Anyone Starting Chemo in June 2016

Anonymous

Anonymous

Coffeelover, That is great that you have got one under your belt now. One down and how many left? I tick them off on a calendar. With a huge pink glittery pen! You are like me. I got about 3 hours and then all of a sudden I felt sickly and went to bed, then up and down to bathroom trying to be sick. In order to feel sick, I thought of vile things like fried food and bizarrely enough the ginger sweets I had bought to suck on to make me NOT feel sick hah! The minute I thought of those sweets I said hello to lunch again. I do believe that if you are sick, you immediately feel better again. I was up, off bathroom floor, cleaning my face, brushing teeth and making a cup of tea. It is very strange indeed. The pattern that is set these next few days is apparently the pattern your body will follow for all the rest. That is why you need to write down all symptoms and times that they happen and what you did and with what effect etc. That means you will know what is coming next infusion time.

Not so good to hear that you are back in hospital though. I do hope they get you sorted out and back home as quickly as possible. In this country it is never too good to hang about the hospitals for too long especially when you are sick!

But hey...THAT IS ONE CHEMO DONE! That is absolutely marvellous, don't you think?

Dolly

Moondust

Coffee-lover, was this your first treatment? How often will you get them? Glad you are past the very worst of it, and I hope it gets better quickly!

Keely, your hats are very cute! You look good in them, and the free wig too! And that baby is adorable! So happy and beautiful!

Dolly, I'm not fond of any gym exercise referred to as "cardio" such as treadmill, elliptical, stationary bike, etc. But I do like just plain walking and hiking, and that's what I do most. In fact one thing on my bucket list is to have a walking vacation in Scotland! I've almost got my passport application completed! I make myself do just a bit of resistance training with weights so that my muscles don't vanish over time.

Dolly, I just read your new post. Did you have Zofran or other meds to take for nausea? Did you take them and did they work?

Anonymous

So THIS is my attempt at a fake eyebrow. Sooooooo easy ladies and pic does not do it justice. It actually looks better than my old ones!

Anonymous

Moondust,

I refused steroids other than the one in the infusion as they refused to let me not have that one. For home I was given three different tablets:

Buccasten, Granisteron and metoclopramide.

I barely used them though. I think I used the Granisteron and Metoclopramide on first morning after infusion and then a buccasten later on in evening and that was it. I was also given steroids INCASE ....but I was absolutley NOT having them as they bump my sugar levels up to horrible levels that make me feel sick and unwell.

I feel lucky that I got away with so little medication. Hope it is same next Friday!

Dolly

Coffee-lover

moondust - this was my first treatment. I have 3 more AC treatments (every other week) then 12 paclitaxil (weekly). The actual mechanics of getting it (going thru the port, the taste when they cleaned it and all of the meds) was pretty straightforward. No complaints. The ickies happened a few hours later.

I have four antinausea meds coursing thru my bod and still feel like I could throw up. But wayyy better than yesterday. Two of them are steroids. I don't like them but if they're helping I'll do it.

As for the neulasta, I was supposed to get the little thingy on my arm but instead they wanted me to come in for fluids. I think the doc saw that I would struggle. So I get a saline infusion as well as the neulasta. All is good so far. I'm going to continue to take it easy tonight, watch soccer and basketball and doze in my chair.

Arizonahiker53

I just finished my last ( 4th) round of chemo a few days ago. I had each round every 3 weeks. As stated in many of the comments, overall it was not as bad as I thought it was going to be. I lost my hair two weeks after the first round and had a friend shave my head. I bought a wig a head from a place near my house and several fashionable caps from "TheCURE" website ( very affordable and merchandise comes very quickly ) . I had left masectomy in February and another surgery to remove one node that was positive so did not have to do radiation.

I continued to exercise ( active hiker in AZ) as much as I could throughout my treatments as not only did it pick me up mentally, but also helped me ward off any side effects. .

