Who is starting chemo in September 2016?
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mrsmouse--Welcome! So glad to have you here. We look forward to getting to know you. This is the most wonderful place of caring, support and advice.
KD--I just asked the nurse during infusion yesterday about icing during Taxol. She said that studies have proven that icing does not change the chance of getting neuropathy or experiencing nail changes. I guess this is something very new. Up until the last couple of weeks they and the MO's recommended it and provided the cold mitts and wraps for feet. But now they will allow it only if the patient wants to do it and recommend you bring your own equipment. I will be one of those who does it. Definitely. Not taking any chances. I know someone who has neuropathy so bad from Taxol she can barely walk. My center provides the cold mitts and foot wraps if we request them, or you can buy your own on Amazon. They are about $99 a pair. Actually here's the link. They also have the ones for feet. You get a little bit of a discount if you buy both.
https://www.amazon.com/Elasto-Gel-Chemotherapy-Hyp...=sr_1_sc_12_a_it?ie=UTF8&qid=1475934528&sr=8-12-spell&keywords=cold+therapy+mits
Has anyone experienced migraines during chemo? It's happened my last two rounds on AC. It starts during the premeds, somewhere between the end of the steroid drip and the beginning of the Emend. I'm given Aloxi before both of those. I'm prone to migraines anyway and these follow true to form. Blurred vision for about half hour, then the pain gradually starts. Add that to the sinus type headache that is typical with Cytoxan (I timed it yesterday--exactly 18 minutes into the Cytoxan that headache started) Migraine pain continues for several hours, Cytoxan headache lasts into the night. There is a distinct difference in the two. After migraine pain goes away my eyes get very sore and dry, then comes getting suddenly very hungry. That's the signal the migraine is over. Dr. years ago told me these are classic symptoms. Just wondering if anyone has experienced this during chemo and if you have found a solution so you don't get it.
The good news is only one round of AC left. Thank goodness. I read something that someone wrote trying to be funny about the AC. She said that they measure out the amount that will cause you to be dearly departed, then back off just a little bit. There were a couple of days after round 2 that I actually believed that. Hoping round 3 is better since the steroids were cut in half again. So far so good.
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Ware, I am in the same boat. I cannot stand water right now and I know that I should be drinking it. I try to drink gatorade but now I can't stand that either. My friends bought me flavor packets for my water but I am not really enjoying them.
I have to have a pity party for a moment....I am a teacher but I have taken the year off to tackle this new life challenge that has been thrown at me. Last night I went to a retirement party for my boss. I had a blast when I was there but boy, has it hit me hard this morning. I miss my pre-cancer life so much. I miss my job, my co-workers, and students. It was hard seeing everybody...I just have a hard time with the "why" of this situation.
There have been so many changes in my life in this past month that I think they all just hit me. On Thursday, my long curly hair came out like crazy. I did my hair as as usual but by 8 p.m. it had become matted and almost like a dread lock. I texted my hairdresser (who is a friend) to see what I should do with it. Well, it became wicked itchy (so itchy that I had goosebumps), I tried to take a shower and condition the living daylights out of it but nothing worked. I had my husband cut off my huge dread...it was very sad for me. I had the rest of my hair shaved off yesterday. I went for the longest walk yesterday to accept the situation and move on.
I am really nervous for round 2 on Tuesday. This past round had me feeling pretty bad for a while. I finally feel great again but I know that is about to come to an end. By Monday night, I will have the cleanest house in Massachusetts (due to stress / and the fact that I can have control over that)....
Okay, pity party / venting over. Now, off to 2 soccer games and whatever the day brings.
Have a great long weekend!!!! (By the way, what does SE mean?)
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Thank you for your suggestions. I will try those out. Too much plain water getting to me.
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DennyJ-SE is short for side effect.
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Ware I am with you. Water tastes awful and oily to me. So far I let myself have one Vitamin Water a day. I do Vitamin Water Zero bc I like the taste better - and it says it has a lot of B12 and B6. My friend's husband who recently finished a year (!!!!!) of chemo really liked Boathouse drinks, also filled w B vitamins- they are found in the refrigerated section w the Naked fruit drinks. I'm reading for other suggestions too
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I ended up with thrush on day5 of 1st chemo. Lost my voice completely for 5 days now. They gave me diflucan pills for 7 days.My chemo nurse said NOT to use salt in my mouthe rinse. Just use warm water and baking soda. Said salt it too drying with thrush. They recommend Biotene also. Something else I'm doing (on my own/not told by dr) is oil pulling. You can google if unfamiliar. Swish/pull coconut oil through your teeth for about 15 mins then spit out and rinse with warm water. Supposed to pull out toxins, bacteria while also moisturizing. I figure this can't hurt! They also said to buy some cheap soft toothbrushes and replace your tooth brush every day so you don't keep reinfecting yourself.
My chemo nurse said that they tend to see that the people that get thrush, likely get it every time they have treatment. 😩
Also for neuropathy ( haven't had this yet) , my dr recommended 10gr of Glutemine powder 3 x day for 4 days after treatment. Add the power to cold things like drinks, pudding or smoothies, never to hot food or drink. I also take a super B complex vitamin.
