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Anyone starting Chemo in Feb?
Comments
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Welcome Linda and Wayover20 - wow! Our little group is growing. I see we're from FL, VA and OH and I'm in central PA. Too bad we can't have a meet & greet.
I too am on FMLA after surgery and will be intermittent for chemo. I'm a computer geek and work from home so it's not a big deal for me. It also helps that I have a very understanding Director (male, no less) who's Mother and sister have gone thru this.
As for clinical trials, you can go to the official NCI website and see what's available. www.cancer.gov and click on the ClinicalTrials tab. From there you can narrow it down to Breast Cancer, the stage and your area by zipcode. Clinical trials target a very specific diagnosis (for my particular trial, I qualify with a stage 3 diagnosis - >5 cm w/1+node and meet all their other criteria, but the onc must submit you for approval. Additionally, my hospital is a trial site. Different hospitals are selected for different trials. The particular one for me is NSABP-B-38 (the only reason I found it was that I remembered it had a -38 in the title
Once you select a trial from the list, the trials sites are listed at the bottom. You can also review the information at both the patient and provider levels. It wouldn't hurt to ask if there are any clinical trials available to you.
Have not shopped for a wig yet - I'm kinda out in the boonies and I'm not sure where I can go. I know I can send for some, but I'd sure like to be able to try on different styles. I will be attending our FGLB program February 12th - maybe they'll make some recommendations.
Gotta get busy - be back later!
Phyllis0 -
Welcome Wayover20 to our little group.
Karen: I had to have myself drained 3 times at the surgeons office. He likes to get the drains out as soon as possible (5 days after mast) and just had me pop in occasionally for a quick drain. He said the fluid was a sign it was healing. I kept telling him it looked like my boob was trying to grow back. Not being drained anymore and it is healing very nicely. Now if the damn port would! I swear this is worse than the mast. I feel like I have indegestion/heartburn or something. I guess it is the swelling from the placement. Being so thin it looks like a big knot sitting there.
Being self employed I don't have the luxury of taking paid time off. Just lucky my husband and I work as a team. I worked in the medical field years ago as a Lab Tech. Did hepatitis and HIV testing at a blood bank. Depressing job I did for 11 years.
No one ever mentioned trials to me but from what I can tell I am getting standard treatment and was the told the extra rounds of T was to be aggressive at my age (45).
I know some of you are not getting the port but how about everyone else? Am I the only one to be uncomfortable 2 days after having it put in?
Marsha
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Hi everyone,
Thanks for the info on FMLA. Does anyone know if I need to get something from my onc first and bring it to my H/R person? I work for a big corp and our H/R is pretty impersonal. Luckily, my mgr is great and anything I want to do is fine with him.
Welcome to our group, Wayover20! I'm sorry this is your second time here. You're right, though, this place is a lifesaver. As long as everything turns out ok with my scans and echo, I'm due to start chemo on Feb 6th so we'll be together on our first week. I'm ready. Finally, on to the next step.
Marsha - I'm sorry to hear that you're having trouble with your port. It just keeps getting better and better, doesn't it? I'm schedule to have mine "installed" on Monday.
I thought I remembered reading that you were having 12 Taxol rounds. Are the rounds every 2 weeks? Until I get the results of my FISH test, my dr is recommending 4 A/C and 4 T. I'm 48 yo. Maybe I'll ask about it when I'm in next week. I've been having a difficult time getting information. I liked my surgeon but he was not communicative. My onc seems alot better but I've only seen her once and there wasn't any discussion about options available to me. More like "this is what we do" so I assumed the treatment was pretty standard for everyone. Reading posts from others, it seems to me that there was alot more discussion than I've encountered.
Linda0 -
Linda....I am getting 4 A/C then I have a choice on the Taxol. I can do once a week for 12 weeks OR DD x4 every 3 weeks. I'll start asking about that after I am done with the A/C. Good luck with the port. Is it the new one called "Power Port'? Those can be used for EVERYTHING!
I was just the opposite, my surgeon was wonderful and my oncon is cold as a fish. We didn't discuss treatment either he said here's what you'll be doing. CRAP maybe I should question him but he seems like the type to get pissed if I do. LOL Not that I care. When are your scans and echo? Had mine already. Marsha0 -
Marsha,
I feel like I'm learning a whole new language. I think that my onc is saying I would DD x 4 every 2 weeks so I guess it's similar to what you're doing. I didn't know there was more than one kind of port (of course). When I spoke to the nurse at the hospital last week, I asked her about whether or not blood could be taken from the port and she said no. Do you have the Power Port?
