Starting chemo July 2014
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Dancingdiva, when I had my nails done yesterday we noticed that the cuticles of both thumbs are going purple. I had the gels because I had heard it might save them. We shall see. Toenails are fine though, could that be because my feet are always cold?
RainDew, looks can be deceiving. That is my "I just want to go home and curl up in my recliner" look... Which is actually the only look I have now. As we were driving to the restaurant, I couldn't make my eyes stop watering. Maybe it was the bright sunshine, but I kept mopping at them the whole way. Still not as annoying as the drippy nose in my opinion. All through dinner. Went through three tissues. Sheesh. Is your hole big enough for two?
Thank you, ladies, for your kind words. I look in the mirror and I don't see me anymore.
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dancingdiva - My feet are not burning anymore but the discoloration has turned purplish. I was thinking the doc would cancel my TCH infusion this upcoming Tuesday but since the feet are getting well I guess I will be getting this last one on schedule. Of course I still have the herceptin for a year, not to mention 4-6 weeks of rads......
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Mags - I love that style on you -it looks so natural. Don't worry, none of us look like ourselves anymore. I look in the mirror and see my little brother after he was older and had lost his hair. I never realized how much we look alike. With make up, I still dont look like me, I look like my little brother in drag!
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Happy Birthday, Jennliza. I'm glad it was a good day.Very cute photo, Mags.
My MO told me to use baby wipes for personal care areas.
It does seem like there is a count up to day ten (or so) when I feel better and then a count down from day ten to infusion day. I'll be you can't guess which one goes by quicker!
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Hi, all. Coyote it is, indeed, a holiday Monday for me. Normally I would be getting ready for back-to-school, but I'm off work until I get through rads. I'm lucky (but wish I was going back to work...).
Pink, you mentioned the 'out of body'...it's a good description for that day 3-5 feeling. People keep asking me what it feels like. I think it's pretty much indescribable, but 'out of body' is a good starting point.
I'm heading into my 'good' days. I'm scheduled for last round on the 11th and I've said this already, but praying my blood will allow this to occur on schedule.
Okay...I'm going to be the first one to raise this and maybe get kicked off the forum for it but I have to ask: someone suggested to me to try medical marijuana to combat side effects. Does anyone know of anyone who has tried this successfully? I'm not a smoker and it's not my thing, but wondering if this is something that works for the kinds of SEs we're experiencing. Use for medical purposes is legal in Ontario.
Happy Monday everyone. It's HOT in Toronto and I can't differentiate between humidity and hot flashes...
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Hi Mumford, Happy Holiday! The 10 "good" days are upon us. Medical marijuana is legal but not yet totally available here in Nevada also. I can get a prescription from my local dr and go to several contiguous states and buy it, but cannot drive it through states in which it is illegal. My MO says that not being a Nevada doctor, she cannot prescribe it but she knows patients who have legally and effectively used it. She said if I try that route to be sure that I don't use "street" marijuana. Apparently there are huge safety issues. Medical marijuana can be formulated without the hallucinogenic chemicals - as a matter of fact, that is not the part that helps with se's. That said, there is a prescriptive medicine called Dronabinol that is a synthetic cannabis. It is pretty effective. It says that disorientation is a rare side effect, but the sample I took (treatment #2) knocked me sideways. I was non-functional for hours. I sat on the couch and giggled. If I stood up, I had to hold on to something because my head literally spun. I was at the peak of "nausea days" and that was totally obliterated within minutes and stayed gone for the same disoriented hours. "If" my nausea cannot be controlled by the other meds I have, I might take it, but since I truly hate having my brain scrambled, it's probably not worth it to me. I don't know what other positive effects it has on side effects, because that first dose overwhelmed me. Of course, maybe if I cut back the dosage it might be better. I'm thinking, like my MO, it is a viable option.
Today I'm going to do something fun! Don't know what it is yet, but that's my plan.
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Mags -- glad you got out for a bit! You look awesome in your wig. Yes, it is a bit breezy down here, even today.
raindew -- hope you're taking it easy; yes, having BC can get overwhelming at times. I think of it as having a chronic condition that I will have to monitor for the rest of my life (however long that may be), like heart disease, diabetes, etc.. It will be a chore, but I want to see my children grow up for as long as possible.