Allow yourself to rest when you need to. I usually felt "a little crummy " the 3rd and 4th day after chemo where I wanted to sleep all the time and had no appetite . I never got nauseas but did take the anti nausea meds they gave me ahead of time to
get ahead of any nausea I might experience. I also lost my voice a bit by the 5th and 6th day but had my energy back by then. I plan to do reconstruction later in the year ( heck might as well as already met my insurance deductible ) and am taking Tomoxifen now. But plan to take some time off work this summer and travel overseas and put these last six months into perspective. I need to see my oncologist every 3 months and I think she wants me to continue to have blood tests to see if I have any cancer markers but have read reports that say that really isn't necessary and just creates potential unnecessary angst. Plus am really sick of having blood tests . I did have a CET scan and that was clear . Anybody else have any opinion on the blood tests?

I also plan to cut back on my wine intake( from 2 to 1 glass a day) and eat more fruits and vegetables and protein throughout the day. As in the past I had a tendency to not eat most of the day as was busy with work and did not think about it.

Kristi . DX - Jan 2016 1.2 cm - ER+/PR+-HER2-
Surgery Feb 2016 ( left masectomy - even though my surgeon recommended lumpectomy) . I have always been small chested and knew the lumpectomy would alter the limited breast tissue I had left so decided to have masectomy,.
Surgery : March 2016- removal of 5 nodes- 1 positive ( not discovered until after Sentinel node dissection results came back )
Chemo: Taxotere and Cytoxan - 4 rounds

.

Post a reply

Moondust

Hi Kristi! Thanks for posting your chemo experience. I'm a hiker too, in California. I plan to hike once a week, at least a short one, throughout my treatment.

The question (and problem) with the tumor marker tests is what will be done if they are elevated? If your scan was clear, then any tumor will probably not be detectable by a scan at this point. So you just sit and worry and wait for the next marker test. And the markers can be elevated for other reasons too as I understand. If there was some action they could take if your markers are elevated, then I would understand the point of the tests. But if the plan is to do nothing, then I'd rather not get them. Please ask about that.

Arizonahiker53

Thank you for your note back Moondust -- I appreciate your input- I plan to email my oncologist about my questions as don't want to live in constant fear due to elevated blood markers and constant scans if no need- question, why are they starting your chemo so long after your surgery. I hope you tolerate it as well as I did and yes , keep hiking, it helps!

Kristi

krekre

Labscientist -- I'll echo your BOO about missing work. I start Chemo on Monday and am hoping hoping hoping that I'll be able to continue working full-ish time. On another note, please forgive me if I missed it, are you icing your hands and feet? Or doing the nail polish thing? I'm wondering because you mentioned about your toe.

Cofee-Lover --your vodka comment really cracked me up. I'm a wine drinker myself and have cut back but not out. I should stop, I think, but I'm waiting til the last possible minute and just drinking more and more water.

Dolly - and everyone else who posted -- thanks for posting the pics of hats and stuff. I just ordered a bunch today with a little less trepidation now that I've seen your pics.

labscientistmom

Coffee-lover: maybe try some aloe vera juice for the nausea? It helps with reflux really well, just a couple mouthfuls, cause honestly it tastes vile. So sorry that you are so sick, Glad they gave you fluids with your neulasta - my husband the history teacher and I were talking about chemo today, and it really is a war of attrition. We have to outlast the enemy (cancer) and survivie the bombardment! Support and keeping the troops healthy are sooo important.

Dolly: great job on the eyebrow, I think you nailed it!

blessings to you, A

Moondust

ArizonaHiker, my MO originally used an online tool to tell me I had only a 7% chance of recurrence without chemo. So I started radiation, at the same time doing more research, and within the first week of radiation I knew she was wrong and my chance of recurrence was much higher based on my Oncotype score. My RO said no problem, I could have chemo as soon as rads were done, which would have been the beginning of April. Then I had to wait 2 weeks to see the MO. Then she pulled a fast one and said she wanted me to get a second opinion before she would give me chemo. So I went to UCSF, which was also delayed because somehow the paperwork was not sent to the correct place. The doctor at UCSF confirmed what I had already figured out -- without chemo I had a 14 to 20% chance of recurrence and with chemo it dropped to 7 to 10%. My young MO was really pissed that the 2nd opinion agreed with me. If it was not for the potential of further delay I would have switched MO's but I didn't want to take a chance. The nurses at the infusion center are very nice and competent, so I'll just stay where I'm at for my treatment.

