September 2013 Chemo Group
Comments
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Wing: I posted something on the August site for you, so in seeing that you had "moved," I'll repost:
My oncologist has said the same about the DD Taxol, but after looking at all the most recent studies, I am leaning towards 12x weekly. The long-term results are the same (which is what he is looking at with less time), but the side effect profile is much better w/ the 12x weekly regimen. There were some articles posted this summer from the 2013 American Society of Clinical Oncology Annual Meeting comparing the two (though the DD Taxol was 6 rounds to get the full 12 weeks). Weekly had more blood-related side effects (i.e. low white blood cell counts) and the two-week Taxol had more allergic reactions, bone pain, and neuropathy. The doctor that presented was actually from Memorial Sloan-Kettering (where the DD Taxol approach was pioneered) and said that the results would change the way that he practiced (12x weekly with fewer side effects). Anybody with more input on this, please share! I have one more AC (next Wednesday), so he has given me three weeks to decide.
As for RBCs, the Neulasta only raises WBCs. I've noticed my RBCs are dropping each time as well. I believe there's a shot they can give you. I stay pretty nauseous for about four days after the AC, then not much appetite. The second week, I try to make up for it and eat lots of red meat and I'm trying to figure out other foods that will raise your RBCs quickly. Any help would be greatly appreciated!
LisaSp: Loved the idea about coloring on a page. My 2-yo grandson is coming in this weekend (and two-month-old granddaughter), and his mom says that he can't color on my head because they're really trying to teach him not to color on his body. (LOVE, LOVE, LOVE 2-yos!!!)
Batcatlady: Thanks for the instructions on making a "gaul."
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Hi, you guys. I found a lump my gynecologist missed and the mammogram missed. It was metaplastic which is rare, and I opted for cytoxan and taxotere instead of ACT double dose. They are doing a trial between these where I am being treated but I am not doing the trial. The side effects for adriamicin scared me too much. My first chemo was September 4th. So far I have had neuropathy in my fingers (which the oncologist said didn't happen that early--I fired him for a variety of reasons), I have had an ungodly rash on my hands which has gone away but which required a steroid cream and benedryl, and my tongue swelled up so much over the last week-end I was concerned about breathing and eating. The oncologists said that was not related to the chemo and to go to ER or urgent care if it got worse. They pretty much have lost all credibility with me, which is pretty scary since I feel stuck with this and with them. Anybody have the neuropathy and tongue swelling and get advice from an interested and competent provider? I have been getting remarkable relief from Traditional Medicinal teas for most of my symptoms--sinus, sore throat, constipation and the tongue swelling. I used the PMS tea since it is a diuretic and that actually ameliorated the symptoms. (Who knew? I also started a period last week-end, too). It is day 14 for me and my hair is actively leaping from my body. Oh, there was a bruise around my vein where the IV went in, and the vein itself was kind of red for a period of days. My focus and thinking was off the first three days, but it was manageable if I really concentrated and was deliberate about any given task.
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Solution, I'm sorry you are in such a difficult spot. I had a slight bit of neuropathy in my toes but it pretty much subsided before my second treatment. It might not be a permenant thing - let's hope. The first chemo is so tough because you don't know what to expect. I found the first week to be tough, the second week to be hit or miss and by the time I got to my third week I was feeling pretty good. Now that you have some idea of what to expect, it may be easier this second time. I'm also doing TCx4. I had a number of side effects: ungodly heartburn, thrush, swelling and edema in my face, abdomen and hands. Most of these side effects were caused by the steroids and my onc reduced my doseage. I'm not sure if the steroids may be causing problems for you but it's something to look at.
I hope you can find an oncologist you can feel more comfortable with. Mine isn't a perfect match either and she's been wrong about a few things so I know it's frustrating. Those Traditional Medicinal teas are great. I also love Yogi tea, especially the ginger one. I found that Kombucha tea and Kiefer were really good at getting my body (especially my G/I tract) back into alignment. I've been doing skin brushing to help with moving the lymph around, started with the oil pulling today - anything just to experiment and see what makes this journey easier. It sounds like that is kind of where you are since you feel somewhat abandoned by your providers. Some people feel that acupuncture helps with the neuropathy. My doctor said it wouldn't help to prevent it, only manage it - but my onc isn't always right on things so I'm going to go ahead with it if neuropathy becomes an ongoing issue. Also, vitamin B and l-glutemine are recommended for neuropathy prevention. I have both and have used them. Hang in there, you aren't alone!
