Starting Chemo in December 2016
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Irishmom3---Sorry to hear about your reaction to your chemo treatment
hopefully the board will have a suggestion that you will feel good about!--maybe there are others, here, who also had to switch chemo treatments that may help with info for you. Wishing you the best!Pamaher, Pamela23, mistyeyes---I have the same leg, arm and add torso muscle issue. The more I walk on the treadmill the worse it seems to be. I mentioned it to my MO yesterday at my 4 week post chemo treatment. All she said was, "Well it took 12 weeks to put your body in this state, so it will take time for your body to come out of it." I have to say that she has told me that I have had MORE side effects than any of her other patients on TC. ---I don't believe that. Also, I made sure to tell her all of them hoping that if she is telling the truth that she will believe others after me.
Yesterday, I had my port removed. It was supposed to be a short procedure. There were 2 doctors (the one who placed my port and a younger new doctor). Yes, I got the younger new doctor. I was given 2 injections to numb the area---those are a bit uncomfortable. Unlike when my port was placed there was only the doctor working all other staff was busy in the room but not near me. While cutting to remove the port, the doctor began yelling for gauze squares and was applying a lot of pressure. Then, he yelled for a cauterizer and spent a long time burning in there. Yuck. The digging seemed endless even though I had only had the port since December 2016. While the tech wheeled me back to recovery, he said the doctor hit my artery, which I already figured out.-----I decided not to share that with my MO figuring she wouldn't believe my short removal was an hour and a half! ---By the way the port was not a choice instead it is the only way they give chemo.
Now, have my bottle of Tamoxifen to be started 2 weeks after Effexor (to treat severe hot flashes--hope it works). -----Wishing all of us wellness always!!
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summer - good luck to you and congrats on completing this part of your treatment
Has anyone hear been told they had LVI? I have my pathology report indicating there was extensive LVI ugh. Makes me scared now that my prognosis is worse.
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OMG Summer!!! I gasped reading that!!!I am so sorry you have been put through the ringer! I was lucky I didn't need a port because I only had 4 infuses and my MO didn't think the risks outweighed the benefits. Hoping for a speedy recovery!
Staymom--how's it going? Just keep thinking, there's only 1 more to go!!
Hopfull--how are you doing?
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scaredashell07 - I also have LVI (lymphovascular invastion). It was described to me as I had microscopic cancer cells in the channels that lead to my lymph nodes. So, the cancer was not in my nodes, but probably would have been if I had been diagnosed later. So, the presence of LVI is why I needed whole breast radiation and I could not have bracytherapy type radiation. Having LVI was also a reason I opted to have chemo (I was in a gray area of needing it based upon my Onco-type DX score).
Irishmom3 - what drip rate is your MO using for your Taxotere infusion? Have they tried slowing down your drip rate? Because of the reactions I had with Taxotere (extreme shortness of breath), I received my infusions over a two hour period versus one hour. This really helped me and I was able to tolerate receiving it
I am still having extremely watery eyes and the tears just drip down my face constantly throughout the day. I'm really looking forward to this going away.
I have finished chemo (Feb 16) and just had my marking session and simulation for rads this week. I expect I'll probably start radiation sometime the week of March 20.
Just a tip for everyone who has the muscle aches, etc. I recommend massage therapy. I had a massage treatment every three weeks when I started chemo. I would have it the Monday before my Thursday chemo treatment. It was helpful for some of the muscle ache issues. I'm going to go two weeks in a row this time, because I won't be able to have massage therapy for awhile once I start rads.
.Hang in there everyone....one step closer!
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I also had muscle aches and tried Epsom salt bath .. Made a big difference for m
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Thank you, scaredashell07
Pamela23---It did rattle me! I was a mess for the rest of the day. Just felt others should have the chance to know what can happen. I don't believe it would have happened with the first doctor I had. I realize everyone needs to learn, however wish they had an experienced doctor standing by!!!
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hi everyone. Hope everyone is doing well. Im 2 weeks pfc. feeling back to normal other than the horrible muscle ach I have. I met with my breast surgeon to follow up. Everything's looking good. I see my plastic surgeon in about a week to discuss reconstruction. I can't wait to start that. With summer coming that would b nice. But I'm also having a prophylactic mastectomy on my good breast. So I still have a long journey ahead of me. Hugs
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hopeful. Congrats!!
