Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
-
sjacobs so glad you are on the mend.
day 6 here after TC #1 and feeling worse. joint pain and exhaustion worse. added heartburn and stomach pain. added significant lower back pain during the night. no fever. maybe it is the aleve I was taking? switched to tylenol, added prilosec and tums. really hoped to be on the mend by today. any ideas would be appreciated. anyone else still quite bad on day 6? anyone else start chemo already having fibromyalgia?
0 -
I had to stop that chemo because of burn reaction....but I still have horrible muscle pain on my new one....I had to resort to pain Meds. It's the only way I can manage honestly
0 -
ratherbe... you can prob chalk up the joint pain to the neaulasta (low back pain, too). I felt that the worst around days 6 & 7 for both rounds in terms of any bone/joint pain. Though, it was low back pain on round 1 and mostly upper leg pain on round 2 ... both similar and increasingly got worse the eveing of, then dissappeared by the next day. Based on the bone pain others have spoke of, I feel I have been lucky. Hopefully you will be similar andfeel better by tomorrow!
0 -
Toby, Sorry you are having pain with your second chemo protocol. What did your MO say? By the time my last infusion came around, I had pain that I can only describe as deep pain in my bones.
0 -
Oh, Toby not again!!! I am so sorry.
0 -
well,it's better thane hands and feet red, swollen amd then peeling. The pain is like after neulesta. When I wake up I groan from pain in the shoulders and arms. Then it resides in my thighs. Deep muscle ache.
I will survive!!!!
0 -
Tobycc: so sorry to hear you are having such pain, I hope today is better.
I would really appreciate some advise from this forum. I have had fibroymyalgia for many years which is very well controlled by B vitamins and acupuncture. I never need pain meds and only occasionally have a few days when I have to slow down from tiredness. Other than that I am able to have a busy active life. After TC#1 and neulasta on day 2, by day 4 I was completely exhausted with full body aches. By day 6 I went into a cycle of severe severe pain (mostly lower back and knees) which I had never experienced. Felt like fibromyalgia pain times 100 or more. The full body aches and exhaustion continued to worsen. By the end of Day 7 it was continuing to be severe. I also developed bad heartburn and stomach discomfort. I had done everything ahead and during the week recommended by MO and this forum. On Day 8 severe pain was gone, exhaustion and full body muscle aches continue. Not able to go back to work.
Saw MO yesterday and he said my reaction was highly unusual. I wondered if the taxotere and/or neulasta had sent my fibromyalgia into overdrive. I did a little searching on this site and saw that some women with fibromyalgia continued to get worse with chemo, and some never improved even after it was over. Considering how well my fibromyalgia was managed with minimal intervention before I can't consider that an option. Can't take pain meds and do my job so that isn't an option. Other traditional meds for fibromyalgia did not work for me in the past. The MO gave me a few choices and I need to make a decision this week. I can stop all chemo. (chemo is getting me between 5 and 8% reduction in distant metastasis in 10 years according to studies). I can try TC again without neulasta and instead follow my counts and have neupogen shots as needed (same bone/muscle pain but maybe less so he thought). I can switch to AC or CMF (both would require a port as I don't have enough veins left, nurse blew two on TC #1 even tho I have great veins). From what I've read on this site women still have significant myalgic pain from AC and CMF during and post treatment so I am concerned about switching.
I need to figure out the relationship between fibromyalgia and TC, AC, and CMF and neulasta/neupogen. MO and I can't seem to find much research which doesn't make sense - women get BC, women get fibromyalgia, there must be information out there.
Any ideas for resources, your personal experience, information would be greatly appreciated. I need to weigh the benefit of chemo against long term risk to the fibromyalgia permanently worsening. I am the one to make this decision, I just need as much information as possible to help me do so.
Hoping all are feeling well this week.
0 -
Ratherbecooking - Sorry that you are going through this situation with the fibromyalgia. Here is a link on a another discussion thread here that you may want to read or even perhaps post your questions there..https://community.breastcancer.org/forum/69/topic/....
From my very quick reading, some have seen a rheumatolgist and have been prescribed Lyrica. If you are wondering what may be the possible cause of your flare up, it may be from the Taxatere. ( http://chemocare.com/chemotherapy/drug-info/doceta...).
You may want to talk to your MO if it is possible to reduce your dosage of the Taxotere.
Just so sorry that you are faced with this kind of situation and the decision that you need to make.
0 -
Wishing each of you a very peaceful and calm holiday !! For those still in chemoland, wishing you minimal side effects. Keep breathing and take a step back see the wonderful people and things around you. That is the gift this holiday season that I hope you see. Hugs......
0 -
Melrose - thanks for the holiday wishes. You have been such an anchor with this site. We're all grateful for you. So sending hugs back at ya.
