Weekly Taxol group
Comments
-
Honeybair,
I developed dvt and pe during my AC treatments.
After the first one I had pain in left calf, had an ultrasound which was -ve for dvt. The pain resolved in about ten days.
After the second AC, the same thing happened with my right calf. Again ultrasound, again no dvt seen, but the radiographer did say there was superficial thrombophlebitis. I was sent home with no advice. I didn't see the doctor as she was with another patient by then, and I guess she saw -ve dvt, and said fine!
I researched dvt in relation to chemo, and could find nothing on the internet. I found it related to cancer generally, and related to central venous access devices. I had a port inserted that week! I was concerned that the superficial thrombosis could spread to become dvt!
So I had my AC #3, and a few days later developed groin to knee pain. This time there was no doubt. Dvt from groin to below knee! About a week later I had a spiral CT "to rule out pulmonary embolism", and eventually heard the result: multiple pe affecting both lungs. Well no wonder I was feeling so wretched.
I was told I could not have warfarin etc orally while on chemo, so I am on daily Lovenox injections. These cost over CA$930 a month! Thank goodness I have some cover!!
I wonder why they didn't offer me Xarelto? What does that cost, if you don't mind me asking?
I'm quite ticked off at getting the thromboembolism in the first place. I have ALL the risk factors including thrombocythemia, with platelets at 2.5 times higher than normal at the start of my treatment. Why wasn't the risk addressed prophylactically? Why was it not even discussed? I seriously could have died!!0 -
On a lighter note, I am now feeling much better than I was about 6-8 weeks ago, and I've been to three deep water workout sessions in the last week!
Also, my hair is growing too! Some of the ladies were admiring my "haircut" today, and one was highly embarrassed when she realised I was under treatment for cancer!
I never lost it all from the top, but shaved it when I went bald at the sides. Now the sides are soft and white, while the top is more spikey, and has some colour, although I'm not sure what it is yet .... Grey mostly?
0 -
Morwenna,
Very sorry to hear about the serious SEs you experienced. I am surprised too that you weren't warned and monitored more closely due to your pre-existing blood disorder.
I was diagnosed with essential thrombocythemia about 6 years ago. However I have not experienced clotting related issues so far during treatment (or prior to treatment). In fact, while on AC, the cytoxan apparently brought my platelet counts right back into the normal range - and already, on Taxol, they're creeping back up. I'm ER+, so my MO is trying to decide how to manage my increased risk of clotting on Tamoxifen.
Prior to starting chemo, I was very concerned about receiving cytoxan, an alkylating agent, because of increased risk of spontaneous transformation to leukemia for those with essential thrombocythemia. My MO and a specialist I saw for a second opinion (who also consulted with hematologist colleagues) agreed that my risk was higher than average, but they could not quantify the increased risk. However, they advised that risk was dwarfed by my risk of BC recurrence, so I didn't have much of a choice.
Interesting that you were told you couldn't take warfarin during chemo, since I'm taking it now (had issues with my port - infusions okay, but it is no longer functioning for blood draws).0 -
I also developed dvt a few days after final AC. I'm taking 2 Lovenox injections daily. My onc said, " chemo is a contributing factor." Normally people are only on the injections for 5 days, but they want me to continue them as long as I'm on chemo. I started them on Feburary 15. I get my last taxol next Friday, so I hope I can stop with the injections. My stomach is one giant bruise.
Paula0 -
So it does seem that thrombo-embolism is a significant risk with chemo, yet I couldn't find any literature to support that online, nor was it ever mentioned as a possible side effect.
Interesting! I should have thought it more important to be aware of this than effects such as losing hair and nails!!
Ho-hum.
I'm seeing my hematologist this morning, so maybe I'll get some answers.
Last time I saw him, and he diagnosed essential thrombocythemia, I had just had my breast biopsy, and was awaiting my results, so was kind of preoccupied!
