Starting chemo July 2014
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As my 16 year old grandson says, "Oh, man!" This is not a good news morning. Mags and Ladyb, I'm so sorry about the news you have each shared.
Mags, What? Why did your MO not tell you this last April? They "think" it might be cancerous? Can anyone say "PET"? You must be stunned. I'm thinking you need a boat load of answers. FYI: When I went into my RO interview before I started chemo, he told me that there would be a focus around my clavicle and sternum, even though there was no indication of a problem there.
Ladyb, Where was the clot? Gilesmt was just told she had lung clots. One of the ladies that gets an infusion at the same time I do has a picc. It runs from her upper arm. One of the differences is that she can't get it in the shower for some reason. Another July Team gal has a picc-line. I'm glad you have confidence in your medical team. That helps a lot.
Breast cancer and its treatment are not easy undertakings - physically or mentally. We are all so vulnerable at the blink of a moment to either. My prayers are with my sisters.
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glad to hear those of you starting taxol are doing well. I start taxol on October 14th. A/C once again knocked me flat. I am going in for fluids shortly. I slept for 12 hours because I was so wiped out. Are you ladies doing taxol taking l-glutamine? I will be and MO said ok. Hang in there everyone
Nancy
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Nancy - I've had two rounds of weekly Taxol and have been taking 30 grams of L-Glutamine and also B6 daily. No neuropathy problems so far, but it's early :-) Taxol has been much better than AC so far. Good luck!
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Just looked at the common side effects for the Sancuso chemo nausea patch... constipation. Gee, maybe that was my problem this time. Oh chemo and chemo side effect drugs, why do you confuse me and my intestines so much???
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Ladyb: I had a picc line. They inserted it with just a local...no issues and it doesn't take very long. It goes in your biceps area. The only thing about it is that you have to have the dressing changed and the line flushed fairly frequently (I was told every few days and I was also told once a week). I found that the dressing would last a maximum of 4 days, so I would get it changed fairly frequently. Coyote is right, you can't get it wet. There's stuff you can buy at Home Depot that basically looks like green saran wrap on a handle. It makes it easy to wrap your arm. We would wrap the stuff around the upper arm several times, then tape the top and bottom with plastic adhesive tape...a bit of an inconvenience. There is also an actual picc line cover that you can order if you're going to have it for awhile. Google "picc line cover for shower" and see what pops up. The upside is that you can take anything out (blood) and put anything in (drugs) with no pain, no fuss, no feeling whatsoever...no need for Emla cream and all that. Good luck with it.
A beautiful weekend in sunny Toronto coming up. I hope you all manage to get outside and enjoy whatever your weather person brings you, even if only for a short walk.
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Mags -- I'm with Coyote on this one. I would be surprised if my doctor(s) told me about a possibly-cancerous lymph node all of a sudden! Wow. But, you've taken the news very serenely. I guess the RO must have convinced you that there's a plan, and that the plan has a good chance of working. Hope you're feeling better today.
Nancy -- I haven't been taking L-Glutamine during Taxol, but I don't have problems with neuropathy either.
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Actually we had discussed that node back in May when the PET was done, but I didn't realize then that it was moving me from 3A to 3C. In order to have removed it they would have had to break into the chest cavity like they do for heart surgery and determined that it would be better handled with rads. So I did know but I guess I didn't realize that they thought it was probably cancerous.
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I have followed this July thread as My DH is the one with BC and although he started chemo in March due to complications he was off chemo for over 2 months and started back in July. I often feel odd posting . Let me say that seeing your support for each other is incredible and very touching. My thoughts have been with you as you get through this. My husband's port was removed in May and he then had a PICC to complete chemo. Amazon has the covers and they were very reasonable price wise. They are meant to be for one use but we found if he was careful he could hang it up after he showered and it would last several days. Also, I flushed his line every day to be sure it would not get plugged. They have clot busting meds to put it if it does, but he had to have the first PICC replaced within a week because it plugged up so I was extra careful. My DH had his last chemo Sept 1st and now he starts radiation this Monday. Hang in there and get through this! This fight to get through this is an emotional roller coaster yet they won't let you off the ride.
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July warriors!
Just wanted to let you know I've stepped out of the chair for *hopefully* the last time.
Let's see what the next few days bring (well we can guess...). In the meanwhile I am fighting for all of you!!
Mags - will they be able to diagnose if the lymph was cancerous? Or will they just treat it as so?
Btw, I have a ton of l-glucamine powder...bought it before tx 1, then kind of hated taking it and luckily have had no neuropathy. Happy to mail it to any July warrior in need (it's expensive!).
Let me know.
