Who is starting chemo in September 2016?
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Congrats Sam/Emily! and CC!
I will be done Jan. 20th:(...then on to surgery(very nervous about surgery)
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I visited the NP today and learned something interesting and wanted to share. I was told when I started Taxol in October to take B complex and B6 vitamins and also D3. The B vitamins are for neuropathy and the D3 is for calcium absorption as taxol can prevent that. I asked today if I need to continue taking all of those supplements once chemo is finished in January. I can stop the B vitamins but was told to take the D3 forever because not only does it help with the calcium absorption, it also helps to prevent recurrence of the cancer. Apparently there are proven studies about this. I'm all for anything to prevent this from coming back! Has anyone else heard this?
Taxol #8 tomorrow. 4 more after that. Finished on Jan 20. This can't be over soon enough! Every time I am at the infusion center I walk past that bell that patients ring when they are finished. I can't wait till it's my turn.
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I had what I think is my last chemo treatment today. It's a little unclear because I switched from Taxol to Abraxane after a severe reaction early in my second Taxol treatment. So, I've had one Taxol and 3 Abraxane treatments. Since I was originally scheduled for 4 Taxol treatments, I'm hoping I'm DONE.
I haven't yet had a visit with my oncologist since the treatment change and the nurse practitioner noted that the system showed me having another chemo on Jan 13. Ugh. I hope that's an oversight and not an actual recommendation. I see my onc on Dec 31 so I'll know for sure then.
I usually feel pretty good on chemo day through the next day but already feeling a bit off, a little dizzy, tired, and headache. On the plus side, all my blood lab results were a little better today. The Abraxane treatments were every 3 weeks so my blood had longer to recover than between the dose dense AC and Taxol.
For anyone still taking taxane treatment and getting neuropathy symptoms, I found a couple very small studies out of Japan showing that mild compression during the chemo treatment and a short period afterwards was helpful in reducing neuropathy symptoms. The study used double surgical gloves in one-size too small for the patient to apply mild compression (they didn't do the feet). I used IMAK compression gloves and socks (sold for arthritis sufferers) during my last few treatments, in combination with ice bags on my feet and a frozen water bottle held in my hands. I had no "control" so I can't be certain that it was helpful but I believe it was. I started having neuropathy symptoms in my toes after the very first Taxol treatment. After the next successful treatment, which was Abraxane, the neuropathy expanded to my toes and balls of my feet, with one scary day of feeling very odd up into my calves. I started using the compression gloves, socks, and ice on my next Abraxane treatment and the neuropathy symptoms did not get worse and seemed to get better faster before the next treatment. Fingers crossed that I get similar results this cycle.
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Leydi--Thanks so much for sharing about the compression gloves/socks for neuropathy. I just finished my 8th of 12 Taxol treatments today after doing AC. 4 to go! The last 2 days I've had some intermittent "weird feelings" in my toes. Kind of painful, kind of tingling, sort of feels like someone pinching the end of my toes or poking a dull needle in there. It's kept me awake for 2 nights and is gone now. NP said it wasn't neuropathy. Infusion nurse said it was. I am also icing my hands and feet for the whole duration of Taxol. I'm going to get the socks and I can get the gloves from the nurses. Thanks!!!
PS--where did you get the compression socks if you don't mind me asking?
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seq24 - Definitely sounds like neuropathy symptoms to me. I got both the socks and gloves on Amazon. I got the name slightly wrong above. It's IMAK compression arthritis socks and gloves.
Also, about the vitamin supplements, don't stop the B vitamins too soon if you still have neuropathy symptoms. I plan to continue on a lower dose of the B-6 for several weeks. I'm currently taking 100 mg twice a day, per my NP recommendation. Once I'm a few weeks past my last chemo, I'll cut back to taking it once a day until the bottle is empty which will be several weeks later. I have read some posts where women had the neuropathy symptoms start to come back when they stopped vit B supplements so pay attention to any symptoms.
I've taken vitamin D for years because a blood test at a regular physical showed I was low. I think there has been shown to be some sort of correlation between cancer and low vitamin D levels. However, that doesn't mean that supplementing vitamin D will help keep cancer away. I don't think any studies have been able to show that!