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Nicole-- you will be on that trip in no time!
Everyone it sounds like you are all doing great even if having to manage the SEs. They will pass but it sucks until they do. Plus a lot if us are moms, taxi drivers, laundry and dish ladies, chief cook, etc....so we just keep swimming :0)
Blood counts: I took Wheat Grass for my reds and also some chlorophyll drops. Wheat Grass has actually had small clinical studies done on it. You can also grow or buy fresh and add it to smoothies. They are from plant sources and I asked my onc after checking them out at:
http://www.mskcc.org/cancer-care/integrative
It is a great site for checking out supplements and vitamins, herbals too.
I took several things for my mouth and also neuropathy. I gave my onc a list of things to say yes or no to and if he said no, why? It even included Tylenol, Claritin, vitamins, etc..
Sure he thought I was nuts, but he did it. I told him I wanted to be "Naturaly Proactive, Not Pharmacuetically Reactive".
I had few SEs, (blessed I was) and while my white counts dropped my reds didn't drop and I was never anemic. My onc was shocked and said all chemo patients get anemic. I also avoided most mouth stuff and the only nerve stuff I have goin on is in my ankle that was broken. I did not receive Neulasta. (please don't think I am bragging or gloating, I really am just trying to share in case it can help someone)
I also asked onc for Metanx. It is script for a blend of B vitamins that is much more absorbable than OTC. It is used for diabetic neuropathy and they are starting to use in chemo patients. My ins didn't cover it and generic is $38 for 30. The Bs are not so antioxidant so I could take it everyday. B Vits help with all sorts of stuff but one thing is helping the sheathing on the nerves to stay strong.
Constipation can actually be neuropathy of the nerves that contol peristalsis (sp?) of the intestines. The nerve disruption can stop/slow the movement.
Steroids can cause the constipation too so I started stool softners on Sundays, roids on Monday's, and chemo on Tuesday's. I took them until usually thursday, twice a day. I figured it was easier to slow it down than speed it up !
I took Chaga mushroom pills for immunity and WBCs. Doc wasn't as thrilled with that one! But if you look it up they are huge for anti-cancer and other stuff. They are big anti-O though so I didn't take for two days either side of chemo.
Good luck everyone!
Lynne -
Nicole-- you will be on that trio in no time!
Everyone it sounds like you are all doing great even if having to manage the SEs. They will pass but it sucks until they do. Plus a lot if us are moms, taxi drivers, laundry and dish ladies, chief cook, etc....so we just keep swimming :0)
Blood counts: I took Wheat Grass for my reds and also some chlorophyll drops. Wheat Grass has actually had small clinical studies done on it. You can also grow or buy fresh and add it to smoothies. They are from plant sources and I asked my onc after checking them out at:
http://www.mskcc.org/cancer-care/integrative
It is a great site for checking out supplements and vitamins, herbals too.
I took several things for my mouth and also neuropathy. I gave my onc a list of things to say yes or no to and if he said no, why? It even included Tylenol, Claritin, vitamins, etc..
Sure he thought I was nuts, but he did it. I told him I wanted to be "Naturaly Proactive, Not Pharmacuetically Reactive".
I had few SEs, (blessed I was) and while my white counts dropped my reds didn't drop and I was never anemic. My onc was shocked and said all chemo patients get anemic. I also avoided most mouth stuff and the only nerve stuff I have goin on is in my ankle that was broken. I did not receive Neulasta. (please don't think I am bragging or gloating, I really am just trying to share in case it can help someone)
I also asked onc for Metanx. It is script for a blend of B vitamins that is much more absorbable than OTC. It is used for diabetic neuropathy and they are starting to use in chemo patients. My ins didn't cover it and generic is $38 for 30. The Bs are not so antioxidant so I could take it everyday. B Vits help with all sorts of stuff but one thing is helping the sheathing on the nerves to stay strong.