At the time he said no treatment was required, just monitor, and he'd see me in a year.0 -
Morwenna, I think my Xarelto co-pay will be $40 or $45 for my 42 pills. Fortunately, we have wonderful drug coverage insurance. i was unaware of the fact until yesterday that chemo and ports could cause blood clotting problems. I had the swollen leg and ankle problem for weeks and am very grateful that the clot remained in my leg.
The injection that I received yesterday has diminshed the swelling by about half. I am so sorry that you have to endure those injections. I am grateful for the Xarelto.
I wish you well and send you a big hug.
0 -
Here's a little info I found on chemo and dvt. I just typed "Chemo & DVT" in the search bar. There's more, but this is the only one I copied.
Paula
http://www.preventdvt.org/health/cancer-dvt.aspx0 -
Paula, thanks for the link pertaining to cancer treatment and DVT. I was not told of this risk even though cancer is in my lymph nodes. i feel fortunate that nothing more serious has happened to me.
0 -
Thanks guys,
Well I saw the doctor and he still thinks I need to stay on the Lovenox injections for the six months i.e. until September, when all my active treatments will be over. I did mention Xeralto to him, but I guess in Canada it is not as "tried and tested" as the low molecular weight heparin injections in this case. I know some of our orthopedic surgeons are using it as a prophylactic in joint replacement patients.
In the end I didn't feel strongly enough about it to persist, but it would have been nice if he had readily agreed to a change.
He is going to see me again in July anyway, when I shall have finished chemo, and see what my platelets do. It sounds like I may well end up on a longer term management for my essential thrombocythemia after all this, which doesn't surprise me.
I feel ok about this really, I guess. I think my clots were just due to a culmination of risks. At any rate, I'm still kicking, so let's move on.0 -
Actually I did a search on this site just now, and there are two or three current threads on different forums with people reporting dvt/pe and the different treatments they are on.
Perversely that relieves my mind somewhat, .... It's not just me being incredibly unlucky! ... Not that I would really wish this on anybody else!xxx0 -
Does anyone get back/rib pain from the taxol? I was fine my whole treatment except I started getting rib pain/back pain after my 2nd dose dense taxol. It is sore to the touch and feels like a muscle pain. I also get the aching bone pain from my nulesta shot but that is usually in my legs. I am starting to get anxiety that the cancer spread but I read that muscle pain is a side effect. I just wanted to know if others get this type of pain. It comes and goes and is more of an annoying pain then an excruciating pain.
0 -
Morwenna, you're the first person I've "met" who also has essential thrombocythemia. When I was diagnosed, I was initially placed on medication (Anagrelide) for about 18 months. It was very effective in reducing my platelet counts, but was a bit of a pain because I had to take it 3 to 4 times a day. Then my hematologist took me off it, saying we wouldn't start it again until I experienced an event (e.g. thrombosis), my platelet counts topped 1000 (unmedicated, they've been between stable between 650 and 850 for six years), or I turned 60. However, I was disappointed when he said I'll have to go back on it (or something else) while on Tamoxifen (for which clotting is a known side effect). In your case, I imagine they'll want to prescribe something to prevent further thrombotic events.
Did your platelet counts decrease after starting AC, despite developng DVT? My hematologist seems to think that chemo (specifically cytoxan) actually helped my essential thrombocythemia (as in lowered my risk of thrombosis), but only temporarily. He also predicted I might experience worse than normal pain while receiving the Neulasta shot (because of my bone marrow already being "crowded"), but I didn't have any. However, on every round of dose dense taxol I've had significant bone pain (enough that I take Vicodin) for about 3 days or a bit longer. It's mainly in my fingers, toes, wrists, heels knees, shoulders and thighs and less so in my lower back.
These drugs can effect all of us differently, it seems.0 -
Lmcclure,
Yes, I got pain in ribs and mid back with taxol. My MO said that is a side effect. It does tend to come and go after tx. Then mine settled down just in time for next tx. Hope this helps. Take care.
Sandy0 -
I had Taxol #11 today. I was told, I need to have a full body bone scan and MRI before I can move on to rads.
