Starting Chemo April 2016
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Hi yes Anniekaja11 I took a Claritin day before and continued for 5 days along with eupatorium perfoliatum 4 times a day. This morning the pain is all gone. Up until yesterday night still had a sore lower back. Wow it feels good to feel normal again for a little while!!!
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Katjadmv: I eat broccoli sprouts every day in a smoothie. They are so easy to do! I have three medium mason jars that I put 1 1/2 tablespoons of sprouts in. The first cycle is a soak, overnight. Then you drain and just rinse twice a day. Don't worry if you see tiny white things that look like mold. They are just baby roots looking for moisture. I learned this the hard way. Threw out batches of sprouts until I figured it out!
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Ok...reluctant to bring this up here, but as it is legal in California and many other states, is anyone using medical cannabis? I just want to throw it out there. I have an incredible former oncology nurse that is managing my care on that front. It is HIGHLY targeted. I have a cream that I put on my wrist that gets rid of nausea almost immediately. I haven't had to use any of the medications that I was sent home with. And then the medications to counteract the side effects of those medicines! It is honestly a miracle.
Many of the products are CBD oil based and have no THC so they don't affect your mental state at all. I wish there could be more of a dialogue on this as it is a highly positive thing.
It is important to note, these are prescribed. I do not recommend trying to find things on your own. But if you are in a state where it is legal, find a really good, qualified nurse that can help.
I had a girlfriend who switched to medical cannabis from all the anti-nausea, etc., drugs. She said she felt like she got her life back. All I know is that I am doing really well with treatment. And when I hit a snag, mc is SO helpful.
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Numb - Good thinking and really good knowing yourself and your body. You have a bunch of us thinking the same thing and I'm going ask my MO about it. I'm going to pay more attention to the shift between day 2 today when I am taking AM and PM doses and then tomorrow and day 4 (last time was my really bad day). I've been thinking about this issue and I feel for all the women who came before us who suffered so much before they started managing the SE. As for me, Day 2 off Round 2, I am sporting that steroid rosy glow. I feel good today, a little bit plugged but it came out and my stomach is doing well. Going to keep up the bland food and the protocol. How are you feeling? How are you doing with your hairless and your new wig? Did it feel good to finally make the transition? I'm still cold capping, shedding like crazy with a bald spot on top but from the front, I look fine...I'm thinking anyways
Hoping for a good day for everyone.
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Susan I have been trying to figure out how to get into Cannabis Oil. From everything I have researched it sounds amazing.
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SusanBP - don't be shy about bringing up ANY topic. Sheesh, we talk about bowel movements here.
That said, I wish I could benefit from MC here in TX, but it is not to be. Christine7 - I'm not completely sure about his, but my doc implied that the downside to the on-body-Nuelasta is that you get a full dose. When others go into their doctor's office for the shot, it is modified to their weight and such. That's not an option for some reason with the injector. And I don't know what that full dose is calibrated to either - a 250 lb man, perhaps? So the SE can be worse.
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Hi Bagger, that is very interesting. I go for round 2 on May 21st and that is going to be the first question I ask. I had to have the on body since I am 1 1/2 hours from CTCA in Philly where I'm treated. And I weigh 114 pounds lol
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ANNIEKAJA - I am not on the same chemo as you are so I hope that your round 2 is better than mine. I got round 2 a week ago and the first few days were fine, but come day 6 I crashed bigtime. It is day 9 now and I am only starting to feel a bit normal again. I don't know whether coming off the steroids played a big part or not or if it is just what chemo does to you. I thought I would do better but the only thing I did better on is my mouth, and that is because I only rinse it twice a day and not 4 times. I had different issues on round one but I got over them quicker.
It doesn't bear thinking about what women went through on chemo before they had the anti nausea drugs we have today. So do you reckon that bland food is best? I can eat what I like and enjoy it but anything too sweet would give me diarrhoea. My head is a disgrace, I have bits of hair on it that I haven't shaved off but it is a yucky orangey colour having faded up since I last coloured it, so I don't know maybe a bald head would be better. I have to wear the wig now and thank God for it, I might be wearing a wig for the rest of my life because my own hair never looked this good. Sorry to hear you are shedding even though you are cold capping. Is it worth it in that case ?