Anyone received recommendations for or against calcium supplements? I had been taking calcium with my vit D until very recently when my sister (a nurse practioner herself) told me that the latest research shows that calcium supplements do not help and may even be harmful.
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Leydi--thanks for posting the name of the compression socks and gloves. I was looking on Amazon for the first name you posted and couldn't find anything. I was thinking about something though. If the compression socks are supposed to increase circulation (the reason diabetics wear them) and icing your hands and feet during Taxol is supposed to constrict the blood vessels and prevent a normal blood flow, wouldn't they counteract each other. Does the study you read mention this. I will try anything to prevent neuropathy and it obviously worked for you but I'd be interested in hearing if the study mentions this.
As far as the supplements I take B complex and B6 daily. The B6 between the two total 150 mg a day. MO told me only 100 mg a day but I still take 150. I also take D3--1000 IU daily and was told yesterday by the NP that I should take it for the rest of my life because studies show a lower rate of recurrence in patients who take D3. I plan on doing some reading on this when I have a chance. I do know that the D3 also helps with calcium absorption which is something that the Taxol affects.
Taxol #8 was quick and easy today. I feel great today and will tomorrow (steroids) but I know the leg, hip and now knee pain I have been having will hit by Monday. It lasted all week last week. NP told me to expect that and the fatigue to get worse before this is over. Not looking forward to that.
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I will try to re-find those studies and post links.
Edited to add:
Wow! It took a lot more time and work to re-find the study than I expected:
Evaluation of the effect of compression therapy using surgical gloves on nanoparticle albumin-bound paclitaxel-induced peripheral neuropathy: a phase II multicenter study by the Kamigata Breast Cancer Study Group
https://www.ncbi.nlm.nih.gov/pubmed/27620884
There's another one that used compression stockings and gloves in combination with drugs to reduce neuropathy during chemotherapy:
Management of Peripheral Neuropathy Induced by Nab-Paclitaxel Treatment for Breast Cancer
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Hi ladies....I want to wish everyone a Merry Christmas and/or Happy Hanukkah. My plan is to put my BC on the back burner this weekend and enjoy the moment. I want to feel the excitement of my kids as they anticipate Santa's visit.... I want to wake up at the crack of dawn to little feet running down the stairs to see the tree with gifts...and I want to absorb every moment.
My wish to all of you is that I hope everyone has a beautiful weekend FREE of se's and conversations about BC!!!
Cheers to a happy and healthy 2017!!!
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I second that Denny!
Merry Christmas 🎄 ladies!!!!!
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I hear you on that Denny!
Merry Christmas to all. Enjoy your family and friends.Praying God gives us mercy regarding our SE.
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dear all. Though I'm done with chemo, and hair on my head is growing, my brows and lashes are disappearing fast and that is an upsetting fact to deal with every morning. I also started OS which supposed to sustain me in the chemo-induced premenopausal state (which makes me crampy, cranky and generally bitchy). The neuropathy is still there, and has travelled to my left big toe which sometimes keeps me up from the dull pain... But, I'm going to put that and my deformed body aside and try to feel the spirit of the season.
I wish you all Merry Christmas and may the worst of our journey be behind us. I still cry in the car because I feel sorry for myself and just want to wallow and ask "why"... just like Angela, I've been through so much... 3 near death experiences in my 40 years... not to mention other things.
I give thanks to the lump that helped me discover he multi-focal cancer. I give thanks to my mom and sister and friends who have been super supportive, and my kids who have come to accept their hormonal bald mom... I give thanks for you being awesome shipmates through troubled waters of this sh*tstorm... Much love ...
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hi all
It's been a long time since I've posted. Congratulations to all who have finished their chemo. My last infusion is tomorrow-even though I'm thrilled to be at the last one, I'm terrified of the se possibilities. Last cycle was pretty awful. I'm heading for surgery (not sure of specific plans yet) next followed by radiation. Please know that you're posts are important to people who are not always sharing their thoughts. Good luck to all! Happy Holidays
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I had my final TCHP treatment on the 15th, was very happy to reach that milestone although trying to keep in mind it will likely run into January before I start feeling better, and there is a long run still to go on Herceptin thru next summer. Not mentioning surgery and tbd radiation.