I'm not looking forward to summer as I am flat on my mastectomy breast. I will get a foam insert for tbks summer and think about recon next. I am getting my ovaries out and considering a prophylactic mastectomy for the "good" breast. What made you decide to do it?
Anyone hear that Fernera has a better statistic for recurrence than tamoxifen. It was my docs reason for agreeing to my ovaries removal request!
Also I'm one more to go. I feel pretty good. My hue lasts shot tonigjt will do me in but that's usually short lived.
Hugs to all!
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Summer2016 - So sorry to hear about your port removal! I can't believe everyone isn't in some state of "out" for this stuff. I don't know what they gave me when mine was put in, but it wasn't enough initially - apparently I kept moving! I'm definitely planning to not be aware when it's taken out. I'll be on Herceptin for a year so not until December!
Let us know what happens with the Effexor. I've been having terrible hot flashes, too. They don't want to put me on anything else at this point (which is okay with me). I'll wait and see what happens after the chemo is done. Two more rounds to go ...
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Good morning friends! Happy Friday and woo hoo for those finished and those of us coming up on our last treatment! I'm mentally feeling stronger just knowing the last one is around the corner.
Scaredashell I also had LVI. I thought that was a given if it made it to your lymph nodes and 2 of mine were positive. I'm also thinking of having my "good breast" removed. My surgeon does not believe it is necessary and I have some time to decide but would love to hear others reasonings on the decision. I just feel mentally it will be difficult to go for mammograms etc and the constant fear and possible regret.
Before radiation we have decided to do an axillary node removal. When I had my mastectomy they only removed my 3 sentinel nodes and 2 had cancer so we feel it is best to go in and get the rest. So more surgery and drain at the end of April and then radiation after that! I was really hoping to be done by the summer!
Summer I hope you have recovered from your port removal. So sorry you had to go through that!
Congrats Hopefull
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hi scared shell, I decided to have my good breast removed from the day I got diagnosed. Just that my BS felt it would be better and more asymmetrical to the other breast if we wait to have it removed at the time of reconstruction. I feel it lowers my chances of getting this nasty disease on the other breast. Now studies show it doesn't make a difference but it helps me sleep better at night. And my mom passed away exactly one year ago from this nasty disease that later turned into mets so I always new that if I was ever diagnosed I want Both removed. I'm also glad my BS was on board with this decision from the beginning.
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I read something about the cancer recurring in the good breast instead of traveling somewhere else in the body and that would be a reason to keep it. It's only something I heard once and I don't know how much weight it carries. I have this bad habit of over analyzing all sides to everything and always feel conflicted and thinking about the other side. Was also wondering if you get a mastectomy on other side do you still get an MRI to check for recurrence on chest wall or collar areas ?
Hopeful - so sorry for the loss of your mom and now you having to go through this. Life just seems so unfair lately
Stay mom- I will be thinking of you on your surgery. And I too thought LVI was obvious when you have a node positive but have to discuss with the RO to understand better. My surgeon didn't think i needed rads but my MO does. My pathreport says extensive LVI. Ugh
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NotVeryBrave---First night of Effexor was 3/9. I took it around 8pm. I had a slight headache, felt a little sick to my stomach and then acid reflux (which I fixed with a pecid). Headache went away around 10pm so did my upset stomach. I had relief of hot flashes the entire night (did not expect it to work that quickly). What I felt was a little warmth, yet it never developed into the HOT SWEATY I need to through off blankets and fan myself for 5 minutes. I did still get chills however much much milder. It even seemed to carry over the next day therefore I did not take an Effexor tablet the next morning. I did have mild dizziness and blurred vision that my glasses helped with. That all disappeared around 2pm.
3/10 decided to eat yogurt with Effexor at 8pm (I usually do not eat after 7pm but didn't want to feel sick). It worked---no upset stomach no headache and no acid reflux and best yet after 2 hours from taking the pill NO HOT FLASHES! Yay! Again today 3/11 I didn't take one this morning since the effect appears to be carrying over! Today no blurred vision just a little lightheaded feeling. What a relief! Can't begin to tell you how great it is to get some sleep. First 2 nights of sleep in months.
I start Tamoxifen in a couple of weeks therefore this may all change. MO says Tamoxifen will cause hot flashes therefore I don't know if Effexor will be as effective as it has so far. I sure hope so. I may need to add the morning Effexor when on Tamoxifen.