labscientistmom

krekre: yes I am icing after I forgot the first time and the evening of first infusion my fingers suddenly started hurting as if I had slammed both hands in a door. Its keeping the neuropathy mild, which I can live with. I ordered some hats and a couple bandanas too, have tried them on a couple times. i want to get a chemobeanie (check out their website) but I am going to a nearby business that's supposed to carry them to see if I can try one on before ordering. I also got a free wig from ACS, gonna take it to be styled when my hair is finally gone. I got a halo wig too that makes me happier about the hats.

yes I am using the Avoplex oil on my fingernails. gonna get some tea tree oil (cause I can't find the bottle I know that I had!) to put on my toe, Dollydimple suggested it to save the nail.

Still ambivalent about missing work - miss doing it, don't really miss getting sick from being there which seemed to happen on a regular basis. At this point, disability has me off officially until end of July. Then have to get my MO to send in more paperwork if I am ok to return intermittantly or with restrictions. maybe I can do that to start and help on the every 3rd weekend I usually work, cause they are short then in the blood bank. Gotta negotiate with the Dr's though. And see my war of attrition comment above, I do see the wisdom of keeping myself healthy and strong to get through this as my primary "job" right now.

thanks for listening to me natter on. A

Anonymous

Labscientist, ask your husband about how cancer had its beginnings in World War II. Two Americans called Gilman and Goodman's discovered that during the war, soldiers who were in contact with mustard gas in the trenches had significantly smaller numbers of white blood cell counts. Knowing this, thy then went on to investigate further and see if mustard gas could then reduce the growth of other fast producing cells such as cancer cells. This was the start of cancer treatment with cytotoxix treatments! So it all started with mustard gas!!!! Thanks about the eyebrow, but it can be improved lots yet. I will have another go when my makeup things arrive from Amazon. I do not think you should be too annoyed about not being at work and as you say, just use this time to get well again and rest your body, which is taking a hard hit right now.

Moondust, I am annoyed that we don't use these Oncotype tests over here. Well according to my doctor, we don't use them in Scotland but some areas in England do. When I asked about it my doctor said they don't hold much confidence in them and prefer to back everyone up with 'belt and braces' and make sure they are all given treatment as additional. However, I have been reading up on this and it seems to me that if such an amazing test exists then it could and should be used on every single individual, in order to make sure they are not being over treated or indeed in one paper it was suggested that some women were being under treated without the use of this test!!! I thought maybe it might be the cost...but then they do seem on NHS to be giving a lot of people chemotherapy as back up! So not too sure why this test is not used, other than maybe they genuinely don't like a test making a medical decision for them? At any rate, I thank the heavens every day that I have the use of my wonderful NHS right now. I have had superb care so far.

I am gearing myself up for a week today. This time next week I will be weeping at the thought of my cold capping and the 6 hours in hospital. I hate those trips. I am OK afterwards but in general cannot be bothered with the time it all takes. I am going to read a good book next week and watch TV.

I am also losing hair...Labscientist and Moondust, it is not coming off head yet! But is coming off in those other interesting places we discussed, which does not bother me but I suppose still sort of shocked me as it was the sign now that this hair thing is going to get started in next couple of days and is going to be a tad upsetting.

Hope everyone is doing well and winning!

Dolly

bab524

Hi all! I had my first of four cycles of chemo yesterday. I am doing Taxotere and Cytoxan. I am doing the Penguin Cold Caps so it was a long day but overall not too bad. I did have a weird reaction to IV Benadryl which they gave to help me relax with the cold capping, it gave me restless leg syndrome in my legs and even in my arms some? Not painful just very uncomfortable and annoying. My nurse was so great though and upped my Ativan to help me sleep, so I was able to sleep the entire time except when my family woke me up to change my cold caps.

