Starting chemo July 2014
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Libby et. al. BMX - no one offered me bilateral mastectomy (BMX) but since I'm doing pre surgical chemo, I need to see the surgeon again. How do you guys get this? My BS and RO were going for lumpectomy and I felt like I was having to fight for just a single mastectomy (more with RO than BS).
Fingers on keyboard. I am a touch typist, not super fast, probably 40 wpm, took typing in HS, but I find I am now not just 'fat fingering' and hitting a key next to it, but the totally wrong key. I'm wondering if part is neuropothy and part is chemo brain. I find it scary how much normal stuff I'm losing to chemo.
L-Glutamine - for those ladies taking it, are you noticing less twitching, numbness, and dripping???
Muscle twitches - so top of left eye has been twitching since chemo 1, and has increase to about 90% of the time, then right eye, then lower lid left eye, last night I noticed my front of upper leg twitching and this morning my lower inner arm twitching. Oh, my...
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knmtwins - My eyes twitch and drip constantly. My onco acted like he never heard of eye twitching.
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has anyone heard from Chaosrain? I have been thinking about her since her last post about two new tumors showing up while doing chemo. I feel awful for her and hope she is doing ok
Nancy
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I pm'd Jennliza and here is her response, which I got permission to post. She is on lots of sleepy meds, so I told her, sleep and heal, I'll update everyone.
Jennliza's "I am still in the hospital!! I have had the worst work week ever.
I am going on day 9 of being hospitalized...and I know I will be here through mon...possibly longer. Basically if I wasn't in he hospital his week, I could have been in jeaopardy of dying.
Since they didn't remove the port wheni was hospitalized 3 weeks ago, the infection spread to my leg and is in the deep tissue around the port.
I've been on IV antibiotics since last sat and it seems to be working on the infection in my leg...that is about 85% improced. Unfortunately my chest area is not doing well.
On tues they put me under general anesthesia to remove the stitches and remove many layers if skin to try to remove the infection surgically. Things seemed to be on the mend but took a for the worse Friday night. The skin around the chest wound...turned like purple red and I developed a rash....these lil pimples all over (similar tk my chemo rash). When the doctors tried to access puss from the rash ...it would turn into a blister...some blood blisters. The agony and torture I endured when they tried to release puss from pimples/rash made the pain from the port removal almost painless.
The good news is my fevers stopped on Wed...7days after they started. Then yesterday I was told my hemoglobin which was already low dropped so needed a blood transfusion....which explained why I felt so awful yesterday. Of course that took all day to finally get but they couldn't administer it at the right speed because it was too painful....because I arm is completely swollen...and my veins are shot. I only got a 1/2 bag yesterday, but it seems to have worked...numbers back normals.
Today I was 3 hrs late in getting my IV antibiotics because they had to remove the IV and could find acess again.. They finally found a tiny vein in my hand.
So now there is talk of putting a pic line in...but of course scared that will get infected too.
I have 6 teams following me case: Oncology, plastic surgery , breast surgery,infectious disease, dermatology and Hematology....and non of them really know what is wrong withe. Nothing has ever grown on any of the cultures.
Anyway, I'm about to pass out...have 4mg of dilaudid and Benedryl ..
I haven't checked the boards in a while..."
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OMG I don't even know what to say. How horrible this has been for her. Chemo is bad enough but to have to deal with this kind of set back is overwhelming. Many good thoughts to Jennliza to get past this and be ok. Hugs to her.
Nancy
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I'm sending big time prayers for your quick recovery, Jennliza.0 -
knmtwins, I requested a bmx. The 1st surgeon I saw did not want me to have a bmx. She did not argue against a single mastectomy because my breast is so small and my tumor is so big. By the time they removed my tumor, my breast would be gone anyway. My 2nd surgeon (second opinion) had no problem doing a bmx. He said he understood my desire due to only being 38 years old. He had no problem doing both and I'm happy to do it too. In the end, you should be the one to make the final decision.
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What a nightmare for Jennliza! Best wishes for a speedy recovery -- hope you can go home soon.
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my heart goes out to Jennliza and praying for her, I can't even imagine what she's going thru right now.
I also have major eye twitch and it's gotten worse in the last 2 weeks. It's. It isn't a little twitch either, it's almost like a muscle spasm.