Rain
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ladyb, sorry to hear about your blood clot, glad you only have three months of treatments, I have to do at least six because it hit my lung. I don't know about a picc line I. Your chest, but it can tell you one in your arm or in your groin is not bad, or at least it was not for me, when I had dialysis I had a picc line in both my arm and my groin, but that was many many years ago. After my kidney transplant things got better and neither picc line has been used for 15 years or more.
Anyway, I actually felt pretty good today, went for my rad dry run, I start on Monday.
I will say being blind giving the shots twice a day by myself is not to fun or easy. Also my veins are shot, it took four pokes to get just a small amount of blood for the test that has to be done daily for the clots, it also not easy to get to the lab, it takes a lot out of you when you don't drive and have to go across town daily, but rads will be the same so I get to practice, Hopi g every day I will fell better anyway and in a few days won't feel it at all.
Still praying for those who need it.
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Mags, Even with the hint that there might be an issue with that node, I'm sure that you are still stunned.
Rain, Yahoo for you! It's healing time!
Oddducklady, It's wonderful for your husband that he has such a good supportive care-giver. I know, because at our house that falls on my husband... I don't know what I would have done without him. I also know that it is hard on the care-taker and hope you are getting supported too. Thank you to/for those who love us.
Giles, Radiation does have its own set of issues, doesn't it? - like getting to it every day for several weeks. Not always an easy thing to do. For me, there are two ways to deal with it. Drive 150 miles a day, or stay in St. George four nights a week; or I guess a third way - some of each. I understand that toward the end of the treatments, you get more uncomfortable with it. I need to get my research going.
Wishing all well for a good week-end.
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I had to go back and read so much to get caught up. After the 4 th tx, it really knocked me down. My labs actually came back good so I'm not anemic. The extreme faitigue and burning in my legs when I walk is just the cumulative effects.
I'm hoping today I won't need to be laying down most of the day, cause that's what I've been doing since last infusion. I hate not being able to go do what I want to but I can't even drive because of the blurred vision and depth perception issues.
I've made an appt to meet with the plastic surgeon next month to discuss surgical options and I have to have another mri/ ultrasound to see how much the tumor shrank.
Congrats to those who are finishing chemo, lucky ducks! I cannot wait to be done.
I love the gratitude list and wanted to add mine:
1. I'm grateful for my husband who is so compassionate and loves me so much that he really lays down his life for me every day. He has never complained about anything and he treats me like a princess
2. I'm grateful for my church family and friends who pray for me daily and text me and send me cards
3. I'm grateful for my dog who will not leave my side, even laying next to me for hours on end just staring at me
4. Grateful for each of you who who willing to share your lives with us on this board.
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RainDew: congrats on finishing chemo, such a milestone to put behind you
I drove yesterday for the first time since my last chemo - just over to the grocery store, managed to push the cart around for 25", totally wiped me out. Rested and then Lew and I went to the movie The Equalizer with Denzel Washington. Good story but violent, but then I expected a story about a vigilante justice fighter would be.
I find it strange with my legs that they get really bad after I've been sitting for awhile. Couldn't believe how weak they got that 2 1/2 hrs in the theater, couldn't have made it back to the car without Lew's help. Have to make a conscious effort to get up and walk some every hour or so and that helps.
For those of us moving onto rads soon, be sure and check out the Fall Rads discussion group, I've seen some of you over there already. I've started preparing my list of questions for Oct 6 appt with RO and reading through their forum has helped me know what I want to ask.
Hope everyone has a restful weekend, sending prayers and good thoughts out to all of you0 -
Ladies going into Rads -- will you leave us? I sorta thought we'd all stay together, as this is pretty much the only board on here I pay attention to. If you go, I'll miss you!
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Hi everyone - I hope you are all having a restful weekend. Thats all I'm doing after a long day at MD Anderson Thursday (I was there with my sister from 8a.m. until 9p.m.). It didnt seem crowded but we sat and waited for hours between each appt (echocardiogram, port access, bloodwork, bone scan, oncologist, infusion). One lady went ballistic on them and threw a fit but it didnt seem to have an effect on the staff - guess they are used to it. My own onco wasn't there and I saw a young lady onco (I have undies older than her) that I really liked. She was great for listening and answering questions and told me I was HER2+++ then explained it - no one ever told me that before. She determined that my liver, red/white blood cell counts coupled with the Niagra Falls big D, extreme fatique and charred feet I'm experiencing was clear evidence that my body had already had enough and that I was ready for Herceptin only. So either I graduated without ringing the bell or I'll have to ring it next June when I finish with the Herceptin every 3 weeks. She even let me move those appts and my upcoming rads ro their facility that is much closer to my house (and I hope less busy) which my regular onco would not allow. He said "I want you where the technology is". She said they have the same equipment and qualified staff there. I just hope he doesn't countermand all the appts she's already set up for me through Christmas. Anyway, just to let some of you know who might be passing through my same experience, you get Herceptin without the steroids and even though they tell you the side effect are minimal, I woke up very nautious the next morning (yesterday). I took one of the strong anti-nausea pills they prescribe but as you know those cause their own side effects. MUCH BETTER TODAY! I've been on the Fall Rads board too, Puffin and like you have learned alot already. I'll be starting rads very soon since my last real chemo was 3 weeks ago. Please all of you get better very soon!