Going today to get my Neulasta shot and have started Claritin already to hopefully keep the bone pain away.

Being only 1 day post chemo I feel fine, just tired from the long day, but I am sort of just waiting around for the side effects to kick in. The anticipation is the worst part!

My main goal during this stupid chemo treatment is to try to maintain my normal lifestyle as much as I can. After my bilateral mastectomy I was too tired and sore to do much of anything, but I finally got used to the expanders and felt normal. I had another setback from my egg retrieval that did not go well, so I was out for a while after that on 7th. But now that I am feeling normal *again* I want to stay social, active, and as much as myself as possible (without overdoing it of course). It has been easy for me so far to tell people I am too tired or sick to go out and see them but I think now I need to push myself to be more social and take care of my mental state.

Good luck to everyone!

ClarkBlue

The interesting thing and from what I know about the Oncotype tests - it's really a timing thing. Do it too early before confirmation of whether or not it's in lymph nodes, then you've wasted money on a very expensive test.

I believe the use of the Oncotype test is mainly to help decide whether or not chemo should be used for recurrence preventative treatment for cases of early stage, non-lymph node involvement ONLY. If it's already in the lymph nodes, chemo is a given regardless of the size, grade, or receptors. Is there another use of the test??? It's used to help determine whether chemo is needed in borderline cases, right???

So I suppose I am wondering why an Oncotype would be ordered for anyone prior to any type of surgery (lumpectomy or mastectomy) and prior to the final surgical path reports come back confirming lymph node involvement. It seems like anything prior to that would be a waste??

Am I completely off on this, or forgetting a segment of the population - I do kind of still have chemo brain you know... LOL

-Keely

ClarkBlue

Bab524 - most of us on TC have found that SEs kick in on days 3-5 (treatment day being day 1). Be sure to have some Alleve (generic is Naproxsen) on hand to help with bone pain (take 2 for the first dose). You'll be in kind of a "fog" for those days, but just eat bland, drink LOT'S, and care for your mouth and you should be okay... Get out and walk when you can - it helps!!!

And don't hesitate to call your MO if SEs do become troublesome.

ONE DOWN BABY!!!!
-Keely

KNardo88

Just throwing in my 2cents on the Oncotype test! I did not have it, even though I fit the criteria to be able to get it. My MO said that regardless of what the score was, he would still recommend the chemo for me so it wasn't necessary to send for it... Unless I insisted. I almost did, but then I realized that I would have never refused the chemo to begin with, so there really was no point in trying to push for it.

KNardo88

Set out yesterday with my mother on a mission to get my mermaid hair cut, and to find a wig! First stop: chopping off the hair! We were able to donate it :-)

Pardon the exhausted/slightly aggravated expression on my face, and the fact that it's slightly disheveled, but here's the end result:

---

Aaaaand finally, THE WIG:

ClarkBlue

BTW - I bought some Biotin and Keratin supplements yesterday to hopefully aid in hair re-growth... I cleared it with my MO. I did have a hard time finding JUST those supplements - there are a lot of "Hair and nail" vitamins - but they have extra stuff we shouldn't be using until after chemo is over... like Vit A, E, C, etc. So be careful if you start taking them to look for ONLY those 2 ingredients.

Here's to lot's of new hair!! Woo-Hoo!
-Keely

bab524

Thank you ClarkBlue! My nurse suggested starting ASAP with rinsing my mouth out with water/salt/baking soda a few times a day. Have you been doing that from the get-go? I would hate to get mouth sores!

ClarkBlue

bab524 - I did... at least for the first 4 days I rinse my mouth after eating anything. After 4-5 days I am fine just using TheraBreath in the AM and PM after brushing my teeth. I haven't have an issue with sores, but everyone is so different!! You can order it here:
https://www.amazon.com/TheraBreath-Dentist-Recommended-Fresh-Breath/dp/B001ET76AI

Or it's also available at big box pharmacies by the regular mouthwashes. I used 1 bottle through 2 treaments, so 2 bottles should be just enough!