BTW my Effexor dose is 37.5mg
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Thank you StayMom---Yes, I have recovered from my port removal...just a little sore.
Scaredashell07---I chose to remove my other breast for several reasons; I was 49 when diagnosed and had been called back on numerous mammograms-----Did not want anymore mammograms and the fear and stress they were causing me. I felt that it would be easier for me at my age to have the other one removed while I was young.---My neighbor had breast cancer 20 years prior and now at age 80 had to remove her other breast.----I didn't want to go through that surgery later. Also, I kinda just felt I would rather be symmetrical from the start. I also knew that I did not want reconstruction. I will be wearing mastectomy bras with the foam inserts not heavy prosthetics. Do I believe that will make me cancer free? Not necessarily. I believe more in the biomarkers. I believe that science has identified several of these markers yet we still do not understand all there is we need to know about them at this time.
It was interesting to listen to the reactions of my extended family on my decision to have a bilateral mastectomy. It was pretty much split down the middle among 14 women in my family regarding what they personally would chose to do. Thankfully all supported the decision I made for me.
If I had been questioning or struggling with the choice, I would not have removed the other. It was something that I had thought I would do if I was ever diagnosed.----hope this is a help. I believe everyone's choice is the right one for them.
As for the testing part, I will know more April 19 my next MO appointment is supposed to be what she called my survival plan. Once before she mentioned blood test as follow up. She told me that they only order scans if there where symptoms (that worries me as I think symptom testing may be too late) or if blood test show elevated cancer markers. Guess I will learn more on the 19th.
I remember my surgeon for BMX telling me this is TREATABLE and my MO saying it is CURABLE. Each has a Very different meaning. I wonder which one IT IS...........
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Hopfull2----I'm so sorry to hear of the loss of your mother! You are incredibly strong to face this disease and the loss of your Mom in a short period of time. You are amazing by keeping it all together----May you and all of us be blessed with healing and wellness always.
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Summer - Thanks for the info on Effexor. I'm trying to hold out until chemo is done (2 more) since I hate taking all these meds. My MO mentioned that one and one other.
I haven't had any surgery yet. It's funny. At first - I thought mastectomy (especially with HER2) and not have to worry anymore. But of course - that isn't really true. Now I'm really hoping to have a lumpectomy.
I have the same symmetry concerns. And I worry about repeat surgeries with mastectomy and loss of sensation. I think the best thing I ever read was someone saying you can always change your mind later and get the mastectomy, but you can't get your breast back. I'll have another breast MRI after chemo and make the decision. I think none of my providers really believe the one auxiliary node that was biopsied was truly negative
My MO refuses to use the term "cured" - he will only use "remission" because he says there is no way to ever know that they got every cell. Kind of depressing. I figure I'll try to do my best to follow whatever is scientifically proven ...
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Hi Friends. I'm feeling better each day, I'm 12 days out from round 5 and my 6th round is 2 weeks from today. Next week, I'll be going to Vegas for work, so I'm excited about that.
The taste issues are getting worse and lasting longer with each treatment. Everything tastes gross right now. The last week was terrible and I had to force myself to eat or drink anything. Anything sweet is not palatable. I could do milk, cottage cheese, and buttered toast most of the time. Peanut butter was OK most days. No fruits, veggies, even water tastes gross. Have to just force myself to eat and drink something throughout the day even though it tastes terrible.
One of my nails is lifting off, just noticed it last night. I need to get some Epsom salt and soak my hand twice a day so I don't get an infection or fungus under the nail and I really hope it doesn't fall off!
Regarding the BMX vs MX vs lump+rads, I know that the studies say it's all similar outcomes, but I feel better having all breast tissue gone - especially with ladies I know who have had to go back for several re-excisions with lumpectomies and then still end up with MX or BMX in the end. However, with my genetic mutation, there was never any question that I would remove both - the BS never discussed other options. Plus, my left breast, which had the cancer was already notably larger than my right breast (L was 'B' cup, R was 'A' cup) and I always hated how lopsided they were and I didn't want to end up with two 'A' cups if they matched the left to the right, so was happy to get two new, matching boobs out of the deal.