Maybe you'll have better luck with the onc's staff since they'll be the ones you'll be dealing with most of the time. I had my scans and echo this past Wed but probably won't hear anything until my appt this coming Wed. If all goes well, I should be ready to go the following week. Do you have your date set?
Linda0 -
Linda, Yes I got the power port and they can draw and infuse from it for everything from blood draws to MRI scans to IV infusion. I believe it is the lastest newest most modern form of port. My surgeon recommend it, maybe you could ask for it? It is made by Bard Access Systems and comes with a little pack that has a bracelet to show you have it, thingy for your key ring, and ID card to show.
Yes, I have been told I won't actually spend much time with the oncologist personally. His nurse will see me a week before each treatment. I think I want to do the Taxol on the 3 week way so I'm not doing infusions every week. Don't have the official start date but should be first part of Feb. Let us know how your appt goes on Wednesday.....Jeez all this waiting sucks, huh? I really sweated the PET/CT scan.
Hugs, Marsha0 -
Hi Karen,
I wanted to check in and see if your lymph pocket was any better today. Things always seem to happen on Fridays, don't they? That's why I'm hoping to do my chemo the beginning of the week -- just in case something comes up.
Thanks for all the info on FMLA. I e-mailed my H/R person today to find out what I'm eligible for. And thanks for setting up this thread.
Linda0 -
I'm sweating the PET scan cuz I'm terrified of finding mets like others have. It makes me wonder, wouldn't there be some symptoms to say bone or lung mets?? What an awful thing to think you're at one stage and suddenly get thrown into stage IV. I hate this disease.
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Dear all, count me in, too: I am 54, diagnosed before Xmas (TIIa, 2 nodes+, ER+/PR+, grade 3). I had "dressed rehearsals" for he last 20 years, so I was not even surprised (no family history, though, just a woman still soaking in her oestrogens at 54, no children). Had bilat. mast. on the 10th of Jan. (like so many other members of this wonderful site). That was my choice, in spite of tumor <2cm. Turns out they found atypical hyperplasia in left breast, so this was a good decision. Completely healed after 10 days, pain very bearable (quit the vicodin after 5 days, take 2 advils at night), was mobile and normal from the next day, although more sore now than the first week (without the pain killer). Got the drains out yesterday (15 full days). Had all the tests done this last Thursday (cardio ultrasound, very thorough, bone scan, CT scan of my head only, lungs and blood tests with tumor markers -- do not remember the name). I was worried sick, but everything came back very good, no "visible" spread. Because I am overall in very good health (ironically), "my" oncologist, here in Denver, is including me next week in a clinical study (200 women in the US), with BOTH groups receiving avastin. The whole chemo protocol starts mid-February, dose dense, every 2 weeks, with a bone marrow booster in between -- forgot the name... emasta??. 4 tough ones, 4 milder ones, like everybody seems to be getting here, then 4 more months of avastin and tamoxifen or arimidex, that I do not know yet. Had I waited even longer to consult, I would have missed the study... I work at home, as a medical translator from English into French: 30 years in medical imaging, radiotherapy, digital mammography, CAD systems, you name it... I translate the operators' manuals and user interfaces, service manuals and safety guidelines... you can imagine what I read everyday... Working at home "a la carte" of course makes a big difference as far as fatigue and comfort are concerned, and I send all my sympathy to those of you who have to go to work no matter what, somehow.
I do not know the specifics of the protocol, I know I'll have a port placed in my left arm (no lymph nodes removed on that side), inner side of it... Do you have any idea of what this is, at such a location?
I used to live in the French countryside, by the sea in Northen Brittany, and I am grateful we are now in Denver: I completely trust the medical team here, and people are so nice, supportive and positive, it makes a huge difference. Not to mention that's this site is so inspirational: so many posts witnessing the courage, humour, compassion of all of you, with a special award to the younger ones who simply amaze me... We are all in this together and will try our best to help in anyway we can. Those who are dreaming of going to Paris and need travel tips, let me know, i'll be glad to help you shape your post-treatment project. I'll post some recipies, too: cooking is a big stress-management thing for me plus I view it as my responsability to feed us properly (did not prevent the BC, but may be instrumental to cope with surgery and treatments). At least that's what the surgeon + onc seem to believe firmly in. Please keep us posted on your chemo process and how you are faring through this journey. I wish you all the very best.Hugs, Catherine0 -
I will be starting chemo on Feb 1. I am starting chemo prior to having surgery, as a CT scan found a less than 1 cm lesion on my liver. I have positive nodes as well, and the thought is to shrink everything with chemo prior to surgery.