-Keely

Anonymous

Keely, your hair is lovely. The new cut looks great as does the wig!

I am interested to know what your doctor said about taking Biotin. Did you get these in tablets? I bought them a few weeks back but have been too scared to start taking them in case they are going to interfere with the chemo. But they are just a plant extract thing are they not?

My hair is starting to look a tad thinner on top. The parting looks a bit wider. So that being said I am defo doing my big combover now!

My understanding of the Oncotype test is that is CAN be done also on node positives as long as it is no more than three nodes that have cancer cells and as long as it is micrometastases. They sometimes do not give chemo depending on this test result for the 'borederline' cases. I was told I was such a borderline case. In UK however they just zap us all with chemo and to be honest, I sort of prefer to just have the chemo. But it was discussed at great length apparently at the MD meeting about what to do with me as they were origionally thinking no to chemo and then decided yes.

Dolly

DistrictGirl

DollyDimples - my MO advised me to not take Biotin during treatment - it seemed more because it will have no impact during chemo, but she did say it will be very helpful to start once chemo is completed - same with Latisse. I can ask my Naturopath Doctor for her opinion - I'm curious as well (and maybe it's different for cold cappers?). Regardless, I'd still talk to your MO because there may be interactions with your specific chemo regiment/health history.

mccormcindy

i just started AC on the 8th. every 3 week regime. 4 hrs after i got home, i felt like i got hit by a train. non stop violent vomitting. tried to take the compazine and zofran but could never hold the pill down more than 10 minutes. everything came up, even saliva. by the 3rd day even my migraines were out of control. no fluids, no food, so dehydrated and my head had me screaming in pain.

i had thrown up 2 times at my Drs office to get the Neulasta injection....and all the MA would advise was to keep alternating the anti nausea pills.

back to that 3rd day, my 15 yr old son called 911. i was screaming and crying but couldnt talk, my lips were so dry sticking together.

i went to ER by ambulance, and admitted.i was severely ddehydrated, lathargic and easily confused.

given Ativan by ER nurse and got immediate relief from the nausea and vomitting.

she then gave me morphine which took care of the migraine.

i stayed for 4 days. given large bags of fluids on high drip....antibiotics because they said i had a UTI. hell, all that vomitting had me urinating on myself.

they inserted a foley before taking me up to my room.

resident Dr upset that my vomitting was dismissed at my Onc office.....

the staff at my Onc office are so inexperienced and are not nurses.

i am insisting on IV fluids if not a Rx for Ativan, whatever, anything to keep me from going through that much unnecessary hell.

yes, i know, to expect discomfort, but, the resident Dr said that was so wrong and extremely dangerous.

labscientistmom

KNardo88: your expression in the second pic is how I feel about pictures in general, but I like the haircut! and your wig looks awesome.

Dollydimple across the pond and everyone: Here are some pics from me (I Hate taking pictures)

This is me with hair still.

This is the chemo beanie I got. Sorry, don't take selfies, like ever, so was having a bit of difficulty with the show process.

This one came today in the mail from Good Wishes.

And...I got this scarf from zulilly, it just came today too. Obviously, I was done with pictures.

I actually tied this scarf better earlier, but then flaked on taking a picture, sorry about that. maybe when I actually wear it without hair, I will send another. I got some other hats and a cool bandana, but those are for another day.

labscientistmom

McCormCindy: OH no, that's terrible. I am so glad your son called 911 for you, and that now you are getting supportive treatment. Crazy people, not caring for you correctly, my MO says with the drugs now, no one should have to be vomiting anymore. I got the zofran in my premeds before the taxol, and many others on these boards do too, seems weird that they didn't give it to you. Hope you can get it straightened out between your caring doctor and the infusion center (that needs to have nurses at it!) to have much better outcomes the next rounds. I will be praying for your recovery and better SE's from here on out: A

Moondust

KNardo, I think your new length looks good! The wig looks like your own hair too.

LabMom, you look cute in those beanies and scarves! Pictures of you look fine and you have a great smile! I don't know how to tie scarves either.