I had those same tests before starting treatment. There seemed to be more activity in my left shoulder than other places that I have degenerative joint or arthritis. So I had an MRI that was supposed to last 25 minutes. After 30 minutes they pulled me out and said they needed to inject dye and do another 30 minutes. My back hurt so badly from that hard table, I told hem I just couldn't do it. I limped out of there like a 90 year old woman.
Because I couldn't complete the MRI, the radiologist wouldn't commit to it being arthritis. He said, it could be mets, but he couldn't say either way. So, now I have to go through all of that again.
I've had bursitis in that shoulder in the past, so I'm sure that's all it is.
Paula0 -
lmcclure,
I also get odd pains usually around days 3-5, shooting pains that make me gasp, and stop dead, then they're gone.
I'm like "Oof! Oww!!, oh no I'm ok!" first they were sort of left kidney region, then sometimes around my shoulder blade, and sometimes in front, below my left ribs. I'm sure its Taxol side effects.
Caitlinn, hi, fellow essential thrombocythemia person!
Last October when I first saw the hematologist, my platelets were just over 1000, and they came down only slowly on AC chemo. Now I'm on Taxol they have dropped below the upper normal limit for the first time since I set foot in Canada in 2005, since when they had steadily risen. I have no idea what they were before that, as I didn't have routine blood tests.
It was back in Spring last year after my annual checkup that my doctor remarked "your platelets are high", to which I responded, "well yes, they've been high since I got here!", and he was like "so they have! Perhaps we should get that checked out!"
Now they have dropped almost 650 points since starting chemo! Part of me thinks it's a good thing they were so high before I started or I'd be in serious trouble now!!
All my other blood counts have stayed really good! There has to be some advantage to having polycythemia to start with .... I certainly haven't needed the neulasta shots!0 -
Paula -- yea, you are almost through. Hope the tests aren't as bad for you this time around. My MO is not ordering any scans until after radiation. I was supposed to start rads on Monday, but now it will be Tuesday because they are going to have to send me to a different clinic and I had to have markings redone -- the clinic closest to me is putting in new machines and my RO wasn't comfortable with using the one machine they had left after doing my markings.
Imcclure -- I had lots of back pain during Taxol. Sometimes pretty severe. It's been 4 weeks since my last treatment and I'm not having the pain anymore.
0 -
Hi ladies,
Time really does improve SE. I had many going on during chemo, but each day improves. I had leg pain with taxol and hip and back. My feet hurt but none of that is going on. I do have the neuropathy still in my hands and feet. It used to drive me crazy. I think I am either used to it or maybe it's a tad bit better. I layed off the L Glutamine this week. I have the chews. I have caught a bug at work and am doing codiene cough meds, flonase, antibiotics. I think I am a bit better now. I was miserable Monday so I ended up at the doctors. I missed 2 days of work.
I went to PS on Thursday. I am having an in office proceedure. They are going to nip/tuck lol. I am having my dog ears removed from my reconstruction. I had direct to implant after BMX. And I supposably can work the next day. Nothing but a local needed. And at some point getting the 3 D tattoo nipples.
I am feeling so much better. The last year was a mess. But I am getting my life back. I am having fun again. Just want you to know things do get better. So hang in there Ladies. I am approaching 5 months PFC.
Rose
0 -
Skigirl,
Well, I am no longer on same schedule as you. I had to skip last Wednesday's tx. MO said that my neuropathy is lasting too long. It is okay if it comes and goes throughout the day but if it stays constant for more than a day, it needs to be addressed. Mine lasted from Sunday night until about last night. Due to see her on Wednesday again so, will see what she says. May have to switch to taxotere or something else. Hope you are doing well.
Take care,
Sandy0 -
Wishing all of you a Happy Mother's Day!
0 -
Sandy, Are they just skipping the tx or are they adding it on to the end? I heard of doctor's doing both. Are you taking B6/B12 and glutamine? Sorry to hear the neuropathy is not subsiding.
I have joint/muscle pain. Primarily in my legs
I really didn't know what was wrong last week. I just was sore all over. I thought I just over did it in the garden. Guess not. Now I need tylenol to keep it to a tolerable level. Does this get worse because this sucks.Happy Mother's Day!