Hoping for a better week next week.
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Numb - I am dealing with that as well. I'm doing better today - day 10 - but this one has been tough. Not with nausea, but with fatigue and no desire to eat. The only thing that tasted good on Wednesday was pretzels. I never eat pretzels and I don't usually have them in the house, but my ex mother in law (Anna's grandmother) sent me a bunch of pretzels from PA where they live. But the AC is supposed to be one of the toughest chemo combos and we're getting it dose dense. It's not surprising that we are feeling icky from this stuff. You're half way, and I have one more. We can do this. My hair is pretty much gone, but I haven't done the ole razor to the head yet, so looking into the mirror is a bit shocking.
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Numb, I think there is a definite co- relation between the steroids and a crash after one comes off them. I take demx - 4 mg ( not 8) twice a day, day before , 2 days after and morning of 3rd day. My nurse and MO told me day 3 evening to to day 5 are toughest and I am guessing it is due to the steroid effect coming off.
Do consider Ice in the mouth during tax. Ac etc does make a big difference. I noticed it between the first and the second round.
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CJSHARMA - I had missed you from the forum and I was beginning to think you weren't doing well but was too afraid to ask. I had read before that round 3 can be the worst and to be honest with you I am already dreading it. It must be very tough on you knowing that you have another round on Thursday ? but at least it will be your last AC and that will be a blessing. I just hope I can manage round 3 if it is worse than round 2. I don't like to be negative but no point in pretending either.
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POSITIVE POWER - I don't understand why if going off the steroids suddenly causes this terrible crash why we can't be weaned off them to make things much easier. My MO seems to think that 3 days on steroids doesn't warrant a weaning off period but as far as I am concerned it does. I am definitely going to ask to be weaned off them next time even if it means I am on them longer in the process. Of course I am sure that the chemo also plays a big part in us feeling unwell but anything that eases it would be welcome.
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Numb- I will check with my MO as well at the next infusion. I am on 4x3 weeks thp and then will do AC x4 after ( so the opposite of your cycle)
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cjsharma I just finished my third dose of AC and it has been much better than the other two because I am going in for a liter of fluids the two days after and also got a liter the day of. Fluids seem to make me feel a lot better and I don't have to take as many anti nausea meds. The biggest positive is that the dreaded brain fog has not hit this time. I don't even know if medical marijuana is legal in maine. Will look into. Happy mothers day tomorrow everyone.
I almost forgot. Had my husband take a razor to my head. feels much better. the stubble was very itchy.
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Susan, I am trying it this round. The first round I did with the meds they perscribed. This time I am going to introduce it. There is a doctor in my practice that perscribes it. He gave me one for pain, one for naseau and one for "mood". I can mix and match them as I want. I didn't want to do anything off the street because I didn't know what strain they were or if they were laced with anything. I tried out the naseau one and pain one this weekend (one yesterday and one today) to ensure i didn't have any wierd side effects. I wasn't nauceous or in pain so i can't say if it worked or not but no side effect. Going to try "happy" for mothers day.
I start cycle two on Monday so Ill keep you posted.
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Numb - I'm okay. Not going anywhere.
Just kind of depressed. I'll get over this too. Thanks for worrying. Kat - Interesting. I'll ask about that. My first two rounds were pretty easy - just a day and a half where I felt bad, and the rest as fine. I was just surprised this one hit me this hard.
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Hi all - I had a good day today, day 2 off Round 2 but looking back in my journal, for Round 1, the stuff didn't really come on hard until day 3 night/day 4...same timing with the steroids coming off. I'm going to write my ND to get a prescript for cannabis oil Monday. We went to look at interior design choices for our new house which was really fun, very nice options and they are not trying to cut corners which was a relief. I get to be the 3rd vote on it all with my and my hubby, so I'm excited to have this pleasant distraction. We then went up to Semiahmoo, has to be the most beautiful beach I've ever seen (north of Bellingham, near Canada). its a vast beach with beach logs and sand up top, a long expanse of mud flats, eel grass and shallow waters and then the waves coming in. My dog, she is blind, just wandered and wandered and laid down in the shallow waters. There were so many birds - two species of sandpipers, Osprey, eagle, herons and seagulls. The gulls would get clams and then drop them on the rocks to break them open. The entire area just felt so clean and healing. I walked around the mud in my barefoot and through the water, just soaking it up into my body.