I have to admit the staging workup was intense. I had CT scans, echocardiogram, bone scan, breast MRI, node biopsy, stereotactic breast biopsy. Also had a red cell TAG assay done to try and rule in a hemangioma on the liver, but that was not to be. So they know what it isn't, but not what it is. Monday (the 29th) I will have a liver biopsy.
I had a power port installed on 1/24, so I am set to go. The orientation to the chemo center was a little depressing, but I am ready to get going. Looks like AC every two weeks for 8 weeks, and then surgery end of March. Very small breast tumor, so lumpectomy is planned, and full axillary removal.
I went wig shopping today in Boston, and it was a very pleasant experience. They were able to match my color and style perfectly, so it should be an invisible transition. I am a little vain about my hair, and eyebrows and eyelashes, so 1 down, 2 more to investigate!
I can't believe it has not even been a month since diagnosis. I feel as if I have been on another planet since then, where time is different that on the other planet I used to live on.
People tell me I have developed a sense of humor, and that I am funny. We'll see.
I can't tell you how happy I am to be with you all as we start. Looks like I will be the first of the February gals! I will be there with you and for you.0 -
My FISH came back negative also after a 2+ at biopsy.
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Welcome Catherine and Leah!
It's all so overwhelming, isn't it?
Sounds like most of us are having the same treatment.
When I read Catherine's story, it makes me question my own surgery. I had a lumpectomy but there was never really any discussion of alternatives. My tumor was 2.4 cm. My breasts are very dense and the surgeon had to go back in to get clearer margins. I was so distraught at the time I didn't question anything. I spoke to my surgeon during my last visit about my concerns but it didn't really help. I keep having thoughts that I should have both of them removed.
Leah, it sounds like you've been through alot. I hope things go well for you on Monday. I'm really nervous waiting for my test results to come back. Can I really handle one more thing? Guess we have no choice. You said that you got your port put in on 1/24. Have you been having any problems as far as discomfort?
I checked in to the Jan 2007 chemo site and they all seem to be doing well with their first round so I'm hopeful for us. I actually think we're going thru the worst part now. But, hey, I'm an optimist!
Take care all,
Linda0 -
Leah,
The woman who owned the store where I bought my wig had just finished chemotherapy. She didn't lose her eyebrows. She said it was the only hair remaining on her entire body. Funny.
I looked at eyebrows at her store and they looked pretty nice. I think I'd probably do better with the glue on type than trying to pencil them on. I'm not much of a makeup girl.
Linda0 -
Hi Linda,
My HER2 was positive (2.4), but by the FISH method, it was negative. It's a much more reliable method. I'm glad I wasn't told the first HER2 result before the FISH was done.
Cynthia0 -
Hi Folks!
Are any of my February sisters triple negative?
-- Hillary0 -
Linda,
My "lymph pocket" (seroma) is growing. I can't imagine waiting until Monday but then I don't think it needs the ER. I can't even put my arm down straight. Anyone else have this happen on a weekend?
Yes, my doctor had to complete the second half of the FMLA papers to "certify" the illness from an MD. Karen0 -
Karen --
Call your doc immediately -- there should be someone on call who can can get back to you with answers your questions!
-- H.0 -
A big welcome to Leah and Catherine from me also.
Karen - I feel for you. I still have my drains 12 days post-op and as much as I hate them, I'm afraid if they take them out, I'll be in your situation. Just wondering why I'm still draining so much for so long - had the original appointment to get them removed last Thursday and they reschedule to tomorrow - judging by the amount this morning, I'm very concerned they won't be able to take them out then either. Hope you are able to get some piece of mind today - when I was discharged from the hospital, my doctor left me with a number to call any time of day with questions or problems - perhaps they could arrange for an inpatient nurse to aspirate enough to get you thru till Monday? Just a thought. I don't think we should have to pay ER fees for problems relating to surgeries.0 -
The port seems to be doing fine, other than a wicked black and blue region over most of left chest. I can see the incision as I am allergic to all dressings, so they just paint this clear NuSkin stuff over it, and it is about 1.5 inches across. I think my surgeon did an especially good job of burying it pretty deep, as I can't feel it if I just glide my finger over the area. It is just sore now.
From another board, "help me get thru treatment", EMLA cream (a lidocaine numbing cream) was recommended to be put on 1 hour before treatment, so you don't even feel the pricks through the skin. I got a free tiny tube from the Center at orientation, so didn't even need to get a scrip (one less co-pay!). I'll let you know how that works!
I will say my sugeon told me she had put in quite a few, and I think that makes a difference given what I have read on the other boards.
