully your neuropathy symptom will get better soon and that you sail through on your last infusion.

Yes, I have the heaviness from waist down specially when I am climbing up the stairs. I try to climb stairs whenever I can as a form of exercise. The ringing in the ears is also considered as a sign of neuropathy as it is affecting the nerves in our ears and can lead to deafness. So far, I can still hear and it doesn't bother me yet

I also hope the SE's recede a little as the week progresses because I still have 7 more to go.

Best regards,

Lou

Pamela23

Welcome Lou! I had the heaviness too from Taxotere. I'm someone who regularly works out and just climbing a flight of stairs was taxing. I'm 8 weeks PFC and still have some deep pain (like when you are sore from working out) in my thighs when I try to crouch down or try to stretch out. It's getting better every week so there is hope!

Hope88

Hey Ladies,

Looks like I will be having a bilateral mastectomy in about two weeks. I meet with the plastic surgeon on Tuesday to discuss reconstruction. I should have an actual date soon. This has been a long journey, and now I am about to start the next phase.

For some of you who have been through this surgery, do you have any pointers?

BellasMomToo

I am almost 5 weeks PFC. I didn't have any problems with my fingernails when I was on chemo. In fact, my nails seemed stronger while I was on chemo. But now I noticed that my nails appear to be cracking horizontally on the nail bed. I hope they don't crack/break all the way through. I guess I should moisturize my nails more.

I also noticed that my left arm is bigger than my right. It occasionally feels a little heavy/tight. After my 6th round of chemo, I would get occasional slight tingling sensations in my left arm, usually when my body is warm like in the shower. I didn't realize it was (swollen?) bigger until recently when I put on a watch that has a fixed band. This band used to be loose before chemo. But since chemo I lost almost 15 pounds so the watch should have been much looser, instead it fit just right. My port is on my left side. Any ideas on why my left arm is bigger?

On the bright side, my taste buds are almost back to normal. And I lost that strange sensitivity to certain food textures (for a while potatoes felt like eating sand!) Also, my heartburn is gone and so is the excess gas.

Nanpop

Hi Hope,

I had the bilateral mx. Prior to the chemo. It wasn't terrible. I had the doctor keep me on a pump while in the hospital. I hardly needed it. I will be doing radiation next. Will you be doing radiation after surgery?.

Ella. You can have a blood clot or lymphodema. You will need to see your doctor asap. You need to go to a lymphodema specialist if you had your lymph nodes out. Ask your doctor for a prescription. They will massage the arm and make a sleeve for you.

Hope88

Hey Nanpop,

I haven't heard from you lately. How have you been doing?

Yes, I have to have radiation after surgery, but I wish I didn't. I would like to have the surgery and reconstruction at the same time. They tell me that I will go for 6 weeks. Nan, how long do you need to go?

I hope everyone else is hanging in there.

Pamela23

BellasMom-- I agree with Nanpop, call your MO tomorrow and tell them about your swollen arm. This happened to me in Jan and they sent me for a doppler ultrasound to rule out a blood clot. Ended up being lymphedema. I'm getting physical therapy through a therapist who specializes in lymphedema and I get lymph drainage massages twice a week on that arm. She also ordered me a sleeve to wear while exercising or if I ever travel by plane. Like you, I felt I had really strong nails during chemo too, now 7-8 weeks PFC I'm seeing my big toenails starting to get lighter under them like they are lifting from the bed as well as the sides of my thumbnails. Hoping it stops and they just grow out instead of falling off. SO tired of becoming more and more defeminized!

BellasMomToo

Thanks NanPop and Pamela. I will call my MO's office tomorrow. I haven't had surgery yet -- my mastectomy & SNB is scheduled for March 27th. I wonder if it's neuropathy cause I started getting some mild numbness/tingling in that arm after my 6th and final round of chemo.

But I will call tomorrow! I just hope it isn't something that will delay my surgery.

BG46TN

Welcome Lou! I am also triple negative....but I did AC and now on Taxotere.