Felt ok enough the first couple of days after treatment to make a holiday party for a few hours, but the past week have been at home with various g-i upset SEs taking turns, and generally feeling very tired/weak after even a tiny amount of moving around. Only really different thing I had in SEs was some strong cramping with constipation that lasted 2-3 days, not very pleasant, followed by strong D that was also not too fun. Fortunately those SEs seem to have settled out at this point.
I'm still feeling the neuropathy, bothering me more on my feet than my hands this round. Often have this weird feeling like the toes/ball of the feet are all stuck together and cold and it feels heavy to walk any distance. The other ongoing thing is the 24/7 heartburn or whatever that is, it subsides if I take Pepcid or similar but I have to take them more often than the label recommends plus toss down bonus Tums to avoid the pains returning and waking me up. I will be happy to see that issue go away, I never had it in the past pre-chemo.
Best wishes to all on your treatment programs and for the holidays
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Good Morning All! I hope everyone is enjoying the holidays, especially if you have this week before New Year's off (I don't, up early for work). Misslil, I also get awful heartburn after my TCHP, last one was the 16th, one day after you! My husband is an MD (anesthesia to be precise) and he does NOT want me to take more than 2 Pepcids a day. I use Gaviscon in between the 2 doses. It really coats the esophagus and offers almost instant relief.
I'm 10 days pre-op today, and he has me in his surgical preparatory program. Today I start Impact Advanced Recovery Immunonutrition Drink (I get it on Amazon) 3 6oz boxes a day. Exercise is very important (I walk the treadmill 30minutes in the morning before work and then try to take a long walk in the evening after dinner). He highly stresses good oral hygiene, flossing twice a day. There is also a special drink that is taken the evening before the surgery as well as the morning of called ClearFast available on Amazon too. But please clear it with your medical teams before starting any of this!!
Sr2295, look up the January surgery group started by BeachBabyK (thanks again for organizing over there!). There are quite a few of us preparing for our MX's, reconstructions and lumpectomies. You are never alone on these forums!
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Just checking in.... Nice to hear of so many of us moving along.
I just had #4 Taxol yesterday, after a week off. The week off didn't really feel much different, still having some of the SEs, which are not bad, but somehow I expected to be better. I finally figured out that if I keep moving along at this pace, with 8 Taxols remaining plus 6 weeks of radiation, plus a total of 4 recovery weeks, I will be done on May 5th. My daughter's college graduation is May 6th. A little bit to close for comfort, so I asked to skip the next "off" week from Taxol, so we will see how that goes...
Eyelashes and most of eyebrows fell out 2 weeks ago, but darn it! not all of my leg hairs! My hair loss is really not bothering me very much, as long as it stays temporary. If doesn't grow back well, then it will be a different story. But I won't worry about that now (so I tell myself).
Back to work tomorrow after having company for Christmas.
Happy new year!
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NotTheBoss--do you mind if I ask why you get a break weak in your Taxol treatments? I've heard of others as well that get a break, but I have never been offered that. I've had 8 weeks straight of Taxol with #9 on Friday. Feels like it's never going to end. I finish on Jan 20, get a 2.5 week break, then start 6 weeks of radiation. Is the 4 week recovery you mentioned after radiation?
I've lost about half of my eyebrows but lashes are still there for now. Leg hair never stopped growing, even through AC. Hair on my head is starting to grow back. It's about 1/4" long in some places but it is colorless. My normal hair color is med/dark brown and it looks more blonde/white. I hope it does not stay that way. Although I love blonde hair, it's not me. I'd love to hear everyone's hair regrowing stories.
Wishing everyone a happy 2017!
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- Seq, hair regrowing stories. My last chemo treatment was November 18. I'm starting to notice my hair on my head growing back BIG TIME just this week. Eyebrows and eye lashes have thinned more and more each day. Body hair is almost nonexistent, which is nice to me because I have always had an abundance of hair. I'm excited about the hair on my head coming back although the wig has spoiled me. Sorry if this question is inappropriate, but does anyone know when pubic hair is expected to come back? Not in any hurry for that to happen.
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Has anyone had their port taken out yet? I'm scheduled for next week. There were so many stories of it going in I was wondering. I'm marking that day as the official end of chemo!