Constipation can actually be neuropathy of the nerves that contol peristalsis (sp?) of the intestines. The nerve disruption can stop/slow the movement.
Steroids can cause the constipation too so I started stool softners on Sundays, roids on Monday's, and chemo on Tuesday's. I took them until usually thursday, twice a day. I figured it was easier to slow it down than speed it up !
I took Chaga mushroom pills for immunity and WBCs. Doc wasn't as thrilled with that one! But if you look it up they aremhugenfor anti-cancer and other stuff. They are big anti-O though so I didn't take for two days either side of chemo.
Good luck everyone!
Lynne -
Oops That last on posted twice,
I too had water retention and put 15 pound on and off. They are mostly still on but I'm working on that!
I also had "Taxotears". Eyes itched and watered constantly halfway after my last treatment. Did it just a little on #2 and a little more with #3. Just in the third week.
I also got terrible acne like rash on both sides of neck and up behind ears. Steroids are the most likely culprit. Worst on #1 & 3. On third round started cuttin my roids to half the night of and day after chemo.
I made clay cold wraps and chile my hands and feet for nails, neuropathy and hand foot syndrome. My left ankle got hit hard since it wasnt fully recovered from being broken and surgery, and 3 of my right toes got a slight tingle after #3 but my hands stayed fine.
I will be happy to share the list of supps I took for mouth and neuropathy. And stuff in general. Right now I am up and log us down so I am lazy. Blaming it on today's anesthesia!
Solution-lots of hope things will get better for you soon.
And hair....I am 5 weeks PFC and have babies! -
Hello all, I'm another of the August gals branching out.
I had second infusion on 9/10. Some of symptoms were the same, awful taste by evening, tiredness hitting 3rd day out. In response to Josgirl, Neulasta pain hit me the first time day 5 combined with the tiredness. The second time was different. I recovered for a couple days and felt better, then the bone pain hit day 7. I had labs today and they said that did happen. My mouth is pretty sore this time also. I am rinsing with several different mixes. Hope it gets better soon. I still have some hair, pretty pathetic though. Wearing skull caps all the time. Got quite a few from the American Cancer Society and a nice looking wig. These are free in case some of you don't know. For you Oregon gals, I bought the cutest hat at New Seasons. A lady in Helvetia makes them. I get so many compliments on it.
Wishing everyone the mildest of SE's.
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Hi, I am a member of the August group. I do have a port and am so greatfull for it. I can't stand needles. I just finished my 3rd A /C 1 more to go..yeah. Then i start 4 cycles of taxol. 6 weeks of radiation. I get a neulasta shot 24hrs after each session. It amazing me that some of you give yourself the shot. I asked about a nurse friend to give it to me. Not covered by the insurance unless its given in the onco office. I do have side effects, mouth sores and Bo ne pain. I also have noticed that my anxiey level really high. I wish each and everyone cure for this disease. I know how hard it is going through this.
God bless and stay strong.. -
Hello Ladies: I am coming over from the August group too. I beleive as well but would like a more chemo focused group. I am going for my last infusion next Tuesday but know the se's will last much longer. Hope everyone is doing well and everyone coming close to TX day is doing okay with the nerves.
Love, Rayna -
Hello all. While everyone in the August group are nice and well-meaning chemo support and related issues are what I'm here for too. It's definitely welcoming to see several of you I already know and thanks for the kind September ladies for being inclusive.
I've been happy to avoid mouth sores; I have consistently sucked on popsicles during infusions ( or last time a huge sugar free Slurpee), constantly brush my teeth with Biotene and use the Bio tene muthwash and drink CONSTANTLY.
I take Neulasta which keeps my white bloods elevated but I am low on rbcs. The only thing to take for that drugwise is Epogen, and if you were seriously anemic you'd need a blood transfusion. This loss of rbcs really contributes to the fatigue.
Solution, have you been able to go for a second opinion? Sounds like you really need one!
Martie, like the hat! -
Hi all...I also am from the August group. I can't sleep so I thought I would say hello and best wishes to all who are starting out. I am sure there are many of you also that had cancer/ chemo messed up their sleep pattern.