0 -
I hope that everyone who celebrates had a wonderful Christmas yesterday. Words of wisdom from my mother: Christmas is not a day, it's a season. Enjoy!
Just wondering if anyone has experienced itchy feet? From time to time my feet get awfully itchy, especially the soles of my feet. I have been keeping them moisturized so I don't think that it is dry skin. It comes and goes, they're not itchy all of the time.
0 -
Melrosemelrose: Thank you for your kind response and the link.
I have been able to find out more about fibromyalgia and chemo, and hope it is helpful to others with fibromyalgia. It appears that any trauma can make FM worse, and that surgery, chemo and radiation are all known to possibly increase FM symptoms. Sometimes the symptoms are cumulative and do not abate after the cancer treatment is over. That is the part that is most concerning for me. I was told to start Cymbalta, as it may help mediate the effects of the chemo and radiation on the FM, and to take a higher dose of the naproxen throughout treatment also.The idea is to avoid any pain so as not to aggravate the pain cycle. It is now 4+ weeks since my first TC treatment and I am taking the Cymbalta. The pain and aching ended, but the exhaustion continued longer. I am now about 75% back to my old self. I've decided to try TC one more time, and see how I do. As chemo #2 was supposed to be at 3 weeks, I don't want to delay any longer, so I will be back to chemo on Friday, and hoping for the best. We are also going to skip the Neulasta shot this time, as it likely made the joint pain even worse, and monitor my white blood count. If the count goes down, we will use Neupogen, which is a shorter acting version of the Neulasta, which will hopefully cause less pain.
Hoping all others currently in chemo are doing well with minimal side effects.
The best in 2015 to all.
0 -
Ratherbecooking- Thanks for checking in and letting us know how you are doing. Hang in there!!!!! Hopeful that things will settle down and you can have the second round of chemo. I know that some oncos prescribe antibiotics to their patients rather than going the Neulasta route. I also know of some who were able to go through chemo without the Neulasta or Neupogen. Hard to predict what can happen since everyone reacts differently. Again..... hang in there..... we will be with you on Friday for Round #2!!
0 -
Melrosemelrose: Thank you for the support! Really appreciated!!
0 -
Ratherbecooking, Hope you can avoid the Neulasta! As Melrose mentioned, I am one of the fortunate ones who never had the nasty Neulasta... my body rebounded with out it.
0 -
PoppyK : Thank you! I'm hoping to avoid the short term neupogen which would likely have the same effect also....
0 -
My last round of CT was Nov 23. I have a lot of soft baby hairs sprouting all over my head.... and my eyelashes and eyebrows are still shedding. This chemo stuff is crazy!
0 -
Ratherbecooking- Just checking on you to see how round 2 went. Hope you are doing okay.
PoppyK- Ahhhhh..... soft downy little hairs........The mighty hair returneth!!!! Yay!!!!
0 -
Melrosemelrose and PoppyK - thank you for reaching out and checking in. Friday's CT#2 went ok. We insisted on an experienced nurse and the IV insertion went well. Tired, and a little achey and nauseous since then. Main issue has been stomach pain from the high dose of naproxen I'm taking to try to interrupt the fibromyalgia getting worse. Going to try new GI med to see if that helps. I am willing my WBC to be high tomorrow so I can avoid the neupogen shot - don't want to deal with that joint pain again. Amazing help and support from family and friends, we are all so fortunate to have people who love us around us.
PoppyK - so happy for you that you are done with chemo! and hair coming back in! I hope it grows in exactly as you are wishing.
0 -
positive news here: no neulasta or neupogen and almost no pain this time. I am now convinced that the neulasta caused the severe pain that made my fibromyalgia so much worse. my counts are down but not too far, so hopefully they will rebound soon. just feeling quite tired, but less than CT #1 when I had all the pain.
less good news: while the nurse did get a good IV spot, I've developed a superficial thrombosis in the vein. No blood clot or DVT, which is good. using heat on it. has anyone else experienced this? was it from the CT? how long did it take to resolve and could you use that vein again?
has anyone used a vein in the leg if the arm veins weren't working for the infusion? or used the arm that had lymph nodes removed?
hair question: hair fell out a few weeks ago so I had it buzzed. now there are areas that are red and it looks like it is inflammation of some of the follicles. anyone have any ideas for making this better?
many thanks in advance for all the advise from the forum
0 -
Hi Ratherbe,
My IV was fine for the 1st of 4 rounds. The next 2 seemed to wreck the veins. 4th time, I had a PICC line placed and that went fine. Nurses removed it after the infusion. The skin over the veins that got clobbered during rounds 2 and 3 turned a deep red, and that is slowly healing. My oncologist said the veins will regenerate.
Hope that helps, and I'm glad to hear you didn't have to put up w the joint pain.