My last Chemo is one week from today!! I"m sooo excited!! I met with my MO Friday and he's happy with my progress, I feel pretty good (except the first week after chemos) I will have a bilateral mastectomy in April....I should get date this Friday when I meet with my breast surgeon again.

My MO said he is really hopeful of a complete response for me....so I"m praying for that! but if the pathology comes back with any residual cancer he will put me on Xeloda for a few months (due to the triple neg)..he said there have been studies with great results on women with residual cancer and taking xeloda...he said it can raise your survival rate by 6%....I'll take it! (but really hope I don't need it lol) It is an oral chemo...but he said side effects are minimal on it (mostly hand/foot skin issues)

I asked him about Copper Depletion since there have been some studies on that and TN cancer...but he didn't know much about it but was very interested, he told me to bring him the study I found next time.. I also forgot to ask him about Metformin, its a diabetes drug that has had good results also with TN breast cancers...

all in all a great appointment...I"ve been feeling great lately, other then being tired, no other side effects right now so I get a break for 7 more days LOL I usually have my chemo's on Fridays but I changed my last one to Monday since I have my nieces wedding on Sat :-) First grandchild in our family to get married so I wanted to be feeling great for it!

Here are some articles on Copper Depletion and Metformin in case anyone wants to read about it.

https://meyercancer.weill.cornell.edu/news/2016-04...

http://news.weill.cornell.edu/news/2013/02/copper-...

Metformin:

https://www.ncbi.nlm.nih.gov/pubmed/25213330

https://ww5.komen.org/uploadedFiles/_Komen/Content...

Article on Xeloda for residual cancers

http://www.breastcancer.org/research-news/xeloda-i...

BellasMomToo

As promised, I called my MO's office yesterday about my slightly swollen arm. So today I had my ultrasound that showed a blood clot near my port. That prompted an immediate appointment with a vascular dr.

The vascular dr prescribed blood thinning medication that is given via injection. I now have to give myself injections 2x a day, for at least 3 months but possibly 6 months. He also prescribed a compression sleeve. He is trying to get a hold of my BS about my MX that is scheduled for next Monday. The vascular dr. thinks I should postpone, but I don't want to cause next Monday is already 6 weeks PFC -- my MO told me earlier not to delay surgery for too long because the cancer may come back.

I don't think I mentioned that two weeks ago I was hospitalized for 4 nights for an abscess on my colon. Just when I think things are improving, other things go wrong. Uggg.

ETA: Now I'm re-thinking my port. If I get my port removed, I think that removes the clot. So having my remaining herceptin infusions w/o a port may actually be easier on me than injecting myself 2x a day for 6 months.

BG46TN

oh wow Bellasmom!! I'm sorry you have to deal with all that!! I think I agree that I would opt to remove the port (and the clot) instead of injections...and it will prob affect your mastectomy since blood thinners could be dangerous while having a major surgery...

I'm glad you called and went in!!!

Pamela23

Has anyone lost their taste and still don;t have it back? I'm 9 weeks PFC and still can;t taste flavors. Getting nervous, don't want this to be permanent!

BG46TN

HI everyone!

I had my last chemo yesterday :-) yay!! My twin sister surprised me and showed up to sit with me (my husband had to get the kids off to school etc since my appt was early) it was so nice, made me cry, she showed up with balloons, a basket full of "pink" goodies, and pink donuts! Then we went out to lunch after to celebrate, the guy at the next table overheard us talking about my last chemo and he bought us drinks (offered alcoholic but since I can't drink lol I took an iced tea) there are some really nice people around...even our waitress gave me a hug before I left :-) I Had brought a Last Chemo sign with me, and my friend gave me a shirt that says "Straight Outta Chemo" LOL everyone loved it! the nurses said it always makes other patients feel good to see someone get to the end....

I met with my breast surgeon on Friday and My surgery date is set for April 17th! ack...now that its planned it seems so close!! The good thing is I am off work (teacher) the week before for spring break so I have time to get ready at home, and get my kids all situated for when I return....