Coyote -- thanks for sharing your experience with synthetic medical marijuana. I know it's anecdotal, but it gave us a sense of how it might work. Hope you do get to do something fun today!
Re: nails -- I haven't noticed any discoloration (yet); in fact, I'm surprised they're still growing!
Pool is open; will take the boys after lunch.
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Mumford, I'm glad you asked about medical marijuana. It's not legal in any form in Oklahoma, but if it were, I'd use it. My son has been instrumental in getting the issue on the November ballot in Florida, he works with the Florida Cannabis Network (FLCAN), and his wife works for Law Enforcement Against Prohibition (LEAP), so we've had lots of discussions about it. There's a thread on the forum about Phoenix Tears, which is an oil produced from cannabis. Look for a YouTube video called Run from the Cure for more info about it. Several countries are doing actual research on the use of cannabis in actually treating cancer itself, not just the side effects. My cousin's mom had melanoma, my cousin tells me she used cannabis in the treatment, along with other alternative stuff, and used it right up until she died at 95 or so. My other aunt who died of breast cancer used it only to treat the nausea and appetite loss, but didn't stay with it. There are quite a few studies you can look at for information. Apparently the THC component is important, but it takes time to get the body accustomed to it so they start with small doses and increase as it is tolerated.
Let me just say that though I was a hippy in my youth I was never into drugs as I didn't like feeling out of control. But I've never seen the point in marijuana prohibition. I mean, it's a plant that grows wild all over. It's been used as a medicine for centuries, including by our own founders. And prohibition was a political play from the start. If you have reservations about legalization, I would encourage you to do some research.
Ok, off my soapbox now. Happy holiday!
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Wow you all have been busy! I've been away for a week on a family vacation. Wonderful time (and I got to eat some poutine and some Niagara peaches too!). Returned home Saturday night and had blood work done Sunday morning... and my platelets are in the toilet. Only 63 and they need to be 100 to go ahead with chemo, so it looks like I'm having another week off. Crud. I've only done 2 cycles so far and was hoping for many many cycles on this trial, but this is the 2nd time my platelets have been low already. The doctors keep telling me there's nothing I can do to help the platelet count and we just have to give it time. Ugh. Worried.
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I guess I join you a little late, my chemo started July 23, and I am half way thru, we'd I get my third round out of four CT rounds. I find myself so frustrated and anger over all of this and ask if anyone else does? Here is my short story if I can make it short. Went in for mammogram on march 2, called back for a second one march 3, where I sat for hours before they got to me, then sat for hours more than 3 before they got me into the ultrasound, were the doctor I think cam in eventually never introduced herself and man handled me and walked out, when the tech told me to walk over to that door and set up an appt, at that door I found out I needed a biopsy. Scheduled biopsy for march 26, the night before I got a bill for $1400 saying my insurance would not cover anything. Talked to clinic the morning of and they told me don't worry it will be covered to come on in. I went in, doctor walked in as I am lying on table to do biopsy, asked who was paying when I said don't know she walked out and refused to do it. Changed insurance, had to start all over again. Had mammograms in April scheduled for biopsy may 2, only day all month doctor could do it, then doctor refused to this day to give the results, I had to send them for second opinion that said I had dcis. Went to surgeon, scheduled lumpectomy June 5, major problems with scheduling it they wanted to wait till July, and then refused to allow my guide dog to be in the hospital, she is my eyes and goes everywhere with me. Surgery said I had IBC stage 1, since doctor was so sure it was only dcis he did not do lymph nodes, but he did not get it all and a schedule surgery was set up for June 25. Second surgery showed IBC stage 2a, 1/7 lymphnodes, grade 3. Chemo started July 23, radiation will start oct 13.
First I am angry from the treatment of doctors walking out on me, doctors refusing me reports, and doctors not getting it all the first surgery, and doctors telling me they promises it is just dcis, then promising it is only stage 1 and can not be anything but, then telling me it is stage 2, I feel they all lie and say whatever.
Second I am mad, angry at oncologist, she does not return my calls, she never answers emails, she has been asked to prescribe side effect meds and she does not, or she prescribes something else 48 hours later but does not call to tell me this.