Hope everybody is doing ok..0 -
Welcome Catherine and Leah to the Feb group. Sorry you need to be here but together I know we can all get through this. So Leah...you are going backwards from the rest of us? My docs considered doing the Chemo first but my tumor was too big and my breast too small (itty bitty titty)! Sorry to hear about the liver but much better to get all this taken care of at one time. Yes this is another planet we live on now. One woman described it as the Twilight Zone and I find that very much the case! Also you are the only other person I have found who got the Power Port. my surgeon recommended I get it, apparently it is more $$ but he said MUCH easier on me with the draws, scans and infusions.
Catherine: Sounds like you are getting a picc line if it is goiong in your arm. You might want to ask about the Power Port and why they are doing the arm and not the chest? I've been doing some guided imagery and part of that is imagining a time in the future when you are healthy and happily doing something you like. I think I will make mine a vacation to Paris!! I am going to go online and get some mental pix of the French Countryside! Also I've started working with an acupuncturist to build my immune system prior to chemo and she is also working with me on eating healthy and getting my body more alkaline and balanced. So we can share the "cooking". I do know this, BROCCOLI and CAULIFLOWER are two of the healthiest veggies out there so stock up. But not raw they do need to be cooked. Actually I was told NO raw food at all. Go heavy on Protein, she suggested grass fed beef (oh thank god I do love red meat) but not to over do. Protein shakes, high carbs, low sugar. Almost any fruit/veggies and try to stay away from processed food. She really wants me to avoid dairy (crap, I love cheese). She promised not to be the "food police" but to do the best I can. I told her once I start chemo, if I can't eat the things she said, screw it, I'll eat whatever I can stomach LOL. If anyone is interested I'll pass on all the suggestions she gives me to boost immune system.
Helen: I am not triple negative. There is a thread here just for the triples, I am sure you can get some good advice there. But stay here for the chemo, we need you!
Girls I know we can do this. AND since we don't have any choice (teehee) we must hold each other up. Hopefully I will be having a good day when one of you is having a bad one and vice versa. Love to all and big hugs to my new friends and sisters, Marsha0 -
Good morning everyone,
Cynthia, thanks for the info on your FISH test. Seems like a number of people in our little group had a HER2+ and then it turned out to be negative so I'm hoping mine also turns out that way. But, if it doesn't, I'll just do the Herceptin in addition to the other drugs. I'm going with the flow at this point and trying not to worry so much. It's bad for the immune system.
There's a thread 'Tips for getting through Chemotherapy' that I was looking at last night that was interesting. Someone was asking earlier about anti-nausea meds and it looks like there are 3 that we should be taking. Emend, Decadron, and Kytril or Zofran. I'm supposed to get all my scripts on Wed so I'm taking this list with me.
Marsha, that would be great if you can share the suggestions you get from your acupuncturist on ways to boost your immune sytem. Giving up dairy would be tough. I'm a milk and cheese girl. I've been listening to a Deepak Chopra CD 'the Soul of Healing Meditation' that I love. It kept me from completely falling apart after I was first diagnosed back in Dec. I think it'll be great to listen to during chemo.
Linda0 -
Hello everyone. I would love to come aboard your chemo cruise launching in February
I was diagnosed in mid-November, had a lumpectomy and SNB on Jan. 3. Sentinel Nodes were clear so things looked good until my entire pathology came back. They thought I had 2 tumors in my right breast but turned out one was a cancerous intramammary lymph node. Sooo, back to surgery for me on Mon. Jan 29 for a complete node dissection. I was supposed to start chemo beginning of Feb but now it looks like late Feb. I wish you all well. I have 7 children and 7-3/4 grandchildren. Although I enjoyed a wonderful career in aerospace, my family was/is #1. I just turned 54, by the way.
Can't wait to cheer all of you along, if you have room for one more Linda #20 -
Hi Linda2,
Welcome to the group! We not only share our name but also a similar experience. I was so relieved when I got the news after my second surgery that SNB was clear. I didn't get the path report until 10 days later when my surgeon returned from the holidays. Third surgery was 1/15.
I wish you well tomorrow in surgery. It'll be 2 weeks tomorrow since mine and my arm is starting to feel alot better. Been doing the exercises to get mobility back and it's working.
It's great that you have such a large family to support you. We all have to count our blessings ... we're still here, there's alot of treatment options that weren't available in the past, and we have each other for support (I think there's 11 in our group) -- and now we're going to kick some cancer b...