I had a busy day, made chili for some of my hubby's friends to watch the game (Redskins!) and then several of my friends stopped by at different times. It was the most social I've been in a long time and it felt good to feel almost *normal.*
I want to spend the next few days before #4 enjoying things that I won't be able to soon. I have my endoscopy Tuesday to see if anything funky is going on with my esophagus and stomach although the last week or so I haven't had any acid issues. I am on Protonix 40mg twice a day and prescription strength Zantac, 300 mg at night. it seems to be working but then again, the last week before chemo is much better than the first 2 weeks. I'll see what happens next week.
I was wondering abut the neuropathy because I haven't had any. Does anyone have it on the same chemo as me, TCHP? If so, When did it start happening?
I'm having a hard time typing too, I spend most of my time correcting what I think I typed. I'm on my IPad now because I can't even see my phone. I'm having a difficult time driving too, my depth perception is warped and I feel like everyone is going to come into my lane crash into the Pink Ninja ( my hot rod). I'm gonna stick with my hubby being my chauffeur because it's too scary for me.
For all of you who are working while going thru chemo, you are woman! Even it's only a few days a week, you are amazing. I couldn't imagine because I feel like I go to the store and I'm overwhelmed.
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Hi Everyone- so much to read and catch up on.
Taxol #1 was a little rough and achy...my eyes are also blurry and weepy now and seems like I've got the start of some peripheral neuropathy in my fingertips and maybe a couple of toes.
Full day preschool started- poor little girl is so excited that she can't sleep during rest time at school and then passes out on the way home...and wakes up crying from exhaustion...Sigh...and meanwhile I'm wrestling with all my own insecurities at school drop off/pick up- to wig or not to wig, that is the question...don't want others to be forced into conversations they are not ready for with their littles just because of my fuzzy bald head...but I'm so uncomfortable in the wig! Doesn't help that NYC preschool life seems so ridiculously fancy...
But all in all, I have nothing to complain about....just inconveniences that need to be kept in perspective. Life has especially been a roller coaster this last week emotionally...
9/11 is always hard- i have a few schoolmates and friends that perished in the towers...and I can't help but think about how life can change in a split second. In the blink of an eye your future can change.
And then i found out that a dear friend who has already had to bear much grief in her life is asked again to bear more- her mother is diagnosed with liver cancer not 9 months after having lost her 2nd sister to bc....and then a friend with whom I'm not especially close but who has always been kind and compassionate and supportive, especially after my bmx, her 3.5 yr old daughter has gone from feeling poorly and going to the pediatrician to being diagnosed with leukemia and starting chemo in the span of 5 days...this is the 3rd incidence of cancer within a fairly small mothers' group (me being the 2nd) and it makes me so angry and so frightened about this modern poisonous world we live in now....
It's so easy to take things for granted, to get annoyed or angry or distracted with the inconsequential or the mundane... But the reality is that you do what you can to fight- for health, for happiness, for love and for life....and you must remember still in the midst of that fight to be present in each precious moment and to live with that same ferocity of spirit.
Sending healing energies to all on this board....
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Veruka -- To wig or not to wig -- I always wig if I'm in public (except at the pool -- then I wear my "swim turban"). I also don't want to start conversations or get the "cancer pity" looks. You get used to the wig -- now that it's cooler in OK, it actually keeps my head warm. Even though it's shoulder-length, my wig is also pretty light on my head, so that helps. Actually, I'm washing my wig right now in the sink and have to go rescue it and let it dry on its stand.
Thanks for the insights into Taxol #1 -- I start on Wednesday!
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VerukaNY - I'm my 5% hair cut to 1 or 2 inch at home, bandanna when I'm cold or running to a market away from the neighborhood, but the grocery store 2 blocks from home and the kids' school, I have eyeliner pencil, lipstick/gloss, earrings and the wig. My kids see me without the wig, but I don't want the other kids have to see it, or to ask my kids about it. Personally, I think I look freakish, my reflection in the mirror still surprises me.
Pink - What a game! As to neuropathy, we are on the same thing, and I have some neuropothy, and according to this, I have more than I thought, and so might you, "Peripheral neuropathy, a condition caused by damage or irritation to the peripheral nerves. The symptoms may include numbness, tingling ("pins and needles"), or burning pain in the arms, hands, legs, or feet; decreased ability to sense hot and cold; difficulty lifting the feet or toes; difficulty picking up small objects; decreased muscle strength; vision or hearing changes; and/or constipation" http://www.cancer.net/navigating-cancer-care/side-effects/nervous-system-side-effects It is VERY common with taxotere and carboplatin
Everyone - who has gotten handicapped hang tags? In Maryland the qualifications are is unable to walk 200 feet without stopping to rest. I know I have days like that... and rumor is, this only gets worse, with each round. I wonder if I should get them now, while I have the energy to walk into the MVA, so that if I need them, I have them, not to just use willy nilly, as that is horrible.