Then she tells me this is a team effort and I am not playing as part of the team. It is an HMO, that is the only choice I have, and HMO with this insurance or with the other insurance who walked out on me.
Believe me I am not even hitting all the things they have done to me, an urgent care doctor wrote I went to her with a child, when I had my service dog, she wants to know why I don't trust her, I said because if you think me dog is a child you are hallucinating and should not be practicing, they refuse to talk her comments out of my chart. The nurses told me I could not leave before surgery because I had wires in me, they had told me right before surgery I had to stay over night, which I did not want because I needed my guide dog, they refused me my cloths, after all that, they had lied to me there were no wires in me, and they said it was to get me to stay and have the surgery.
I am suffering with side effects that I know there are meds from but my doctor refuses to answer a call or order me anything. I have mouth sores, diarrhea, open sores on my skin, unable to sleep for days at a time, bone pain, lymphodema, and the only meds she allows me is meds for queasiness.
I just want it to be over, I have a treatment on Wednesday, where she will tell me again that I am not working as a team member, although I have not even called her at all this three weeks, although a doctor did because I showed up in urgent care bleeding and it would not stop so he called her office, I am told she would not get on the phone with him. I am thinking of taking the treatment and then not going back for the last treatment. That will be three out of the four and then I can move to radiation and maybe I can just take the hormone meds without ever seeing a oncologist doctor because I really do not trust this doctor, and she is the second one, the first one is even worse and I fired him, if I fire her they said they will not give me another one.
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Giles, that is unbelievable! I don't know where you are, but that is the kind of behavior that needs to be reported to a medical board. I would suggest, if you are in the US, to call your local office of the American Cancer Society and tell them what you've gone through. They have advocates for cancer patients, and hopefully they can find you some solutions.
In the meantime, welcome to our thread. If you page through, you'll find others who are going through the same or similar protocols, and what we've all done and taken to relieve our side effects. You're not alone. We've all had challenges, and we're here for each other.
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yes I am in US, Washington state. They keep saying it is me, I feel like because I am blind I am getting secondary care. I had hoped when I switched insurance it would be better. I don't like it but I can live with them not giving me info in Braille, and I can live with them not letting the service dog into the OR, but the rest is just really making me so angry and I have tried to report it, everyone says it is some other agencies problem. The state says it is the insurance company, the insurance company says they can't control individual doctors, medicare says they have no control over the doctors, and since I pay $312 a month for coverage, and have a $3000 deductible which I almost hit with the first insurance and then the second insurance wanted another $3000 deductible I just can afford anymore or change again till next year.
Being blind, I only get information online since the oncologist will not give it to me in any other format. So the first round I just dealt with the side effects, which are not to bad, but could be better. I had sore in my mouth, asked for meds got none. I had some diarrhea which Imodium took care of, so over the counter, bone pain and aches, which against the doctors orders it took naproxen for, she told me I was not a team player by going against her, she told me to take tylonal, but after 7 days with no relief and still up most nights with bone pain, I took naproxen three days later all pain was gone.during that time I called her office daily and she did not return a phone call.
This time I had sore mouth, sores on body and worse stomach problems from upset stomach to diarrhea, especially after I cut myself and could not stop the bleeding, the doctor who stitched me up gave me keflex, which caused more diarrhea, and after calling and emailing the doctor several times 3 days later I was giving bactrim instead,which she did not call to tell me, but that has not helped, it has been 12 days now and still no relief. I am due for next treatment on Wednesday and still have not got back to normal from last treatment.
I can make it, but for me it is a big help just to know others are not going thru the problems with the doctors refusal to do her job. They keep saying it is me. I am like finding my own solutions to most of these side effects. I call only when I need to but I keep being told I am not a team player. To me we don't have a team and I should be the leader of the team not the doctor, when I told her this she said that if I don't like the treatment she is giving I can go somewhere else, but the insurance company has said if I don't stay with her there is not another doctor within thirty miles, and being blind and single I doubt I could commit to getting there so I have no choice.