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Blownaway - Did you ever think all the extreme side effects you experienced would have an up side? I'm happy for you that all the chemo big nastiness is over - even though the Herceptin treatments will be ongoing. Congrats!
I was reading the Fall Rads board yesterday, and saw some familiar "faces" too. I still have 2 chemo sessions to go, so I'll be doing rads in November / December some time. I'm just doing "research" now. Ever hear that saying, "The devil you know is better than the devil you don't?" That is my current opinion. Funny, when I started my current treatment process, I wanted to do the rads first and my MO said no. Now I dread even starting them. But I must, must, must.
Pink, I found the down time for #4 was longer than any other. Not terrible for the whole time, but just not, "I feel good, do-da do-da do-da do" good.
We are flooding in our town again. How much remains to be seen. The river hasn't crested yet. Some say it will be worse than three weeks ago, some say not so much water. It stormed all night, but the sun is now shining bright. There is standing water all over the place from local run-off, but here the big damage comes from the small river becoming a big river from rain running off the mountains that surround us. We live in a desert valley that usually has to beg for water. Not so lately.
Take care all...
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Coyote: I saw the NV flooding on our news this morning and was thinking of you, Stay safe
Blownaway: that would be wonderful if you can have your appointments closer. Hope you continue to feel better this weekend
knmtwins: I have both Fall Rads and July Chemo marked as favorites so when I open the Forums it's easy to see which ones have new messages to check out. Wouldn't dream of leaving my chemo sisters!Having a beautiful fall day here in ND, just got back from shopping at the mall. I had a 25% coupon at the greeting card store that expires soon so I bought birthday cards for the next 3 months, should have bought Thanksgiving cards too now that I think about it. Had 13 cards to buy, I forget my arms get as tired as my legs, could hardly lift my arms and reach for the cards by the time I was done!
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Mags -- my staging has moved around a bit, too, mainly because it took awhile for them to figure out the true size of my tumor. With 5 cm and at least one cancerous lymph node, I'm at least IIIA. Interesting to hear that they have proton therapy as an option around here. Let us know what they decide.
RainDew -- congrats on finishing chemo!
Blownaway -- I've been getting Herceptin with my Taxol (and Perjeta once every three weeks). The combo is definitely milder than AC. But, congrats with finishing the tough stuff.
Coyote -- more weather drama for you! Lucky you.... It also sounds like getting rads will be a challenge, given your locale....
kmntwins -- I'm never leaving the chemo board because I'll never be done with chemo! Actually, I ONLY have 10 more weeks left of Taxol, Herceptin (and Perjeta every three weeks).
Pinkninja -- you are way ahead of me, planning your surgery. I haven't met with my surgeon since he told me we were going neo. Hope your vision clears up soon!
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Good afternoon everyone. I just woke up and decided to throw away all nausea meds and steroids. Its time to move on. I feel a little dizzy and tired but no nausea today. Maybe I'm turning over a new leaf. I love the Autumn season and just want to be out in it. I don't have the legs for walking right now but may be in a few days I will.Magdalene51- Sorry to hear the news. We never know with this cancer thing whats going to pop up. You are in my prayers.
Ladyb- While doing treatments I would see a few ladies with picc lines in their arms. So, I know it is done. Wishing all the best for you.
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Coyote - I have never had a PET scan. No
clue why? Just told it wasn't necessary, and now that I look at the NCCN
2014.1 Guidelines for breast cancer, which is like a flow chart of what to do,
they are not indicated unless stage III; BINV-10 (page 10, but
actually around page 21). http://new.24hmb.com/voimages/web_image//upload/fi...Blownaway - Ringing the bell --- good question for those of us on Herceptin. BTW, I don't think my center has a bell. What were your blood results? What treatments had you been on? How many were you supposed to do? How many did you do? Did the new MO say anything about Perjetta with the Herceptin since it was HER2+++? At only 1cm, you might not qualify, but I'm guessing 0/2 nodes means there was a possibility of nodes (I'm doing pre surgery chemo, so still have my nodes, so unsure about nodes info) I'm being so nosey as I have an extra apt with my MO this Wed. to discuss the course of chemo. At the last two apts, right before going in the chair, I've gotten the feeling he might be wanting to either postpone the rest, or put off that day's session, but it is so hard to psych myself up for chemo, that I say, I'm ready lets do this. That is why we are having an apt on a non chemo day, so I can listen and HEAR. If I can hear him, maybe I'll have some reasonible questions.
