Starting chemo January 2018
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Hi Amelia
Yes that's the book. I haven't tried many of the recipes, but they seem ok and pretty family friendly.
I think I am going skiing on Sunday, if it's not too cold. I tire easily, and I don't ski much, but I like going. The sunshine, fresh air and having people around do wonders for my morale. Plus I need the exercise. I gained 2 lbs in the three weeks before infusions (likely because of the steroid). The doctor was pleased, I wasn't one bit.
Let me know what you think of the Latisse (or Latisse-like). A friend of mine used it and had amazing, long eyelashes. She swore by it. I have a couple of products I use: Lash Envy and another one for my eyebrows (forgot the name). Somewhat cheaper. I haven't noticed any spectacular results, but so far I haven't lost any lashes and my eyebrows are still there.
Take care!
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garifalia my nurse prescribed Clindamycin Phosphate gel for folliculitis. I had some bumps on the back of my head when my hair started growing back in. You can also use non-prescription benzoyl peroxide acne gel and I've read some women had success with apple cider vinegar.
Paisley2916 I know exactly what you are feeling as the switch to Taxol gets closer. The unknown is the worst but try not to worry too much. I got comfortable during the AC because it became a familiar routine. I knew what to expect and how to deal with it. I was told at the time that Taxol is generally better tolerated than the AC so I shouldn't worry. I did not have severe side effects on the AC. I did have the steroid buzz for the few days after which was then followed by a 12+ hour sleep. I had some bone stiffness from the Neulasta shot but not terrible. It was mostly in my hips/thigh/knees. Walking helps with that. I took Clairitin the day before infusion and a few days after. Not sure if that kept the bone pain to a minimum but it wasn't harming me to take it so I did. I could eat although things tasted "off' so it was hard to finish what was on my plate. I had no mouth sores but did have reflux/hiccup/burps--probably from the steroid. After every sip of something, I would hiccup. Nausea was minimal. I took the meds as a precaution the first day or so and then only if there was twinge of it which was not often in the days after. When I took them, I got constipated. I found Smooth Move tea got things moving. Raisin bran cereal did, too.
Re: Taxol - since I tolerated AC pretty well and they kept saying that was the worst part, of course I figured it would be opposite world for me and I would have horrible side effects on Taxol. Not so. I iced my hands and feet during infusions. I did develop some tingling in my toes and fingers. The 3 middle toes of each foot started to feel like they were fused together like one big tingling toe. It was strange but it did not impact walking. I made sure to be careful whenever getting up from sitting and just made it a point to be aware of my feet before that first step. Happy to report the tingling gradually resolved after I stopped Taxol. I had dose dense so was getting a larger amount than the weekly infusions. I was told they are most concerned about the rare allergic reaction to Taxol which can be scary because you may feel like your heart is racing and you cannot breathe. I was reassured that they are looking for that and will immediately stop the drip, give you benadryl and re-start the drip again at a slower rate. If there is another reaction, you may have to switch to another drug. I'm not telling you this to scare you - just the opposite. It is rare and the nurses are certainly prepared should there be a reaction. The only thing I felt was a slight burning in my nose/sinuses but it was at the very start of the drip and it went away after a few minutes.
I did develop a fever of unknown origin. I had no other symptoms other than a fever. I had a chest xray and blood work that was clear and a few days later a repeat of xray and bloodwork that was also clear. Finally a CT scan revealed that I had pneumonitis (inflammation of the lungs) most likely caused by a bacterial infection. I was given antibiotics and felt better in a day. This was the only 'serious' side effect I encountered.
Fatigue is cumulative. I don't think the AC or the Taxol is worse than the other. I think it's just the combination and length of treatment. It's a long haul not a dash.
Again, try not to worry too much. I knowt that's easier said than done.
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PeachyJeanne and others: I got the Rx clinimycin gel for my follicilitis yesterday and it has helped very much. The pimples on my scalp have tamed down a lot and I feel better. As a bonus I put a little bit in my nostrils for the sores in there and they have gotten better too. Thanks to all for your helpful advice!