I would also love some hydrating ideas. I ended up going in for IV fluids 2 days this week. Nothing tastes good with this thrush. I did try some all natural fruit Popsicle's--they were great. I tried adding fruit to my water, every tea I usually like tastes like BLEH right now. And coffee gives me more diarrheal. I really miss my coffee!! I did a blend of lime seltzer water mixed with coconut water yesterday . That was ok for something different.
Beebs-- thanks for the Accupuncture update. I'm thinking about giving that a go again too. Glad to hear the shingles are clearing up!
Have a pleasant, restful weekend everyone
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ware, I have days that water tastes off, but iced water is manageable. I drink lemon-lime Powerade because it tastes ok both chilled and room temp, and has vitamins. I tried infusing water or coconut water, neither were pleasant. Actually, on days right after infusion when water tastes really off, I pop in a ginger hard candy (Gin-gins) and while its in my mouth, drink a bottle or 2 of water: the candy refreshes or coats the taste buds.
Nadya, I don't ice, haven't seen anyone icing at Dana Farber. My MO convinced me not to on the grounds of cells escaping chemo. I thought if icing won't save eyebrows or lashes, then let's forget it. I'm doing Accupuncture for nausea and D and neuropathy. So far, seems to help. They told me 1 time first week post chemo should be enough, but if you can afford weekly, that won't do any harm.
Dennij I know what you mean about cleaning. I was obsessively cleaning last weekend and shopping to lack the fridge, my husbands away so I needed to be ready. I'm just lying in bed happy that the fever broke..
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Ware...I am also with you about the water....my tastes buds are gone....I have this nasty taste in my mouth that just won't go away...I am sick of water...Gatorade makes me nauseaous now..lol....I am drinking juices and soda now and I make myself drink one to two bottles of water and that's just when I take my medicine.
Yesterday morning I threw up like three times b/c I had cold on my chest..and every since I done that..its like a lump has formed in my throat...its hard to swallow food....so its like I am just screwed up this go round..lol...tastes buds off....lump in throat..nasty taste in my mouth...ugggghh!!!!!
lol
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yeah..immma ask my onc opinion on the icing next Friday and see what he says.
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Been reading through some of the comments again since I'm on day #10, chemo #1, and my head is getting itchy. Looks like signs of things to come. I've been knitting a cardigan, and am trying to finish it so I can take pictures with it while I still have hair, but not sure I'm going to make it.
Looks like most SEs are being managed better on further infusions, so that's good to know. And thanks for all the fluids suggestions. I'm still just doing water and ginger ale, but that is getting old.
I haven't had any urge to clean the house. I gave my husband the job of cleaning the bathroom until further notice. March, maybe? I'll stretch it out as long as I can...
I might vacuum sometime, though, I don't hate that as much.0 -
Seq24, gosh, I wish the nurse could provide the name of one of the study authors. I can't find a recent study debunking the possible value of icing, but that doesn't mean it's not out there. I found some clinical studies about cryotherapy and neuropathy, but they haven't concluded nor were results displaying. The study I recall reading showed an obvious benefit in terms of nail changes. As I recall, it was a small study and patients used an Elasto Gel mitt on one hand while the other hand was untreated. I don't think it looked at neuropathy. I'll have to look for it.
Beebe, how did you ice your toes? Elasto Gel boots, bowls of ice, bags of ice held in place by Ace bandages or ???
Lyn
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I am 10 days out from first round of chemo, I feel really good today but I have had side affects as well. I have a metal taste in my mouth constantly, I have a really crazy rash (upper body) for the last 4 days and I am having swelling in my hands. I am pretty positive overall, I have moments of sadness or feeling sorry for myself but overall I try to manage it. I drink water all the time and I put lotion and organic oil on my face and body morning and night because the dryness is overwhelming. My hair is thinning but still hanging in there. I like to think after the first treatments I can manage the other ones better (hopefully) but I believe that eating and exercising is so critical for staying healthy. I love all the tips I am learning! Thank you!
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Watching the storm coverage. Sam, I hope you and Emily are safe. Anyone else that was in its path, I hope all is well. You're all in my thoughts and prayers.
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We are fine so far. There has been a ton of rain but we don't live in a flood zone. I'm more concerned about trees coming down in the wind. They are forecasting 50 mph gusts as the storm moves out of the area. Combined with the waterlogged ground, there is a good chance more will come down. Thanks for thinking about us!
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Cranberry juice is working for now. I also had a fruit slushy earlier. I'm going to dehydrate if I don't start drinking more
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Hi!
I am TCHP for six treatments and then Herceptin to finish a year. At this time, I only know of surgery and radiation after this round of chemo.
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Ware you don't want dehydration it's awful I was in the hospital for it after my first infusion. Nothing and I mean nothing tasted good. I lost 16 pounds in 7 days it was rough you don't want to go thru it. Drink whatever you can..to remain hydrated.