Saying all that, it has not been as bad as I thought it would be, they said I would lose all my hair, half way thru I lost half my hair, lost none this time around half came out the first round. I have upset stomach but not to bad, I have not had low blood count, the sores in my mouth only last a few days, sore on body last two weeks but they don't hurt. I have gained 12 pounds. Body pain has stopped because I take naproxen against doctors advice, but I have had arthritis before all this and that is what it is from. My sugar levels are high from steroids, but they won't let me take cinnimon which is how I have always controlled my sugar levels which were always ac1 count 5.6 and are now 7.9 and going up daily. My biggiest problem is diarrhea and I am just tired of it, the rest is no where near as bad as I thought this would all be.
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One little tip I can give you, if your pain is from a Neulasta injection, over the counter Claritin can help, taken a couple days before and after. I'll let the others chime in with their suggestions.
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Gilesmt: Wow. That's a lot to deal with, but I rather imagine if you have been legally blind for a fairly long time, you have had many challenges to deal with and overcome - not the least of which is how other people deal with your challenges. I'm sorry that you are having to go through these obstacles to good medical care. This breast cancer thing is upsetting enough with all of that. I'm lucky and have wonderful doctors this time around.
As far as what the doctors did and didn't. If it doesn't affect what is happening right now, try to let go of it. If this is really the only option you have for a doctor, deal with it as best you can and do what is needed to save your life going forward. Don't let your anger and frustration over what is over and done with eat at you. As far as the staging of your cancer goes - new information gave them new results. Mine changed too.
Is there an advocacy group for the legally blind there? Is there a resource for braille translations? Is there information on tape? Can you tape your appointments? Perhaps those are avenues that would help deal with the information difficulties. I suspect by reading your posts that you are a very independent person (much like most of us here.) Now might be the right time to get some extra hands on help. I don't think any of us here could really "do it alone". This is a very humbling experience. Our bodies and souls are very exposed.
A lot of the treatments for our side effects are not necessarily prescriptions. Yes, there are some that are, but for example my mouth sore treatment is frequently used mouthwash made up of water, salt, soda and xylitol ( a sugar substitute from a health food store). You know about Imodium, but the GI stuff can swing the other way and cause constipation. Stool softeners can resolve that. (Others have other effective remedies that I have not yet needed.) At the suggestion of my MO, I tale a Pepcid in the am and pm and a GasX as directed on the box. Those are also OTC.
Okay, here's an interesting thing. A few posts up from your first one, we were discussing medical marijuana. I know that it is legal and easy to come by in Washington. I have two adult sons who live there, and they told me how to get it if I need it. According to them, it can even be prescribed at the facility that sells it. It does resolve nausea - I'm not sure if it deals with other GI upset - if you need to go that direction.
Best of luck to you.
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GilesMT: I worked with the National Federation of the Blind for many years and would recommend you contact them for assistance in dealing with the
discrimination you're experiencing from your health care providers.The National Federation of the Blind is an organization of over 50,000
members, its ultimate purpose is the complete integration of the blind into
society on a basis of equality by removing the legal, economic and
social discriminations. For contact info call 410-659-9314 or go to their web site at https://nfb.org/contact-us0 -
thank you all for your suggestions, I like someone suggested don't want to get bogged down with what has happened, I really needed to vent about it because it is not a one time occur acne but a weekly or every appt, and with six different doctors, so it is ongoing and starting to just add up in me and we all know you can't let things bottle up. I needed to hear I am not along, that we all have struggles and we all need to forge on. So that you all for that, there is a service for the blind but they are only for if you are newly blind or looking for a job or working and need accommodations to keep your job. Yes I have been blind a long time, since I was four due to an accident. I have never really had a health problem, so I never really had to deal with this much, so it is new to me. Not getting the info in Braille is hard, but I also don't get bills in Braille or explained to me, and I have nurses who think it is okay to push you onto the scale. Until jan of this year I lived in eastern washington, and had the same insurance but it was a PPO and I had the same doctor for 15 years. Now I have a HMO and it is one facility and huge but very much a you have to fit our way we do not fit our facility to you. So it is a learning curb. I do very much understand that blind are the least accommodated disability out there, people are afraid they might lose there sight if they stand near me.