Mccormcindy, I feel so awful for you about your experience with the nausea. Do they put any anti-nausea medicine in your drip before you got the chemo drugs? I definitely be questioning why this happened, since it is rare for someone to get as sick as you if given the correct drugs.

Dolly, I wonder if the Oncotype will catch on in the UK. Maybe they don't use it because they would have to send the sample overseas. I would have never gotten my chemo if not for my score. Otherwise my tumor looked fairly tame. Well, except for the high Ki67 but my MO kept saying "we don't look at Ki67". I am like you, glad I'm getting the chemo for added safety.

It's been a long day and I'm tired. Tomorrow I'll try to hike a few miles up in the mountains, where it is cooler.

Anonymous

DistrictGirl, Thanks for that info. I go back for next infusion on 24th (YIKES not long) and so I will be sure to ask about all of this. I did look at Latisse products too but thought it was way too expensive for something that might NOT actually work. I bought another cheaper product that seems to say it does the same but I think to be honest it is just conditioning the brows and lashes. Anyhoos, I have decided to just do fake eyelashes and fake brows too. I have read that sometimes cold capping can even help save a wee bit of eyebrow and eyelashes. Not sure why? Maybe it's just because the entire head is soooooo cold brrrrrr.

Mccormcindy that sounds like a pretty major reaction to your chemo. I would be getting in touch with ONC for sure and letting them know that you have been so distressed and uncomfortable and demand to see them. Can they not lower the dose a tad. I had a friend who a few years back was being treated for bowel cancer and she had such a terrible reaction and when she mentioned it to the ONC it turns out they had given her too high a dose! It was reduced and she was fine after that. I am so glad you had your son there to help you and get that call made to A&E. I do know what you mean though about some people in medical profession being matter of fact about the stuff we have to go through. I feel at times like shouting out, 'THIS IS A BIG THING IN MY LIFE!' I do hope you get a few days now to rest and get yourself back to some sort of normality. Get sucking on lemonade ice lollies for hydrating yourself.

Labscientist...As you would all say across the pond...YAYYYYYYYYYYY!!!. You did your selfies!!! You look fabulous my dear friend. I love your scarves, especially the second one in pale blue with the sort of paisley pattern. I love that look. Did you get all of these locally? How much of your head hair has gone now? It is soooo good to see your face! How weird is that but it actually just makes me think of you as a real friend now who I just have not seen for a while. My parting has been getting a bit bigger. Well I think it has, but my mum says it is my imagination. So I have started to wear hair in new parting (Trump parting)....It feels weird but it will have to be done.

Moondust, I am sure at some point this test will become more popular. It is probably to do with overseas and maybe just a negative attitude to it. My parents were even happy to pay for this test to be done and sent over for me. But doctor was pretty much, nope no need, the chemo is best plan of action which I suppose made test unimportant. But it would have been nice to see how likely my recurrence rate might have been. What is Ki67? I keep coming across this and have no clue what it is? I hope you get hiking and get some good mountain air and that it makes you feel great. But, please tell me you are going with somebody. I don't want to hear that crazy lady in bandana has gone missing in mountains and the bears have eaten her. PROMISE you are going with somebody!!!

To ALL FOLKS - my makeup purchases have arrived. I have brow kits, brow templates, eyebrow pencils (keep them in the fridge so they are easier to sharpen and use), brow seal, brushes and fake eyelashes. I am most concerned about how to do eyelashes, but my niece who is 15, was all attitude with me last night and simply shocked that at MY AGE I did not know how to put on fake eyelashes. She is going to show me how to do it. So it is a 15 year old to the rescue!

Dolly

pepper43

Raising my hand! Just got treatment plan from oncologist yesterday. I will start AC therapy this coming Friday (every 2 weeks for 4 treatments), then Taxol every week for 12 weeks. I'm going to donate my hair next week and just get it over with. I'm already emotionally raw enough- no need to add to pile with falling hair.

Edited to add: Will scroll through thread soon so I can get to know everyone. I'm heading out for walk before it gets too hot here in NC.