Finally met with my RO this week and got my plan. He won't start until 4 weeks after my last chemo and that can be subject to change if he doesn't think I've healed enough. I'm so ready to be done and am not allowed to even start! And then to find out that the studies saying there isn't much difference between 20 or 30 sessions in the grand outcome was only studied for women 20 years older than me so we'll give you 30 just to be sure. Grrr. Seriously? Medicine needs to run studies for everyone not just one group! This is now the second time I'm getting everything just because they don't know! There is obviously enough of us out there to do a study for ladies in their 30-40s so it's not just through everything at them and hope something works. Although he did say I've got the older women cancer, not the young one which is typically more aggressive. Yes, thanks, I'm grateful, but I can't be the only one. Grrr.
Sorry but so over this. And am looking forward to nose hairs coming back. Got some kind of sinus gunk going on and am constantly dripping. Just one more thing to annoy me on this journey right now!
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CC, I just finished radiation and was on a thread here on BCO about that. I'm surprised how many women receive traditional courses of radiation and don't blink an eye but will debate endlessly about creams and dressings to prevent/treat side effects. I never spoke up because I didn't want anybody to feel bad about their treatment plan but I really wanted to scream at them they should be discussing hypofractioned radiation instead of experimental wound dressing with their doctors.
You'd think younger women would better tolerate higher doses of radiation than us older ones but what do I know.
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Yesterday marks seven weeks since my last chemo treatment. In the past two weeks, the hair on my head has really been coming in. It is still too short to tell for sure but it looks and feels to be the same color and texture as my before hair. I'm still losing my eyebrows, though. Good thing big drawn on eyebrows are in style. Body hair is still gone but I've already had to pluck a couple chin hairs. Makes no sense.
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Bagsharon, you cracked me up. Several of my 48 and 49 year old classmates were sitting around sharing menopause stories yesterday. I got to "brag" that I no longer have to pluck chin hairs since chemo. Needless to say, they were jealous. Lol. We have to see that silver lining.
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CC2016--I have 4 more rounds of Taxol (3 after tomorrow) and finished with chemo on Jan 20. I am scheduled to have my port removed at the beginning of Feb. My surgeon told me at my surgical follow up in August, that removing the port was "nothing" and is done right there in the office. While I was going into the exam room there was a woman coming out of another one who the surgeon later told me had just had her port removed. She had a large bandage on her chest but she had a smile on her face and he told me that she had said "it wasn't too bad". Hoping that is accurate information. Can't wait to mark the end of this chemo! 5 months of this is a long haul!!
I met with the RO about 3 weeks ago. He asked me if I'd be interested in being part of a study to determine recurrence of cancer in 4 weeks of radiation vs. the standard 6 weeks. He was telling me all about it then he told me he would never recommend a 4 week treatment for anyone in his family because there is no proof that 4 weeks is as effective as 6. That was enough to convince me. NO WAY am I taking any chances of recurrence by being part of that trial. The thought of having to go through this again is enough to give me nightmares!
My hair seems to grow every day which I'm thrilled about, especially since I'm not even done with chemo yet. Getting nervous because from what I can see I have the skunk look going on. White on the top, dark on the sides. That's a scary thought! I'm sure hoping that the top changes to dark as that is my natural color. Someone said the chemo takes the pigment out of new hair and the color won't come back until chemo is done. Again, I hope that's accurate information.
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Sharon, good to hear from you. I am just like you with the hair coming in, but eyebrows and lashes thinning considerably. I spend 5-10 min drawing and filling them. The hair in other places (TMI warning) is coming in like peach fuzz. Haven't shaved my legs for 2 months. I don't have chin hair, but was bummed that my upper lip fuzz didn't suffer from chemo SEs
My hair is completely grey on the sides and salt and pepper on the top. I was hoping that I could be lucky enough to get a different color or no greys like some women, alas - I am grayer than I was. I don't have rads coming up - just an exchange surgery in February - so I will stick to this thread and continue following the hair and exchange threads. Have splendid New Year ladies - may we see our bodies and health get stronger and cancer fade as a distant memory and may you all see your years multiply ! 0 -
seq, my doctor had the opposite opinion than yours about short course radiation, aka hypfractionated radiation. There is plenty of evidence it is just as effective, has less side effects, is less disruptive and would be what he would choose for his family.