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is anyone getting bad nueropathy? My fingers are numb on my right hand and I'm reading that sometimes it's doesn't go away after treatment finishes. Ugh. I'm on taxol. Have one more to go. And the pain in my hips and legs are shooting pains that I haven't had before. I'm so bummed. I almost made t through and now these SEs0 -
NotVeryBrave----my MO would not start me on Effexor until my chemo was completed. She didn't want to add anymore meds at that time. I believe you are on the right track by waiting until after your chemo! Hopefully it will give you relief as well.
I wish you the best on your surgery choice. You must do what you are comfortable with
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Jezikah---Good to hear you are feeling better! And Yay for a Vegas trip and last treatment around the corner:)
I still have many foods that taste bad to me and I am 4 weeks PFC. Strange, typically I am not a sweets person however on chemo that was what tasted normal to me. I know water had the worst taste and did I ever have to force it down as my nurse insisted on 6 glasses a day.
My nails turned yellow and became thick. Many look like they may lift off. I have been worried about that.
Do relax and have fun on your work trip to Vegas....what a wonderful break from this all!
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Scared - I'm having neuropathy too. It started after round 1 of Taxol as a sharp pain in all of the creases in my hands and feet. I cured that with Udder Cream with 10% Urea in it. After the second round of Taxol (and a full jar of cream), I'm just feeling some numbness in my feet. The intensity of the numbness comes and goes. I'm hoping that its not permanent. But if it is, at least it's not the pain kind of neuropathy and at least its not in my hands. I do a lot of writing for a living. If I can't type, I'm screwed!
All of my fingernails are blackened. My MO just shook his head when I told him that I think they can be saved because none of them are lifting off yet. He believes that they will all be gone before this is over. Ugh. Just add it to the list. I can't complain though. All of my SEs are super annoying, but not (yet) debilitating.
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scaredashell07---Yes, I have the neuropathy. It started in my hands after 2nd treatment. I figured I would have a problem when I had the severe burns on my fingertips. Then, after 3rd treatment it began in my feet. 4 weeks PFC my hands are better (it is off and on), however my feet are worse. MO says there are meds to try for neuropathy. I told her I wanted to wait to see if it will improve over time as my hands are better am hopeful my feet will follow.
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As far as neuropathy goes - my fingertips are a little numb, like less sensation, all the time and my feet feel like they are burning soon after chemo but get better over time. My MO said with that level of neuropathy he thinks there's a good chance it will completely resolve by 3 months afterwards.
I'm so sorry to hear about the nail problems. I have a deep ridge across the nails that corresponds with my cuticles disappearing after the first round and they have a darker pink/purple color starting about halfway down. Thankfully no black nails or lifting or loss.
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jezikah, sorry to hear about your bails lifting. That's horrible. Mine are just dark . But hopefully next weeks trio brings some relief from reality. It's super hot out there so take your summer gear.
I hope everyone is doing well. I know those of us are getting ready for surgery soon and have big decisions to make. I know we have to trust our instincts. It looks like my surgery will be early May. I'm taking advantage of this break I have with no more chemo before heading on to surgery.
Hug
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good luck to all the ladies facing surgery next.
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Yay! TCHP 5/6 done. Now waiting for SE to kick in. Usually day 3-5 are the worst. No nausea, just feeling down. After #4 I caught a bad cold and had do take antibiotics to fight it off.
I have iced my nails and my tongue during my treatments and have no issues with neuropathy, blackened nails, mount sores or loss of taste so far!
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Last round yesterday! It does feel great. I think I am going to escape all of the bad stuff like neuropathy and nail issues with Taxol. Muscle soreness and shooting pains have been the worst of it. We will see what the next few days bring. Day 3 and 4 Friday and Sat. have been the worst.
Five weeks of radiation to begin March 28th. I will be moving on to the rads thread but will be checking back to see everyone's progress and encourage those who may need it.
Good luck to those moving on to rads or surgery!
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Congrats SCGirl50!! I'm surprised your starting rads so soon. I think I had 4 weeks in between. I'm 3 weeks into rads. So far, that side looks tanner but my breast is swollen and a little tender to the touch. .Not the skin itself, but whatever is going on inside. See you on the rads thread!
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congrats scgirl- happy for you. Good luck and hope to hear from you in the future.
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YAY, SCGirl50!!!! No better feeling than moving on
Best of luck with your Rads!0