0 -
Skigirl,
The nurse said they would add to the end but, that is the nurse. Will have to see what doc says. Not sure if she will switch to another or stay on this one or stop altogether. I see her on Wednesday. Most of the neuropathy was better yesterday. Sorry you are having pain now. I am sure struggling with that too. Feels like I am walking with 20 pound weights on my legs. Even with the vicodin I am still hurting. I am taking ibuprophen in between. I hope your pain eases up for you. Unfortunately, I was told that taxol is cumulative and continues to get worse as treatment goes. Others on here have said there's didn't get worse but both my doc and the nurse said, for me, they would just worsen but I have the other medical issues going on too. I am taking B6, but that is all. I will try to ask doc about others.
Take care,
Sandy0 -
Hello ladies.
I'm about to embark on the weekly Taxol adventure!!! Been scanning through the feed s bit and just wondering if anyone has any information I might find helpful prior to starting. I just came off of 4 AC's and I've heard this is much more tolerable, which is awesome because I have a nine month old
Also, I've heard your hair starts to grow back, has anyone found this to be true???0 -
I just had weekly taxol #7 and I have white fuzz on my head. It been slowly showing up for about 2 weeks now. Totally cant go outside without anything on my head yet, but, it is there. My eyebrows and lashes disappeared a few weeks ago. I haven't shaved my legs/ pits or anything else in weeks!!! That would be the bright side...
Taxol is way easier than AC. My week consists of tx on Mondays, steroid high on Tuesday (take ativan to sleep mon night). Sometime on Wednesday my taste buds disappear and i get them back some time on Saturday. Its not the ass covered ass taste like AC gave you. its just zero taste. I started getting some joint aches the last few weeks. They told me to take claritin once a day and benadryl (25mg) twice a day for three days following tx.
Other than that, it's a walk in the park compared to AC. Good luck to you.
0 -
I have taxol #7 tomorrow. The last few days I have been developing a very fine rash on the back of my hands/wrists, and now on my face. I think it must be related to Sun exposure, even though I use sp15 moisturizer. Guess I better go look for a floppy hat!
I'm in a strop this minute as my son has gone off with my car key and I was all set to go to deep water workout and try out my new swimsuit. *sulking*
0 -
Taxol is a breeze compared to AC, for sure. I have 5 more to go beginning next Wednesday. My lashes have thinned and my brows are mostly gone. I am fortunate in that I do not have any pain which requires medication. I am just tired most of the time. it is helpful for us all to share our side effects.
0 -
Hi all,
I just had the 12 weeks of taxol/herceptin (no AC or other chemos) and I thought it sucked
..... So I guess I'm a real light weight compared to the rest of you warriors..... and I guess that makes me REALLY terrified of a recurrance because I'd probably have to do the real stuff then (AC, etc.).... YIKES....But I think I'll just stick with being done done done and never having to go through this again
0 -
Jayjayc,
Congrats on being done. Wishing you the best!0 -
Jayjayc,
I don't believe there are any "real lightweights" when it comes to dealing with a cancer diagnosis and all that goes with it. Whether it is "just dcis" or whatever stage, just varying degrees of awfulness!
Congratulations on being done! xxx0 -
Jayjayc --Taxol has a lot of SEs and if I had not done AC then I'm sure I would have thought it was terrible -- and it was bad as is any chemo -- but AC was just so much worse that it makes Taxol seem so much better. My MO said he does AC first because he thinks it better to get the worst over with. He said Taxol is easier but it's still chemo.
Tomorrow will be 5 weeks post Taxol and my hair is getting thicker and longer every day. Still no eyebrows and just a few stubs on my right upper lashline. I still have mild numbness in my fingers. And when I have a hot flash now it feels like hundreds of tiny stings all over my body. Hot flashes are bad enough but the stings are miserable.
There was a scheduling mixup on my radiation so I don't start until Thursday.0 -
Jayjayc... you're not a wimp... you just have no comparrison
. Frankly the six weeks of daily radiation you have coming up scares me more.... I was lucky to be able to have mine done internally for a week. Good Luck!0