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Insomnia- I take trazodone, been using it for years. Keeps me asleep all night but doesn't make it hard to wake up, no residual drowsiness, and it's non-narcotic and non-habit forming.
Am I the only person that Claritin doesn't seem to help with the neupogen shots? I hurt whether I take it or not? Sigh.
Blurry vision- most definitely. I'm noticing it more and more. Same with the runny eyes and nose.
BMX- there was no way we were doing reconstruction without having to go into my "good" breast to keep things even (I started out a 34G- natural) so I just asked if, given my family history and the fact that they'd be cutting in there anyway, how about it? They were more than happy to oblige me.
No neuropathy so far, but the eye twitch comes and goes and it's annoying as all get out.
Chemo brain is making me crazy. I'm a very well-spoken person normally, and now half the time I end up searching for words for everyday things.
And I've been wondering about handicapped tags myself...
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Oh and Jennliza, my heart is with you! Get better soon, please!!
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Knmtwins, it sounds like I have some neuropathy! I keep thinking of getting the handicapped tag but keep forgetting to ask. I got it when I had my knee replacement surgery and I loved it, especially at Costco and the grocery store.
I still haven't worn my regular wig but mostly because of the bumps and stuff on my head. It's really cleared up now and I've been using 100% aloe Vera gel. It's starting to get cooler so I will probably wear it. I normally wear a bandana and have every color under the rainbow to match. I don't like the looks I get sometimes but it is what it is.
I take Claritin the day of the shot and for about a week after. The first one I didn't and it about killed me. I felt like someone beat my lower back with a baseball bat. Now, I get a little achy but it's manageable. I also have a TENS unit so I use it on my lower back. I have fibromyalgia too which is why I got it. It's awesome for helping with pain and feels like a massage. At least the setting I use does. If you are I tested, here's the link:
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JennKay - Claritin does nothing for me for the neupogen pain either. I spend my neupogen days hopped up on oxycodone and ativan just to take the edge off the intense pain in my legs and hips. I'm sorry that Claritin isn't helping you either, but kind of glad to know I'm not the only one. :-/
Sending up tons of positive healing vibes for Jennliza.
I'm not having a great day today. Sad, sore, just kinda miserable in general. Now that hubby has gone to work and the kiddos have left for school, I might just take the phone off the hook, curl up in front of the tv with my knitting and pretend that all this housework around me doesn't even exist.
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speaking of housework, do you guys know about Cleaning For A Reason? They'll send someone from a professional maid service in your area to clean your house for free once a month. All you need is a note from your doctor saying that you're currently bring treated for cancer.
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Neupogen vs Neulasta and Claritan's effectiveness against pain.
Ladies, I just noticed the two that recently said they are having pain are on Neupogen. How regularly, 1 shot per day for 10 days? How are you taking your claratin? I'm on Neulasta, 1 shot 24 hrs after chemo and it works the whole time. I start my Claritin on Sunday, Chemo Wed, stop Claritin Mon to Wed of following week.
I wonder if there may be a difference???
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JenKay -- thanks for publicizing Cleaning for a Reason! I had never heard of it, and many ladies might benefit. I've employed a weekly cleaning lady for the past 15 years, and it relieves some of the cleaning burden (she does the kitchen, the bathrooms, and floors). But, to be honest, my house stays clean for about 30 minutes once the boys come home (my sons loving playing in the mud --- grrrr.....)
Claritin -- I took it at first but then noticed that I wasn't really having SEs from Neulasta so stopped.
kebab -- hope you have a restful day, and I wouldn't worry too much about the housework if I were you. My house is never perfectly clean, and such is life.
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Neupogen - I do 1 shot per day for 7 days. I start taking Claritin the day before and continue taking it daily until the day after the last shot.
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I contacted Cleaning for a Reason and got a response saying they have no cleaners in my area.
Apparently they rely on cleaning services to offer volunteers, and they will do it once a month for 4 months.Kebab, when it ran my business from my home I got really good at ignoring the housekeeping, and since I retired I don't seem to be able to change that. But I really need to find someone to do a bit before I have houseguests in October. When I was working at least I could justify paying someone to do it, but now... I have to stop beating myself up. DH said, just find someone to come do it. Easier said than done. Find a good movie.