I have to go in on Monday to have preop testing....and have to go in the day before surgery for the lymph node mapping (which will be Easter....hmmm wonder how that works...the hospital I'm having surgery in is about an hour and 15 min away.....I wondered if they would even do it that day, but the nurse said the hospital is alway open...so yup LOL (I knew it was always open, just didn't think they did planned tests etc on sunday, let alone Easter ha ha)

now I"m going to start getting anxious about surgery...I've NEVER had surgery before and never been under anesthesia...so I"m a little nervous...

Pam, sorry you still don't have your taste back! what does your dr say about it? I lose mine for about a week after chemo, but then it comes back...I hope yours starts to return soon!!!

amw5

BG46TN - Congratulations on your last chemo.

amw5

BG46TN - I pray you have a smooth surgery. (((hugs)))

Pamela23

Bellasmom--I am SO sorry you are going through everything you are. I hope you get some answers. I feel like we just keep getting kicked when we are down with this disease. I am so glad you were proactive on it. I didn't realize you hadn't done surgery yet so of course it wouldn't be lymphedema. I hope they come up with a plan that you are comfortable with. I understand your MO being concerned about not waiting too long but don't let that be a deciding factor. Be more concerned with a blood clot right now that you want to dissolve since that's more threatening right now. Cancer took years to develop and they are going to remove it surgically. Do you know what grade your cancer is? Did you have a history of bowel problems, what caused it?

I'm on my last week of radiation and was looking forward to being able to heal and my GYN just found a polyp on my uterine lining that I need removed which involves going under. Then 2 weeks of no lifting, blah, blah, blah....enough that this is considered outpatient surgery with MORE healing. My poor body. Just hoping it's benign. She said they usually are but I won't know until it's tested. It's always something!!

Hopfull2

BG46TN, congrats on finishing.

BellasMomToo

Pamela, my tumor was grade 2. I never had a problem with my colon, but my routine colonoscopies (I'm 56) showed that I have diverticulosis so I'm mindful of my colon. None of the Drs. can say what caused the abscess. (It could have been caused by chemo.) But they all acknowledge that chemo probably made things worse.

And thank you (and Nanpop) for encouraging me to seek medical attention which discovered the DVT. I'm so sick of medical appointments that I tend to play things down and take the 'wait and see' approach. Sometimes I need a kick in the pants.

I had my MX on Monday (posted details in the March 2017 surgeries thread) and fortunately things went smoothly. I came home from the hospital yesterday and have hardly any pain. I get to shower today and have to summons the courage to take a good look at my incisions (staples). I never had surgery before.

Good luck on your polyp removal. I agree, with cancer/chemo there always seem to be something else happening. ugggg.

BG46TN: Congrats on your final chemo! I would have loved to see your celebration. Try not to stress about your surgery. My MX was my first surgery too and our doctors & nurses know how to take care of us. I look at surgery as just another step toward completion.

BG46TN

here's a picture of my twin sister and I at my last chemo on Monday! she surprised me by showing up there...about an hour and a half away from where she lives

aterry

BG46TN, congratulations. I have my surgery scheduled for the day after yours. I've seen many familiar names from this thread over on the April surgery thread. So this surgery will be a 1st for you! You must have had very good health!

Pamela, the taste bud issue is worrisome but I think the tastes will come back, perhaps one by one. After my MIL had radiation for jaw cancer she lost all taste. Sweet was the first to come back for her and then salty and then bitter. My taste buds have been affected but not to the same degree you're experiencing.

I'm technically 8 days PFC but for a week I kept myself from thinking about any positive changes because I assumed that the first 7 days would be normal side effects and they were. Yesterday I had tingling in my finger tips and a very tiny bit less numbness. The other SEs are the same but at least now the level of chemicals in the blood is receding and it's not unreasonable to think improvement will start. My MO warned me that it takes time for nerves to regenerate so I need to be patient.

Nanpop

Hi Terry, I am glad you finished your last chemo. I am 4 weeks PFC and I feel better each day. I am getting ready for my next surgery. I am getting my ovaries out. It supposed to be an easy surgery but still scary.

Bellasmom, I am glad everything is working out.

This is a long process and my emotions keep going up and down. I try not to go online too depressing. I wish you Luck on the next part of the journey.