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I hope you ladies going into rads stay. You can let me know how it's going since I probably won't start until January. I have 12 weekly taxols to go. Kpmacmill and elainetherese thanks for letting me know how taxol is going.
Kpmacmill do you take L-glutamine everyday?
Blownaway I am so glad things are changing for you for the better.
Mags so they don't know what the lung nodule is? How big is it do theyestimate? I have 3 all less than 5 mm. They didn't seem to be concerned about them. What are they saying about yours? I was told half the people walking around have lung nodules they just don't know it.
Hope everyone has a great weekend.
Nancy
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Nancy, this is actually a lymph node that is located behind the sternum. I do have nodules in the lung but they have been unchanged since found on CT scan in 2011.
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Nancy - yes I take the L-Glut every day. It's supposed to help with mouth sores and rebuilding the stomach lining too, so I figure it can't hurt.
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Geez mags I must have chemo brain. Have no idea where I got lung nodules from - sorry. I hope you are doing well. I still admire you tackling that TAC treatment. That one did me in very first treatment.
Thanks kpmacmill. I bought two huge jars of L-glutamine. Do you put it in water or yogurt or????
Nancy
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Well Nancy, I will confess #5 has been the worst. My tongue is burning so bad. My appetite is completely messed up. Erg.
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knmtwins; this cancer episode is recurrent - an underarm node gone bad. The PET was to determine if there were mets. Hooray, there were none found. My MO said four PET scans are allowed (by medicare) for a lifetime for each cancer incident, so when to use one must have a doctor discretion element to it.
This flood is now receding. Certain areas of homes in the valley received water, but fortunately, the water levels were not as high as predicted. Things are getting better. Thanks for the good wishes.
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Is there a search for this specific thread? I get so confused!!!!
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Lady B,
I had an infected port that wasn't taken out when it should have been...allowing the infection to strengthen and spread. Though there is talk that chemo leaked in the port too....no one knows.
Anyway, they want to put a PICC line in my arm too. The infectious disease doc said no...at that time. I have at least two more taxol treatments unless I do more and Herceptin till July of next yr.
I've had one Herceptin only and one taxol only in my veins...a bit uncomfortable compared to the port, but not awful. So since I've had such a nightmare with putting lines in my body...I might just forgo the PICC line....unless finding veins gets too difficult.
Mags- I did go back to work last week...on wed, not Mon. I've been vastly improving daily...and even had chemo this past Fri. Had taxol only not Taxotere/Carbo. Though I may add Carbo to my taxol treatment this fri....I wanted to see that my wounds were healing.
I just pray my plastic surgeon can do something about the giant holes left in my chest that is healing from the inside out...the scars ain't gonna be pretty!
Sounds like ppl are coming close to the end of their chemo. I know I can't wait....just trying to decide to listen to the ONC and only do 3 treatments or do more. I want this over sooo badly!!!
My fiancé who is an chef and sommelier...is cooking a 3 course dinner for 2 of my good friends who came to the hospital almost every day of those horrific 12 1/2 days in hospital....the least we can do to say Thanks!!!
Hope everyone is having a relaxing weekend!!!
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for those taking glutamine....I've been looking on the net(yes) and there's all this stuff about how it can contribute to tumor growth. So did u gals decide to take cuz the tumor was taken out with surgery or to heck with any controversy out there?
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Eeek dancingdiva where did you read that? My MO said it was ok for me to take. She said there really isn't any evidence it will help, but it won't hurt. Now I am worried. I didn't even know there was any controversy. My MO won't let me take much - she's very conservative. I asked about vitamin B6 to take with the l-glutamine and she firmly said NO.
Mags - I'm so sorry #5 is so rough. I just know the first and only TAC treatment was miserable for me. I sure hope you feel better soon. I had horrible stomach pains, but they were high up like my liver. Scared the bajeebies out of me.
Coyote - glad there is no mets. I had a pet/ct scan at the beginning of all of this and it scared the crap out of me. I learned I have a few things that I really didn't need to know about thank you very much. None of it cancer, but still.
Jennliza - I am so happy you are on the mend. Though I wasn't posting much I always read this entire thread and hoped you would get better. So happy you are.
Nancy
Ok so I went online and found this article about glutamine. Read down to the last paragraph before the bibliography.
http://www.huffingtonpost.co.uk/aidan-goggins/glutamine-and-cancer_b_2740348.html
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