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Seq24, I think radiation oncologists might be influenced by concern that they'll be liable if they undertreat plus an extended treatment plan increases their revenue. There are some studies mentioned here that are interesting.
http://www.breastcancer.org/research-news/benefits...
Lyn
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"At 10 years, the cumulative incidence of local recurrence was 6.7% in the control group as compared with 6.2% in the hypofractionated-radiation group" This quote comes from the first scholarly article of many that pop up when you search hypofractionated radiation: http://www.nejm.org/doi/full/10.1056/NEJMoa0906260....
There is nothing wrong with going with the better known course or a doctor saying that is what he prefers but to indicate that the short course is experimental and has no proof of being effective is basically a lie. I would be suspicious of his motives but having said that, a lot of insurance companies are also pushing for the shorter courses to reduce cost. Who's to say that my doctor isn't influenced by that?
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Seq and Sharon - and my RO said the study was already done! But on 60yo ladies so he didn't want to take the chance that the results would be the same on me since I just turned 42. I can't remember how old you are Seq but according to the story I was given the difference in recurrence on 60 year old women who had either 20 or 30 radiation treatments was negligible. But having rads or not after a lumpectomy made a huge difference with a recurrence...can't remember the percentage but it was enough to make it a wise decision to do so. But then maybe the dx. tumors, sizes might be the whole reason for different stories too. When they say personlized care, I guess it really is. I've got to think that at least, can't keep up with all the differences and reasons otherwise.
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CC, I have a dear friend who underwent radiation therapy in her early 30s and now, 20 years later, she is experiencing all kinds of secondary cancers. I asked my RO about that and he did say that younger women do not tolerate radiation as well. I thought he might be trying to pacify me but maybe he was being truthful. Regardless, I have 20 years to worry about it.
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CC2016 and Sharon--thanks for sharing that info. I'll read about that study. Thanks for the link. I found out today at chemo that the study the RO mentioned was specific to the health network he is a part of and is not related to any other studies. But 10 more treatments would definitely give him more income too! I happened to remember one set of statistics he told me when I met with him awhile back. He said that with a cancer diagnoses with no treatment the chances of recurrence are 100% (obviously), With surgery it decreases it to 50%, and with chemo 25% and with radiation they want to get the percentage down to the single digits. I'm not sure what formula is used to determine that final percentage. I'm sure hoping we can all be in the single digits by the time we're done. My MO told me in the beginning, when I was considering not doing chemo, that the chances of recurrence with surgery and radiation only is 50% so that kind of goes along with that I guess. That one single conversation is what convinced me on the chemo.
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seq24 - The break week is supposed to help my body handle the symptoms better, especially the neuropathy. I wasn't having any particular problems, this is just the way the MO likes to do the Taxol, I believe. The nurse did comment that after my break week, all of my blood work was good. Not "kinda low, but ok", but actually within the range they are all supposed to be. I felt some better, but not as good as I expected to feel. My 4 weeks off that I was counting were 2 break weeks, and then 2 weeks in between chemo and radiation. That leaves no extra time at all, and takes me to May 5th, one day before graduation. Hopefully skipping the break week won't mess me up healthwise.
My tumor markers were going up, so the MO ordered a PET scan, which the insurance denied. I found out after fasting for 6 hours and arriving at the scheduled time. (grrr.) Then the doctor's office got notice that I had the test anyway, even though the insurance denied it, which I DID NOT. Hopefully just a glitch in the system, but now that's another bill to watch out for. Now I will be getting a CT scan next week, instead.
I am happy I have insurance. I AM happy I have insurance. I am HAPPY I have insurance.
Just bought a felt tip eyeliner to go along with my false eyelashes. I wear them about once a week, but they need some help. And I might break out my removable eyebrow tatoos. Haven't tried them yet, but have hardly any eyebrows left, so it might be time.
I must say, that as much as I look forward to having hair again, I'm going to miss the quick showers. And the quickness of getting ready. I guess it's a taste of what it feels like to be a guy.
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