Anyway, I will be reading and asking questions about breast cancer and moving forward, thanks for letting me vent and it may come up again. I am single and have no one to vent to here at least no one who also understands how it feels to have breast cancer and also doctors who are incompetent, at least some of you will understand a little. My ex has been my biggiest supporter, and has been great with being at every appt and treatment, and after every surgery, but he is useless when it comes to how it feels when you just don't trust your doctors knows her own body parts and she is working on yours.
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Gilesmt - I also had to have a second surgery because the surgeon did not get it all the first time. I was originally told that I would be getting a lumpectomy and some pinpoint radiation. When the pathology report came back, it was a different story. Now it's chemo, them herceptin for a year with radiation at the same time and 5 years of an anticancer drug. I felt like everything was exploding around me and I'm still in denial that this is really happening to me but this is how I cope. My oncologist also has an attitude and acts like he's too good to answer my questions or give me information, other than the book his nurse gave me to read. Everything I have learned to take care of myself and the side effects I have suffered, I have learned on this website from these ladies. We are from all walks of society and if we had met before this, we may not have even become friends but we have bonded in our determination to help ourselves and each other. You are finally in the right place.
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gilesmt: The National Federation of the Blind is not just for the newly blind, it's an organization OF blind people, and they will help you fight for your legal rights, like having your your dog with you, and access to info
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Laying here with the pre chemo steroid shakes. I'm in the chair tomorrow.
Giles, I was diagnosed with stage 2 IDC, with a 3.8 cm lump in my left breast. The surgeon wanted to do a lumpectomy, but I insisted on bilateral mastectomy with no reconstruction. After the surgery it turned out the lump was 5.8 cm, 4/8 nodes malignant, as well as cancer cels in the chest muscle and also in the right breast, all of which took me to stage 3. Did the lump grow 2 cm in a month? Why didn't the other cells show up on MRI or PET scan? We'll never know.
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Gilesmt: I apologize if I didn't sound very understanding with my advice. To be honest, I probably can't fully understand. The "walk a mile in your shoes" idea is likely very appropriate. Puffin's information about discrimination was rather stunning to me because I can't imagine discrimination against anyone, much less from someone in the medical field against someone who is blind. But that could be my naiveté and ignorance speaking. The National Federation of the Blind may have some really good answers for your situation - as well as some help.I agree with Blownaway about the "oncologist attitude". They do come across as if they feel superior. They can project the idea that it is their way or no way. It is possible that they are inexperienced with dealing with individuals with you particular need set. Really, what are the statistical odds in that?
Last time I went through this, I used a tape recorder at all of my initial doctor appointments. I don't need it now because I understand it all too well. Prepare your questions in advance, print them out for your doctor to see and record the responses. Tell her it is to help you get a better understanding of what is going on. It's the truth.
Overall, I believe the advice I game to you is what I would give my daughter if she were in the same spot. I'm pretty pragmatic. The bottom line issue for each of us is surviving this. It is a very serious matter. When friends have said, "You're so strong." I tell them that we all have adversity and after we throw ourselves on the floor, scream and kick our feet, we get up and do what we have to do. I enjoy a silly TV program called "Project Runway" in which Tim Gunn, a mentor to the contestants, is frequently heard saying, when things get tough, "It's a make it work moment." We are all living in that moment.
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on my way to get an ultrasound to see how much this tumor has shrunk. Then follow up after with my breast specialist. I'm hoping to get some answers about what type of surgery I need so I can make plans for the holidays, since I'm doing chemo first.
Today is day 6 after third treatment and I'm still having acid reflux although it's better. The biggest issue is that I'm so fatigued. I walk up the stairs or go to one store and my legs and body feel like I've ran a marathon.
I'm gonna start juicing again this week to get some good stuff into my body
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Pink: We are all excited to hear the news. I feel like we are all d'Artagnan - "all for one, one for all, that is our device"Since I have been drinking fluids like a fish, my fatigue has lessened considerably. How's your water intake?
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Mumford - thanks for getting back to me. I'm real good at just ignoring it - it's what we all have to do to get through breast cancer. I can't think about what if this doesn't work, or what happens a year from now. My oncologist wasn't overly worried about the numbers. They're abnormal but part of chemo, so I'm not going to worry. I'll do the ol' "I'll cross that bridge when I come to it!" I've only had my liver checked the once, so I'll find out the schedule and we can compare numbers. Thanks for talking me down.