I think the TC+H protocol must be easier than what so many of you are going through with the AC. But its all so variable and complex. Let's just hang in together, talking about whatever each of us needs. Look, in a year - it'll be like a reunion!
Numb – I'm so sorry that you are having a rough go. Some regime changes are in order perhaps, with longer use of the steroids or tapering like you think, and possibly medical marijuana? Can you get that? I might give that a try, I live in Washington state and my Naturopathic doctor would right a prescription so I get the right mix. Oh, I just wish I could wave this suffering away for you and I wish I could say just the right thing to make you feel better. But really, its just a trudge through time. The deal with our hair is just not fair. For me the cold capping, is going fine for now, but it will really be the test of time. All the women are shedding, with some regimes their hair is changing texture and color, some are getting a ton of shedding and thinning. I have a lot of thinning on top with a small bald spot but right now its easy to hide. I'm thinking today I might end up so thin on top I wear a cap and I'll have a natural halo….But we'll see. I've heard too that . I did read on the cold capping group that the cold capping increases the rate that your hair grows back, it grows back in half the time. That's not official data but some women started cold capping after they lost their hair and it still helped with the regrowth. Its really a shame that the medical community is not pushing this research and heading this reform to make this available to women easily. I feel very passionate about this.
CJ darling, same to you. I'm sorry to see you suffering too, I have the same feeling for you as I expressed for Numb. I'm so glad that you have one more round of the AC, it's a tough one.
Bagger – good to see you, how are you doing? Where are you in your protocol? I just finished Round 2 TC+H. Hoping to hear on my Perjeeta appeal this week. I might get that from the drug manufacturing if the insurance company doesn't do it.
SusanBp and others – thanks for the information and diaglogue about medical marijuana. They need to get up and running with this option too.
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Christine - My doctor does not require everyone to get the shots - I tried to get out of them but with my treatment every 2 weeks he said I have to have them however I know one of his pother patients who has her chemo on an every 3 week cycle and sheonly has to get them if her counts start to drop. I don't have terrible side effects from mine - yes some aching and mine doesn't really start aching til about day 7
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Ladies - I don't think we all answered some things about ourselves in the beginning but as I read our posts I wonder where are they located, how old some of you are and such so I put some questions below and answered and hoped maybe each of you would so we can learn more about each other (beyond just the treatment). Add a question or 2 also if you want. The steroid posts I take only on day 2 and 3 in the am and pm and I don't really see any issues.
Name - Lisa
Age - 42
What chemo cycle are you on: 3rd cycle on Wednesday
Do you have children: daughter 10 , son 8, son 6
Location: south of st louis Missouri
Hardest thing for you so far: My port I hate it - its uncomfortable and horrible
Hats or Wig: Hats only
Current hair status: lost all my hair - still have eyebrows
Favorite quote/advice/song: I love the Casting Crowns song Just be Held - there is a section that talks about just when we think our world is falling apart that it is falling into place between my marriage being over and then finding out I had cancer well I could of sat and sulked but I have been doing so well because I feel like so many things are going right for me. Here is the link to the song if you want to check it out.
https://www.youtube.com/watch?v=tIZitK6_IMQ
Post a before or now picture of you if you want.
This is me and my kids just prior to me chopping off 8 inches of hair and starting my treatment
This is me just prior to my last treatment
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CJ sorry to hear you are having a tough time. Its ok to get depressed once in a while and I am sure you will bounce back with your cheerful spirit and very positive attitude, in your case you are 75% done with the with the toughest chemo cycle and only one more to go.
Numb , do ask your MO on the strong 8 mg demx steroid as well, I agree if we have a crash after 4 mg then double the dose would cause a bigger issue.