My husband is taking me on a mini vacation to a hotel in downtown Minneapolis for a change of scenery. Then my daughter arrives home next week from Maryland to cheer me up.
I'll get my 3rd round on Thursday, then final 4th on March 8. The end is in sight!
Still worried about you @WorriedMe.
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HI all-
Just had second AC dose yesterday. After a really rough time the first weekend (ended up in the ER on an IV after the nausea took hold for almost 48 hrs), we brainstormed a ton of solutions. Never doing that again... Anyway I have been eating non-stop since during the infusion. No major meals, just bits and pieces of good yummy stuff every hour or so: green drink, an Activia yogurt, some soup, a few bites of raw coleslaw, and a good dinner last night of salmon/ wild rice and greens/ salad. I second the recommendation above for the Cancer-Fighting Kitchen- great great book. I can't quite go fully plant-based, and she is very centrist and accomodating. https://www.rebeccakatz.com/the-cancer-fighting-ki... My friend the radiologist with bowel cancer also strongly recommends cannabis, and that works for me, with both body and attitude. Also having some Zofran ODT will help if I can't keep them down.
Last week i went from icky to BAD right at the Neulasta. Guess I better go take a Claritin right now- it's going to start at 6 pm or so. Hard to believe those things cost roughly $6000. I guess they are trying to retrieve some development and research costs, but wow. I hope Blue Cross picks up ALL that bill, but our cancer center pre-authorizes everything. But if that's what made my white blood cells recover- I am all for it.
Anyway I still have all my hair, am going to the gym every other day even though my rate is amazingly high (for me), and I wipe everything off before and after using. Only 2 more AC (dose dense), then on to a 4-session regimen of Taxol, Perjeta, and Herceptin. But that is on a 3-week cycle, so I can actually have a life.
I love reading your stories and advice, everyone. We got this!0 -
Today is the first day I feel like me. I plan to prep and freeze meals over the weekend for my next round on 2/19. I want to enjoy next week without worrying about treatment.
To everyone who completed a round this week. Way to go. Seeing you take the next step helps me.
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I haven't been posting, but have kept reading here, which is so great. I am only 2 weeks past my first round (docetaxal) and between Tuesday and Thursday this week great gobs of my hair starting coming out! I am envious of those who made passed round 2 before they lost their hair! Anyway, I just shaved it off last night completely. The patchwork approach was too distressing. So, today was my first real wig day - I even wore it to the fitness testing for the Amber Research Study I signed up for. It feels weird, but I think looks quite like my own hair, so I guess I just have to live with that.
I have a question for anyone who has, or considered getting a port. Are you glad you did it - did you have any complications? I have requested this, but I only have 5 treatments left (of 6 total). My hand was bruised for 2 weeks with the first infusion, and I thought to minimize this happening every time and also because my last 3 infusions will include the red devil (epirubicin), it might make the whole thing easier. Also, since I am icing, which is harder with the IV in my hand.
Or - am I asking for trouble and should just accept I'll get a sore hand and get over it?
Thoughts? I'd appreciate some guidance.
Thanks!
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Deaelle, my MO set me up for a port from the get-go. I've always had small, deep, rolling veins, so even getting the blood drawn between treatments is a challenge. I lucked out today when they were able to tap into my "old faithful". It was an extra day for me in advance of my first infusion to go get the port, but when I had my first treatment, it was so quick and easy for the infusion nurse to simply give the area a spray with the cold spray (I also had pretreated the spot w/lidocaine cream), and stick the port spot to dray blood, clean it, and then go through the port for my treatment. When everything is all completed, I'll need another procedure to remove the port, but I'm ok with that. Note: I don't do well with anesthesia, even twilight procedures, but I was totally ok with a local lidocaine anesthesia for the port procedure.