Pam I saw you are from Minnesota too. Are you getting treatment in the cities or at Mayo or neither. I am guessing from my name you'll know the area where I am from. -
Heading in for treatment number 2 in a few minutes. Anyone else heading to the chemo "bar" today? Good luck to all and welcome to our newest additions to the group.
Solution- I hope things will get better for you.
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Good Luck Baby Ruth
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MankatoState- yes, I can guess where you are from :-)
I've been traveling to Duluth. -
Go get them BabyRuth! Kicking' it to the curb!
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Good Morning All!
Floradix is a liquid iron supplement that doesn't cause constapation. Might help with anemia.
Wheatgrass tablets are cheap and are supposed to help with RBCs so check with your oncs and see ifmyouncan take them or put fresh in juice or smoothies!
Almost Friday!!! Wish all of you a light SEs weekend! -
Babyruth: Good luck with you tx today, hope all goes well.
Love, Rayna -
Good Luck Baby Ruth!
I am still waiting..waiting...never thought I would ever say I was looking forward to Chemo but I am. The surgeon said "Chemo ASAP" when the tumor board made a change in my treatment. But guess he didn't consider the waiting, days & days, now another week, to get an appointmnet with the oncologist. My cancer center navigator was on vacation for two weeks so never did any networking or scheduling for my case. (and I guess oncologist are kinda busy too huh?) So I am hoping I will still fit into the Septemeber Chemo group time frame!
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Raynaj--yeah for your last treatment! I did TC too and last round wasn't bad at all! I did get lazy but for no other reason besides that I just could! Adrenalin drop I guess because I was done! I let myself relax since I didn't have to stay geared up to make it to the next treatment. And the three week wait in between is tough!
Good luck to you and everyone! -
lighthouse- You still have your hair as well? I am post 2 treatments and still have mine also! It thinned but I can still wear in a low ponytail and I am very gentle with it! I wanted to see what my hair would actually do, so I chose not to do anything until I have to. It is bothersome worrying about it all the time, but Atleast I still feel "normal" longer then I thought I would. Cheers to us, I guess!!!
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Babyruth: Good luck at the chemo bar. I was just there Monday and it seems that besides fatigue, everything is smooth for now. Typically. I get more SEs in the second week though.
Vintage Gal: Since you haven't started yet, get to your dentist right away and get a tooth cleaning. That can help you avoid mouth sores and you cant do it while you're having chemo. Since I have asthma my primary care doc got me a pneumonia shot too (even though I'm not old enough yet). While he was at it, he gave me a shingles shot too even though I'm 53. At the very least you should ask if you should have a flu shot before chemo.
Everyone have a great SE free day! -
Good luck to Babyruth and all others at the chemo bar today. I start tomorrow with my first chemo.
Trying to catch up on past posts. The shaving party last night was a incredible. It was amazing and actually fun. It did not bother me at all, and to be surrounded by so many friends was amazing beyong words. To top it off, my 13 year old son had them shave his head too! I am humbled and blessed. If anyone wants to see pictures, pm me and I will send you my caringbridge site name.
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BabyRuth - you're prob. already there, but I'm right behind you in the pacific time zone at 10am. Good luck!
Btw, today is Talk Like a Pirate Day, so I'm wearing a little pink tricorn (with my black & pink wig) & some skull jewelry to chemo today. Aaaarrrr!!! I like to dress up for each treatment - when I look good, I feel good -
Good Morning everyone! And blessed be the miracle of Miralax!
It's just the little things, isn't it?
I notice it took a couple of days longer to get "all the way back" from my second trip to the chemo bar. Next trip is October 3rd. Hoping to just lounge around Friday Saturday and Sunday and not be so pooped for work on the 4th.
Hope everyone is having a good day and I wish you all a SE-free day!
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Babyruth, hope your day goes smoothly.
VintageGal, the waiting is so hard as we all know. Try to keep your mind occupied as best you can. Thinking of you.
Nichole, where are you being treated? Since you spoke so highly of them I'm wondering "just in case" I might need to change. LOL
Has anyone seen the recent article on patient's being underdosed? Or had this discussion with their docs? Wondering. I'm planning on calling my Onc today.
http://news.yahoo.com/obese-cancer-patients-often-shorted-chemo-doses-052143430.html
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KBee congrats on your shaving party! So wonderful the support that you have, and how sweet that your son shaved his too :-)
Wing48 is Miralax a laxative or softener? Trying to find my magic solution too, lol.