We visited Niagara Falls and Toronto three summers ago. It was beautiful, and I love poutine! We went to Montreal a few years before that and have really enjoyed the Canadian experience. Toronto and the islands were gorgeous. A nice break from the Florida heat.
Mags - I've never met you and that wig looked absolutely natural. Just perfect!
Blownaway - it's funny you see your brother. I see the same thing! It's annoying that I look so much like a boy right now. Can't wait til reconstruction begins!
PinkNinja - holding out good thoughts for you today. Shrink, baby, shrink!
Round 3 of 4 tomorrow!
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Hello Ladies
) I am happy to say Thank God I am done with the AC part of my treatment.. 4 rounds Dense Dose Complete in 7 weeks... This past round #4 has hit me so hard... I spent the entire day Sunday and Monday bloated where I looked 6 months pregnant, full of gas with non stop diarrhea and feeling miserable... That has been the worst of my SE during the AC treatment... I am hoping that the Taxol is a lot less agonizing and I can catch a break with my stomach.. I spent the past few days in and out of bed and the bathroom.. Today I am at work hoping that I am on the mend...
Mags, you look awesome...
Happy Birthday, Jennliza I hope you had wonderful day
Slappysquirrel I sooo love the black hat, Thank you so very much, its beautiful and I can't wait to wear it.. I sent you a PM with my address
) JenKay, Puffin, and Mommymel Hope you are all feeling better today
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Feeling better today, getting around the house without the walking stick, though will probably use it when I go walking out in the yard this afternoon
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For All My July Sisters ♥ One Step At A Time ♥ To Healing ♥
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Here I am in the chair. I'm pleased to report my blood work was excellent, all normal, WBC even a bit high. So relieved. Made appointment for rads doc next round. Hopefully to be finished before Christmas. I got some info on a couple of our annoying SEs. Doc says the leaky eyes and runny nose are from the taxotere. Don't know if it's the only one that causes it.
Shirley, I wore my new cap today and have gotten lots of compliments on it. I wore it stripy side out as the blue is a little greener than this blouse, and I love it. Took a pic.
Pinkninja, I will be especially praying for your ultrasound results to show lots of shrinkage!
JoeysMommy, congrats on finishing your A/C! Yay!
Puffin, glad you're getting around better. Use that stick when you need to, no falling down!
Everyone, thanks for the compliments on the wig. I'm still not very confident wearing it.
Cousin is here with lunch and a chocolate shake for the red devil. Later.
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Mags, you look great in that hat! No wonder you're getting so many compliments!
Does this mean you are done with chemo and moving on to rads?
Congratulations!
Shirley
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coyote did not mean to have you think you spoke rough, you did not and not her you said did I take bad. So far I am really liking the fact I found a place people understand. I am overwhelmed by many things some all you can understand some you may not but at least I can vent my frustration and move on. I don't expect anyone here to understand my blindness, but hopefully you can understand how frustration it is or was to have all this information about BC and not have a way to read it because it is not in your language which to me is Braille, usually, but because of the three surgeries at the moment with neuropathy I can not even read braille and especially the meds that are prn and on different days I have no way of reading up on them.
Anyway I just don't want to get bogged down on that, I feel great for all your support and I am especially looking at you coyote since we have almost the same diagnosis, except mine is pr and er +.
Here is a question, you all seem to have lost your hair, I was told I would, mine only thinned, I was hoping to lose it. To be blind and have to shave legs and armpits for all these years, I wanted a break especially if I have to put up with BC, but it has not happened. Mine thinned on my head, but I still have some, and it thinned in private but still have some. But my legs and underarm and arms, and face is still growing hair, it seems non at all fell out of those areas. My doc told me I would lose all of it by second treatment, then said definately by third treatment I would have non, and I still have half a head full and all over my body. Anyone else like this? Will it all fall out? When?
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gilesmt - I lost all my body hair by the 3rd treatment. I still have to shave my head (which is still about 1/4 of the hair I used to have) but thats all I have to shave.
All - Disappointed today, I thought today was to be my last chemo but doc says I will have 2 more after today. He is reducing the Taxotere some because of my feet issue so maybe Ill have fewer side effects overall.
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