0 -
I had my last treatment 4 weeks ago, and I still have no energy. My legs feel like I just ran a marathon making it very difficult to do much of anything. My fatigue is just short of overwhelming. I had no idea it would take so long to recover from chemo. Have others had this experience
0 -
Has anyone had TC for 6 rounds? I am having scheduled for 4 rounds, but asked about 6. If anyone is doing 6 did you find out what the long term side effects are for 4 rounds vs 6 rounds and what the advantages are of having 6. Any info would be greatly appreciated. Just want to make sure I am doing enough since I did not want to do the ACT due to heart problems that can occur..especially since I have very high blood pressure. Also is radiation almost always given if you have one positive sentinel lymph node out of 17. I heard you are at a higher risk for lymphodema if you receive radiation. And what can radiation due to reconstruction?? I currently have a tissue expander and will go for implant when everything is done.
Thanks again for anyone who can share any info.
ThinkingPositive (all the time)
0 -
Ratherbecooking- Yay for the no pain and no Neulasta/neupogen!!! Sorry about the vein situation. I had a port but there were a few times when they couldn't draw blood from my port and had to find a vein. I was told by the infusion nurses to make sure i hyhdrated the day before the infusion to help keep those veins plump. You may want to avoid having the infusion in the arm with the lymph node biopsy. I no longer have any kind of blood draws, shots or have blood pressure taken on my left arm. As for the scalp situation, I remember that I had some clogged hair follicles as that hair fell out. I used Neutrogena T Gel shampoo ( just a little since i didn't have much hair) which seemed to help my scalp. The rest of the time I used Aveeno Baby Conditioning Shampoo.
Tommytoo- Unfortunately there is not switch that tells your body that you are ready to go and you aren't having any more chemo. I know that I moved rather slowly for at least several months after I finished chemo. Yes, it takes time for the body to recover and it varies from person to person. I used to shuffle when I walked and ached anytime i stood up after sitting down or lying down. Keep taking care of yourself and slowly but surely, you will start to feel better. If you are extremely fatigued, you may want to have your red blood cell count checked. You may be anemic from the chemo. Hang in there!!!!!
ThinkingPositive- I had 6 rounds of CT and never questioned my onco about the number of rounds. I guess it was because my case had gone before a tumor board and this was the recommended treatment plan. I did not ask to have fewer rounds of chemo probably because I tolerated the chemo okay. I know there is an older chemo thread that discussed 4 rounds versus 6 rounds. I don't think there was any clear consensus as to how many rounds one should have. Everyone's situation is different and the oncos for each have different views on the number of rounds of chemo. . I can't answer your rads questions since I did not have rads.
0 -
Tommytoo, I finished chemo 3 weeks ago, and I'm still feeling fatigued, especially after a long day at work. Hopefully my energy will return after I finish rads.
0 -
folliculitis: (in case this helps others, who have been so helpful to me!): after CT #2 I developed what looked like pimples on my scalp - some with white heads. They spread after a few days. Read about it online and it seems common with chemo. I was concerned it would continue to spread or get infected. The regimen that seems to be working for me, done 3 times a day: wash scalp with hibiclens, rinse, then dry scalp and put antibiotic ointment on the eruptions. A few hours later, but cortisone cream on the eruptions. Wash hands carefully and change washcloths between each step. I couldn't do this myself because I can't see where all the spots are, so my very kind teenager did this for me. I don't have any new spots, and the ones I have seem to be getting calmer.
0 -
Just want those who are new to Cytoxan/Taxotere chemo and checking out this thread for support and help, this thread is still active. If you have questions or want prior posts with suggestions, reposted, please post your questions/request for reposts here.. We are here to support you!!!
0 -
an update from "down the rabbit hole" as I've decided to call chemo.... had CT #2 1/9 and saw MO yesterday and neutraphil "dangerously low" (and I was feeling so good this time!) so had neupogen shot yesterday and again today. so far my knees and lower back ache, same spots as after neulasta but not as severe. this time I am determined to "get ahead of the pain" so will take the pain killers I refused last time. good news is we had the head nurse look at my arm (she seems great), and she thinks there is a vein for CT#3 and maybe #4,which was a big relief as I'd like to avoid a PICC or port at this point. and the fun continues. halfway done and trying to keep my eye on the prize.
best wishes to all fellow travelers down the rabbit hole for good veins and very few SE
0 -
ratherbe: sounds like you're managing well. Just 2 to go!
0 -
ratherbecooking - I had my first CT treatment on 1/8. Neulasta shot on 1/9. Some bone pain but Claritin & Tylenol seemed to work well. Levels were a little low last week but where the MO expected them to be. Had blood work again today. I'm feeling great so hoping levels went up
I'm also going thru treatments with no port. First IV went great. Hoping for 3 more good ones! Congrats, you're half way there!!! Hope all goes well. ♡ Kim0