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My veins have always been a nightmare hands down getting a iv or even blood draws are the worst part of me being sick my port has been so amazing 😉 and it was accessed the day after I got it for a scan with contrast. and several more times for various things and today I did my first round of chemo easy peasy I am so glad I got mine makes this so easy and painfree
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I know I’m Not technically in the January because my chemo was delayed and I had to start in February but I feel connected to y’all.. I did round one day easy peasy no bad reactions did have to wait a extra 4 hours bc pharmacy did have meds went in at 8:30am got home at8:00pm. Got this nuestla (spelled wrong) thingy in my abdomen won’t even go into all the what if my anxiety is taking me thru lmao 🤣 I’m fatigued but ok. Will see what the week end brings. Oh and I feel foggy headed. Hope all you ladies are doing well I pray for everyone WE WILL WIN Our Battl
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Worried - You are definitely a January sister. Glad to hear your first infusion went well!
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Shlomit and WorriedMe77: Thanks for your info. I know the ports make the infusions easier, but since it will only be used 5 times I am wondering if the tradeoff of having the insertion procedure and the discomfort (if there is any) of just having this extra thing on my chest is worthwhile for the added convenience. I had hoped it could also be used for blood draws (so several more uses) but the doc is saying "they" don't like to do that - ie, the nurses or whoever. I got the impression actually that it was time management thing more than a real practical reason why they wouldn't do this. Anyway, I am just questioning myself - am I being a prima dona for wanting this!?
Also WorriedMe77, congrats on getting through your first chemo! I've only had one so far and sure was nervous the first round (my next round is in a week). Are you getting docetaxal for the first rounds? Did you remember to ice your hands?
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Hi Everyone, this is the outcome of my little head shaving party. Had such a a fun time. Turned out to be an amazing day. I’m the one on the left and the othertwo are my beautiful sisters
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deaalle I didn’t ice my hands I just couldn’t tolerate it!! I’m anemic and wear a jacket at 65 degrees lol have been that way my whole life I get cold so easy. I drank lots of water ate some snacks sleep and was on my phone..
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k rose 53 😍😍😍😍😍😉😉😉😉 Love it 😍 and best sister ever!!! Y’all rocked ir
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also I know I received all 4 today 3 were 60 minutes and one was 90 minutes
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🤗🤗🤗🤗 Thank you
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insideout2 Nice you to feel your feeling better
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Is there ANYONE on the same chemo regime as me that experienced thinning hair but not complete hair loss??
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WorriedmMe77-way to go getting your first round done. Rest and stay hydrated.
Krose53- Thanks for the post. Love it.
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Deaella, I have port and very glad I have it. I have had no problems with it. They are able to draw blood through it. You do have 5 more treatments. The chemo us very hard on the smaller veins. I am a RN I would recommend a port to my family and friends if they were facing chemo.
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daelle- I have a port, mine was put in under general anesthesia, it’s bothersome at times now that I’m used to it, but it doesn’t hurt. I think it’s just because it’s near where a bra strap should be, so when I wear one, it will irrat times. So easy fix- no bra! But I was disappointed my infusion center won’t normally access it for blood draws, I still have to get blood taken from my arm.
worriedme- glad you’re back home and resting! We can do this!!!
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Krose53, I love your look after your shave party. You have given me the inspiration to do something like that. Today I started losing my hair in big clumps so I am ready to move on and why not have a little fun in the process. Thank you.
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Deaelle, regarding the port -- I *only* have four chemo treatments, but am glad not to have the chemo cocktail messing with my arm veins (or worse, on days when/if they can't get a good stick, from the back of my hand). I have no pain or any other discomfort from the port, even when it's in use. I suspect that its use for the chemo means the treatment goes quicker because it's coming into a larger vein than what's available in my arm. But, as the saying goes, your mileage may vary.
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Deaelle - I think the resistance to drawing blood from a port may be related to the fact that a nurse has to do it, instead of a medical assistant. When i told one of the MAs I wanted my blood draw from my port she got a little snippy and told me a nurse would have to do it, as if i cared. They could have had a dancing monkey do the draw, as long as it was from my port.
I didn't choose a port (though I love it), I was pretty much told I would have to have one. So, as i explained to my oncology nurse, who understood completely, if i am going to have this thing sitting in my chest, they are going to use it for everything possible. That means all my blood draws are done by an RN from my port.