Anyone on just Taxol? How are your SE's so far? I have 2 more cycles of AC then Taxol, and my disability is going to run out about a week or two after Taxol starts. I'm hoping the SE's are less debilitating so I don't have to argue with work over staying out.
I'm heading to the beach today for my sisters wedding this weekend, and I still haven't decided what to put on my head for the ceremony. I have a wig but I hate it - it doesn't look like the "old" me, and since I never wear it it doesn't look like the "new" me either. Every hat I've tried on hurts or is too hot or doesn't look nice enough for a wedding. So I'm thinking a pretty scarf, but that's not as easy as I thought it would be. I don't like it when it looks like a turban, but wrapping it like a bandana doesn't look dressy enough. I've been on cancer sites and jewish sites and indian sites looking for ways of wrapping scarves in a way that will work, but so far nothing looks right :-( I'm probably over-thinking it, like I tend to, lol.
Thoughts of tenacity and resilience to all of us this week!
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Hi Everyone,
I am so glad to see this site for the September newbies. I found a lump in my left breast on my 46th birthday in August...it has been a whirlwind evey since...as you all probably know. So many tests...the diagnosis...the zombie walk through more definitive tests...and the news you that scares you beyond all measure. It turns out I have two tumors in my left breast (main one is 1.9cm; satellite tumor 1.1cm)...the lymph nodes have been hit up to the supraclavicle lymph node...so Stage 3 - I am. The line of attack is Chemo first (AC & Cyclophosphamide for first 4 treatments 2 weeks apart....then Taxol & Herceptin once a week for 3 months.....then Herceptin solo for the remainder of a year every 2-3 weeks. After the taxol/Herceptin run I will get a break and we face the surgery. (No discussion of what that will be yet...)
My first Chemo was on Friday, Sept 13 and FEAR was prominient...lots of tears too. I learned very quickly that day the I get hit within hours of treatment of the AC and we spent 5 hours getting it under control. I will be more proactive on the next round....and can I say I dread it. I had a Neulasta shot this week and it slowed me down but I am glad its there to help my fight.
So many questions...so many things to walk through and learn. Any little tidbits of help are welcome. I seize up with fear sometimes thinking about this aggressive Cancer...and then I am thankful that I was so healthy to begin with so I can fight....I have two kids Logan (age13) and Skye (age 7) who with my husband Wes are my WHOLE life.
We are pretty new to the Portland area having moved from Austin, TX so my support team is back in Texas. I have some wonderful new neighbors that have jumped in to help wherever they can. I do feel blessed.
Thank you for this spot to share and I look forward to getting to know you.....Krizo
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BatCatLady--love the pirate theme today! If you have Krispy Kreme near you they are giving free dozen if you dress and talk like a pirate today! I dressed for chemo too. Got a new dress for each, even if it was $8 on the wallies mark down rack. i went with blue each time to go with my eyes and coordinate with my blue cold caps!
Jelly-- miralax is a powder laxative you mix into anything to drink. It does not add any taste and doesn't thicken like some of that stuff does. I only did TC but I started taking softness 2-3 days before and 2-3 after and it helped. Steroids can add to the problem too :0(
The wedding sounds like fun! You might check out Www.Turbandiva.com Lots of pics and a video too.
KBeee--good luck tomorrow! I bet you and your son are adorable!
Krizo--sorry you have joined the ride. These boards are full of thousand of helpful posts. -
Welcome krizo it is a whirlwind at times, very surreal. Oh My to find a lump is a stomach dropping moment but on your birthday, I am so sorry!
We just take it step by step, that's all we can do. We all need a plan, need to know a course of action but like you mention there's decisions and stuff in future months that we don't need to deal with right now.
I have been in a holding pattern & it is wearing on me! Two months on this journey but it seems I have to wait a week or more between something getting done. Fingers crossed for chemo start next week.
How have your kids been dealing with this?
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Hi Krizo, knowing it's not your first choice to be here, may I just say Welcome to Oregon. I live just outside Portland myself. Ask away, someone should be able to answer. This is a great site for help.
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