On an emotional level hang in there, its tough but has an end date, and, it may be a while away but every day we move towards the day this ordeal will get over.
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I'll play! Thanks Lisa!
Name - Christine
Age - 51
What chemo cycle are you on: 4th and FINAL AC on Thursday - YAY!
Do you have children: daughter 23
Location: San Jose
Hardest thing for you so far: 3rd week and fatigue.
Hats or Wig: Both and combo - I'm having fun playing
Current hair status: lost all my hair - still have eyebrows and eyelashes
Favorite quote/advice/song: my all time favorite quote is from Teddy Roosevelt: It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.
This is my daughter and me on her graduation cum laude from UC Davis. So proud,
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Anniekaja11: What a beautiful note. I am so glad you had a good day. I am 3 days past my second taxol/herceptin/perjeta infusion. I am actually doing quite well. I have my moments and am already understanding the fatigue part of this. Saturdays seem to be my hump day. It's my trickiest day and then Sunday, Monday and Tuesday are good.
I am doing my a/c after the first 12 weeks of t/h/p. Not looking forward to it but as it is at the end (4 treatments over 8 weeks) it might be mentally easier. I know so many people here are having a lot of trouble with it.
I am also cold capping. It's interesting. Another piece of stress added on one hand...wondering how your hair is going to tolerate it, will you have any hair left, is it worth it? I feel strongly about it, too. Even though it adds a lot of time and discomfort to treatment day, I am hoping that I keep most of my hair. I am on day 11 and no shedding yet. I had a girlfriend who did the cold capping and didn't shed at all!
As far as the medical cannibus goes, I have a bunch of different products for different things. I have a "vape pen" which I call my "puffer pen" because I just can't bring myself to admit I am "vaping", lol. I have three different cartridges. One is for stress...it is CBD. Works like a dream. The second is for nausea and the third is for sleep. I also have a couple of oils. Cbd and THCa (only a few drops to fight neuropathy) and also a cream that I can put on my wrist that takes nausea away in about a minute. They have all been lifesavers. I haven't used ANY of the meds that I was sent home with. And no side effects. I would suggest asking for specific targeted products.
To all the mom's here...Happy Mother's Day. Have a beautiful Sunday
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Hello Everyone. I haven't posted in awhile as I ended up very sick after my first round of TCHP. My white count bottomed out so low that I am now getting neulasta shots after chemo! My MO told me that only about 10% of people have their WBC count drop after this course of treatment and I am in that lucky 10%! I am doing my neulasta shot at home. My MO did not want me wearing the self injector as it has a 20% fail rate, meaning the medicine doesn't inject itself. Since I am a RN, I was very open to doing my shot at home myself after chemo. I live 1.5 hours from my infusion center so going back the next day just isn't feasible. I took 4mg of dexamethasone twice a day after my first round of chemo for 3 days and felt like I was going to jump out of my skin! Now I am taking only 4mg one time a day for 1-2 days after chemo and that is so much better for me. All of my hair is gone so I am wearing scarves, hats, wigs and my bald head!! I wish al of you the best as you face upcoming chemo days and I also hope all of you have a happy Mother's Day!!!!!
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KATJADVM - Oh, thank you for posting that you found round 3 of AC better than the other two. This gives me hope. What are the fluids you are getting, just water or what ? . I think I will have to cut the remainder of my hair too as it adds to my disgust when I look in the mirror. Happy Mother's Day to you too
ANNIEKAJA - I would not think that I could ask for medical marijuana here in Ireland. I am definitely feeling much better today though and I am grateful for this.
CREATEYOUROWNSUNSHINE - that's interesting that you only get your side effects from Neulasta on day 7. I stopped taking the Claritin on day 5 thinking I was past getting any side effects at that stage. Gorgeous photo of your family and my you did have such lovely hair.
POSITIVE POWER - definitely going to enquire about tapering off the steroids.