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VLH--as far as icing the feet if the nurse actually had a good suggestion when I asked her yesterday. She said if the boots they have aren't available and the patient doesn't have their own they bring them a bucket or bowl with ice bags in it to put your feet in. That would surely solve the problem of how to hold the ice packs in place. Just wouldn't be able to recline in the chairs during that time. I think I will ask where I could see a copy of this study. One of the receptionists told me, when I was asking about using the mitts/boots they provide there is that its the doctors who are saying they don't want them offered anymore to patients. They want them to buy their own. Then when I questioned the nurse she was telling me about this study. Believe me I will be bugging them about this often. I don't want to have to spend $200 to buy the mitts/boots and I think they should offer alternatives if they aren't going to provide them.
On another note, does anyone know off hand what drugs they give with the Taxol. I knew Benadryl and steroids, but is there anything else? Do they still give the anti nausea meds?
I'm on day 2 after AC #3. So far so good. Have not had nausea or taken any nausea meds. No side effects except that my eyes really hurt. I think that is a result of the migraine I had. I did have to call the on call dr today when the Neulasta pod had finished injecting. When it finished it just kept beeping and beeping for a long time. The instructions said if it did that and the red light was flashing to call the dr. I did, got the one on call, and he had no idea what was going on. I knew the medicine had injected so he said just to take it off.
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seq24 - Emily had the same thing happen with her Neulasta pod after her last infusion. Her onc is having her come in for a WBC test to make sure her numbers aren't too low, but we're pretty sure it worked because the gauge indicated empty and there wasn't any leakage.
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Quick question....seeing I recently have no hair....I am curious, what are you all doing for hair? Are you wearing a wig? Hats? Scarves? I found some beanies on Amazon that are light weight and soft that I like but honestly it is still early to have a preference for me. I have always had long hair...never realized how warm it kept me!!! My neck has been cold so I guess I am going to invest in some cool neck scarves.
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Dennyj-I prefer scarves. I have a wig from the American Cancer Society, but I have never worn it. Around the house I don't wear anything usually except a ball cap when I go outside to prevent sunburn.
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Dennyj--I wear a wig during the day during work hours. I work from home and have clients in and out all day. I feel I have to look as close to how they are used to seeing me as possible. I actually still have about 1/4 of my hair left so once I'm done working for the day the wig comes off and I either wear a ball cap or nothing. You're right, we don't realize how warm our hair keeps us until its gone, or even mostly gone. There was one night last week where it was pretty chilly and I had to wear a soft knit hat to bed. I have 2 wigs--one from ACS which is human hair and a synthetic wig I bought and paid a ton of $$ for. I had them both cut and styled like my regular hair. I have found I wear the human hair one a lot more than the synthetic one. It is cooler and not scratchy like the synthetic. I can also style it, use the curling iron on it and everything I did to my real hair. I guess maybe that part is a mental thing for me. It's definitely more like my real hair than synthetic.
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Room temp water is easier for me to drink than cold water. I have been able to drink a little more today thankfully. I only took compazine for one day after the last treatment. I think I would rather feel a little nauseous than how the compazine makes me feel. Much better this time except not wanting any water.
I like hats better than wigs. More comfy. Less itchy.
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I wear scarves or hats. My husband has a "do-rag" I keep snitching cuz it's just so easy. The other day I was looking at the craft section at Walmart and thought....these quilt block thingies are sure fun! I took a large one home and realized it was the perfect size for wearing! So then I went back and got a bunch of fun ones!! Pretty ones, ninja turtles, wonder woman....I'm sure they thought I was making one weird quilt!! Lol! I also have a wig I wear if I have to go somewhere nice or if I just feel like dressing up that day. I have taken a step and really just done what makes ME feel good inside. I'm not one to have people look at me....now they do. But I try to look back and smile!!! Weird....but I'm gaining self esteem in the weirdest ways. This is a bizarre journey for sure...
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If not for the cold, I'd go sans anything at home, but I've been battling a cold since the buzz cut, and shedding is still ongoing, so I sleep in a soft cap and walk around in a cap or a scarf. Outside I wear a wig, though don't enjoy it. Neither the human hair expensive one, nor the synthetic cheep one are comfortable. I think because I am still shedding and the scalp is sensitive. We'll see how it feels when Im shiny bold
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Smilethrupain...shiny bold! I think that's my new favorite term! ;-)
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Hey everyone..need to seriouslygo back amd read all I've missed....busy weekend..Kids activities don't stop for tired mom!
Anyway...anyone think it is odd amd worth a mention to MO that I got my period AGAIN one week early afternoon 2nd infusion. Itsi lighter but had one 3 weeks ago that ran longer now get lighter one too early. I thought chemo supposed to halt your period??
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Imen I am so with you on that... I got my second period last week and found it quite strange..b/c I thought the same thing that chemo stops the period.... I am definitely gonna ask my MO on Friday when I go for my treatment.
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I got mine too shortly after chemo#2 and hoping that will be the end of it for a while. I did ask the new MO about it - and she said I probably won't have anymore and when I am all done with chemo we can discuss getting my ovaries out, if my periods come back.
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I've had three periods this month.....for about 3 days each. When my platlet count was low it was kinda heavy for those couple of days. Strange and surprising.mm
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