Linda0 -
Linda2 sorry you had to join our group but we do welcome you and will be here for you and know you will be here for us. I know how disappointed you must feel after the final path came back. Ouch. Good luck on your surgery tommorrow. Make sure and let us know how it went as soon as you are up to it. You will probably have drains so I will sugggest a fanny pack to wear around your waist to put the drain (looks like a hand granade) in and that way the tube doesn't dangle which can be uncomfortable or pull out if left hanging. That was one of the best advice someone here gave me. And by the way, I like it! "The Chemo Cruise". The Feb. Chemo Cruisers, has a nice ring, what do you say girls? And Linda #1 let's just call a spade a spade, we are going to kick some cancer ASS! Hugs, Marsha
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Oh and Linda#1 first off go to your health food store and get Host Defense made by NewMark. It is 100% organic mushroom supplement that kills 400% of abnormal cells. I mentioned it on another thread and the response was good. One girl who works for Whole Foods said it is the best supplement on the market for ultimate immune boosting. I go back to Barbara (my acupuncturist) tommorrow, she is pulling a list of other supplements she wants me to start on right about the time I start chemo. I'll let you know. Marsha PS Sorry about the dairy, at least try to do organic dairy....the hormones injected into cows is unbelievable!
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Marsha(kb): thank you for answering: I'll definitely ask about the port this coming week.
For the French country side pictures, of course the Internet is a mine. Even if you do not speak French (but maybe you do?), there are sites (TF1, one of French TV channels) with regional videos, patrimony doc (castles, Mt St-Michel, etc. which are quite nice -- I visit those not out of nostalgia, but it's nevertheless like being there a little. Let me know whether you want me to send the exact links (if you Google TF1 you can then browse, a headset is a must for the sound...)
You are talking about "imaging", and I have realized how much this helps me: I have a "treasure chest" in my mind/memory, which I open at will when I am under the MRI machine, or during the bone scan or other similar not-too-fun-stuff-to-do, and I "pick" from this treasure chest a walk from the many wonderful walks we used to take everyday with our doggies, along the coastal custom trails of Northern Brittany, and I feel so lucky I have the memory to do this mind walk, remembering every stone, bump on the trails and vistas, I can even feel the iodized maritime air. I focus hard on every detail and light ambiance I can remember (never 2 days alike by the sea, and changes constantly during the same day), and it is very helpful to stay zen.
For the acupuncture tips and food advice, please, forward the info to all of us here... I am awashed, and have been for years, in broccoli and cauliflower (the main cultures in Brittany, fields and fields of the stuff, plus artichokes...), I eat mostly cooked veggies (the macrobiotic way, I'll post the recipie in the corresponding section for those of you who are not very veggie-oriented...), I try to go slow on sugar (and never use any refined sugar or bleached flour and no fast food, no processed food -- I spend a lot of time in the kitchen, listening to NPR and classical music, jazz, etc. my noise box is always on while I cook, very therapeutic for me). Now, my BC (IDC grade 3/3, TIIa) is almost 100% hormonal (very high ER+/PR+), they told me food is not the issue here, but explains maybe why I healed so fast: 10 days for bilat mast). I have no idea of where my immune system stands, but I can't even remember when I had a cold last (10-15 years ago??). But working at home and with no kids around, I am not exposed much to germs... except for my dogs'...
The diet you describe has been ours for as far as i can remember (married 25 years to a wonderful man who is grateful for the way I cook).
I also turned 54 last december and 2 weeks later got this diagnosis as a present... But I happen to believe that everything is for the better in life, even if not obvious at first (to say the least)... Russians believe the same thing (vse k lutshemu). If anything it led me to this wonderful site which makes me want to hug and encourage every one of you, and brings me strength to cope as graciously as possible.
Bon courage to all... Catherine0 -
Hello Feb Chemo Cruisers.
Just checking in - Linda2 - good luck tomorrow. I'll be praying for you. Check back in as soon as you can to let us know how you're doing.
-Melody0 -
Linda good luck with surgery. Let us know. Karen
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Hey Catherine...my tumor was not caused by food, etc either. Purely hormone driven (ER/PR 97%). The diet ideas were for before/during chemo because we will be prone to infections, low immune system etc. I too never got sick. Can't remember the last time I went to the doctor. Healthy as a horse for 45 years until this. And what a shock to be constantly going to a doc! I never watched what I ate but never been a fast fooder, don't drink sodas, but man oh man have I ate some processed food and hormone fed animals! I will definately pass on any tips given to me by Barbara (my acupuncturist) to anyone interested. Hugs to the fellow chemo cruisers, Marsha
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Good luck and prayers today to Leah and Linda. I'm off to have my port installed. Yippee!!!!
Catherine, your writing is beautiful and inspiring.
Linnie0
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