I only have one boy who likes to play in the mud, but he does have four feet.
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Question, how long do most of you have symptoms from the chemo? I have been told by the nurses and by the MO that the SE will last a week, when you will feel fine. That is not happening to me, and I read back but can not really figure out from post how long SE last for any of you.
I was released on Saturday, by Sunday the fever was up again, the diarrhea started again and I still nearly make it out of bed for a shower each day, if I eat it is about five bites and then I lay down and sleep for an hour before I can take five more bites because I am just so exhausted. Actually I eat all day because it takes me hours to get a full meal in, thank god for microwaves.
Anyway, these are the SE since last treatment, which will be two full weeks tomorrow. Last treatment five weeks ago the symptoms never stopped, they lasted all three weeks and then I had another treatment.
One other question? For any of you who do not have a port and are using iv's. Are you having bruising that last a long long time? Why I ask is that I can still see the bruise from my first iv from chemo, which would have been 8 weeks ago, the. The one from 5 weeks ago is still there, and the on from 2 weeks ago is there. Okay why I ask, I had three iv's while in hospital, all three infiltrated, all three caused blood clots, large lumps under the skin but none of them caused bruising. I am wondering why?
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Gilesmt- I'm only using IVs for treatment (no port). I had a nasty bruise at the iv site that was very red and itchy then turned black after my very first tx. The Doc thought I had an infection. The vein was watched closely. The vein turned out not to be infected but it is shot! Since then the other veins used during treatment are fine. I refused to get a port in my chest so I was willing to take my chances with my veins. I was told what the risk could be and went ahead anyway.
knmtwins- I take L glutamine powder but still have muscle twitches. The twitching started right after my third chemo tx. My nose also just started dripping. I thought it was because of the change in weather (although its still really nice out in the Pacific NW). I'm glad I'm here reading post and being educated that these are all SE's.I have a handicap placard. I got one after another cancer survivor told me to get it ASAP. The ONC Social Workfer filled out the form when I was in the hospital back in June having my BMX. Its good for 3 months. I just had it renewed for another 3 months which will carry me to the end of the year. The benefit will be that I can park right next to my job when I return to work in mid October. Then again after I have my exchange surgery in November. I figure by the first of the year I should be way past the chemo SE's and well on my way to health and wellness.
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red heeled women, can you tell me what you MO told you the risk were, I was never told anything about risks, just that they would either use a port or a vein and since it is only 4 iv's it is better to go vein.
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Definitely in down time. I'll be away for a few more days. Stay well. I'll check in when I can.0 -
I'm sitting here, waiting for a heart scan. MO wants to make sure that my heart is strong enough for another round of chemo (Taxol, etc.). Wonder how common this is, or if it's just my MO.
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Heart scans are for the Herceptin, not the Taxol, I think. How big is your tumor? Are they going to add Perjeta also, as you are HER2+? I'd ask, as it seems to be the next 'great' thing in HER2, but I think they want it 2cm or larger. But these things seem to change daily. It is also expensive, so there might be a fight the MO's office has to do with your insurance company. I had to have both the Herceptin and the Perjeta pre approved by the insurance co.
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Mumford - Thrilled you got to ring the bell - shortcut or not. You deserve it. You look adorable in your hat!
Chaos - Sorry to hear about the regrowth. You have to stay positive!
I was diagnosed at 42 and was going to have a lumpectomy until they found two small tumors in my other breast! Crazy! So, I immediately went with most aggressive treatment and had a double mastectomy. So far, cross fingers, I've had no major problems. No lymphedema, no issues with it at all. Of course I'll probably never feel the front of my chest, and some of my sides, and I have to look in the mirror to put on deodorant because I can't feel my armpits either, but I do know it was the best decision for me. I'm planning reconstruction now. My Onc didn't want me to do any reconstruction during treatment. I hope this information helps you.
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ElaineTherese,I also have scan Wed for heart. MO says they want a baseline to make sure all is well before they start taxol and herceptin. I'm still trying to recover from round 4 of AC and feel like I'm in the 9th ring of hell. Although I know many have it worse, my heart goes out to all of you. Watery eyes, runny nose, headache, nausea, diarrhea, falalalala la la la!
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ElaineThere - I was given an echocardiogram before starting chemo (TCH) for a base line and I have been scheduled for another echocardiogram before my 5th chemo on 25th September. Herceptin is very hard on the heart so they monitor it.
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