CJSHARMA - gorgeous photo of you and your daughter. wishing you all the best for round 4, it is a comfort to know it is the last AC
LACROSSEMOM - sorry to hear you were very sick after the first round. I had the same issue with my white cells and was hospitalized for 3 nights. So, like you, I am getting the neulasta shot after chemo in the future. I have already had one shot with no side effects. I am also doing the shot myself at home. Now you are another person questioning the steroids. So it was okay for you to reduce your steroids to 4mg a day after chemo, that's very interesting. I am definitely going to make a change for the next round. Thank you for posting that. Happy Mother's Day to you too.
Happy Mother's Day to all of you. Hope you are all spoiled today.
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Happy Mothers Day to all the mums today. Hope you are all well and truly spoiled
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Hi there. Any tips for indigestion? Seem to have it often. Anything natural I might take?
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Can't believe how awesome that vape pen sounds, and yet I can't have it here in TX. Feeling a bit angry about that. Okay, more than a bit.
Only 10% on TCHP need Nuelasta - that seems low based on this board. We all seem to need it. Has anyone not needed it?
Name - Barbara
Age - 51
What chemo cycle are you on: 3rd cycle of every three weeks on Friday April 13.
Do you have children: daughter 19, son 17
Location: downtown Austin TX
Hardest thing for you so far: Taste of metal in my mouth and no taste buds
Hats or Wig: Hats only
Current hair status: have thinned sides and back, some bald patches on top.
Favorite quote/advice/song: On long bus rides to a Girl Scout outing, we would do this call/response chant entitled: Going on a Lion Hunt. The part that comes to mind is:
Coming to some GRASS (though I substitute "Chemo")
Can't go over it!
Can't go under it!
Can't go around it!
Guess I'll GO THROUGH it.
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<I'll play....morning of Day 3, feeling a little bit down and silly about it because its about my new bald spotted how much my hair is shedding with the cold caps>
Name - Annie
Age - 58
What chemo cycle are you on: TC+H, hoping to get Perjeeta. Day 3 post Round 2. 6 rounds, every three weeks.
Do you have children: daughter 29 who is 9 weeks pregnant just about to finish her MS in Biology, son 27, US Coast Guard, Marine Pollution Division and heading to Office Candidate Training! Wahoo.
Location: Bellingham Washington. Pics are from when I lived in North Central Florida for 3 years.
Hardest thing for you so far: The FEAR and anxiety at the beginning, dread chemo terrors prior to the start.
Hats or Wig: Cold capping but I'll be adding hats, and maybe need something on top, we'll see how it goes this month.
Current hair status: Hair looks fine from the front and back but not so great from the top, have a growing bald spot and thinning hair on top. Gonna go scarf and hat shopping today. I'm also ordering a product called Topicks which some of the gals that are cold capping are using to help 'fill in.'
Favorite quote/advice/song: Trudging the happy road of destiny.
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I´ll play too:
Name - Sandra
Age - 46
What chemo cycle are you on: TC x4, every 3 weeks, next one is may 19
Do you have children: son 13, twin girls 11
Location: Mexico City
Hardest thing for you so far: depression
Hats or Wig: cold capping, but are now using scarfs to hide bald spots on top
Current hair status: troll/stray dog, but still have hair. still have eyebrows and lashes
Favorite quote/advice/song: at the moment I have this quote by Churchill stuck in my head: if you are going thru hell, keep going
Happy mothers day to everyone who celebrate it today!
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numb: I have been getting a liter of normal saline. Seems to get rid of that nasty chemical feeling that makes me feel so off. still have some fatigue but not nearly as bad as the first round.
name: Kelly
age:45
children: three girls, 6,2,2
location: beautiful Maine
chemo: neoadjuvant just finished round three of four AC and have 4 Taxol to go before surgery
hair: shaved my head the night of my first chemo treatment. dyed it purple and blue for a couple of days first. Now I have a cleanly shaved head thanks to my husband. I only wear hats when I am cold. no wigs, just wouldn't feel like me. And besides as a veterinarian, I know some dog would lick it off my head during an appointment.
favorite quote: say gentle words for who can tell the blessings they impart. how oft they fall as manna on some nigh fainting heart.
biggest struggle: lack of energy to help take care of our three incredibly energetic girls.
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