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I did not have a port placed during my first round of ACT chemo. They said because it was dose dense and I was only going to get 8 infusions, I should be ok. Well, towards the end of treatment, my veins were not that great and it always seemed to take a few tries to get the IV set. I got through it.
Now that I'm looking at a year of infusions, I opted for the port. I had mine placed on Jan 18 and was planning on getting my first infusion same day. There was a delay in getting the authorization from insurance, though, so I was pushed out a week. Healing was fine. It takes a little getting used to having this marble-like thing in my chest but I can forget it there. My first infusion using it was Jan 25 and it was so easy. Much nicer to have both arms free from the IV. Recently, it's been just a little itchy but I think that's mostly dry skin from the winter and heat. I have cream to put on before each infusion to numb it though I've heard from some women that they don't even bother with it. It's a quick prick of the skin and done.
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PeachyJeann: Thanks for this - I live in a dry climate so used to the dry skin issue - lots of cream, all the time! I know someone here who got an embolism in her veins, so certainly something to think about. I also thought about how much easier it would be having my hands free during treatment.
Gigicommon - You made me laugh - a dancing monkey indeed! I would certainly prefer the blood draws from the port, but this means I have to get a new requistion from my MO as the standing order is already at the local lab company and I don't have a copy - so I will have to see how amenable he is to doing this (I am expecting resistance!)
Schlomit - Interesting about the faster treatment. I wouldn't have thought of that. Glad to know I am not the only person who wants this even though I don't have a year of treatment or whatever. Do you put Emla cream (numbing cream) on before it is used, or it doesn't really hurt much? Oh, also glad to know the insertion procedure was pretty uneventful overall.
Erob321 - When I go for the procedure I think I will draw on with a pen where my bra strap sits. Hopefully, that way they can place it one side or the other. Thanks for this heads up - helpful!
Krose53 - Such a great photo!! Thanks for sharing that.
I don't quite have the nerve for that yet!LKinKC - My hair starting coming out in clumps on Thursday morning, and by the evening I just shaved it too! I found it more emotional it see this happening than just to get on with it - though I have to admit I did cry when I saw myself with the shaved head. Now, two days into wearing a wig each day, it doesn't bother me so much. This cancer experience sure does ask a lot of us - so much to accommodate to, it seems it never ends sometimes! AND, thanks for backing up my desire/decision to have the port. All this feedback makes me feel like I was not out of line to request this, even though my MO said I didn't need it at all. He said the nurses would "love" my veins. Of course, this doesn't account for my NOT loving that the nurses will love them! And having a bruised hand for 2 weeks is not what I want either.
WorriedMe77 - If you are getting a cocktail and not just docetaxal alone, neuropathy may not be such a risk for you. And I get what you mean about being cold. I found it quite a challenge to have both hands and feet in ice for more than an hour - but I am super keen to avoid neuropathy so it was more important for me to tough that out, especially as this drug is known to cause this fairly often I understand. Hope all is going well for you today!
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Deaelle, yes, I do apply lidocaine cream to the port area just before leaving for the infusion (I live about 10 minutes away) and cover the cream with a small piece of plastic wrap; there's something about covering it that way -- besides protecting it from getting on my clothes -- that makes it more effective. When I got to the infusion facility (same as my MO's office), the nurse doing the blood draw also gave the area a spray with a freezing/numbing substance. The stick didn't feel any worse than a small pin prick. After drawing the blood, the nurse cleaned the tube used to draw the blood, and that was then used to hook up the chemo, so there's no additional stick. Pretty quick 'n easy.
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Thanks Shlomit. I have a bunch of the Emla cream left from the sentinel node mapping procedure before my mx, so this will be a chance to use it up. I remember the plastic then too!
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I didn't get a port and had 8 infusions. Are you at Tom Baker? The chemo nurses are really good there. I'm needle phobic but the port procedure was so hellish for me that I walked out without it. My MO wasn't that fussed about me not getting it and I have no regrets not getting it. Two less procedures I had to deal with
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IntegraGirl: What made the procedure so hellish? It was a Tom Baker chemo suite nurse who suggested I get the port since they will always have to use the same side/hand for the infusions.
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