Anyone Starting Chemo in June 2016

bbbb

This has to be added to the "never said that before list" started by LJ (I think!) Today went down to Florida to pick up my wig and the WHOLE family went along (minus the oldest at college). They all liked the wig and heard the stern warning about exposing the wig to heat as it is synthetic. We left happy and decided to stop to eat in big Jacksonville where it was literally 100 degrees today. As we were walking into the restaurant, my husband suddenly stopped and turned back toward the car saying "I've got to put your mom's hair in the cooler!" I immediately said "Oh, you know that's going on the thread!" Haha - needless to say we had a great day and laughed alot. To top it off the doctor's office called and said my final scan, the PET scan was "NORMAL"!!! That little word, normal, has made all that is coming next week a whole lot easier to handle! Husband will be out of town, he was worried about me going to doctor to get results from all recent tests back by myself. Also know my hair will be gone some time next week and hubby will not be home to help shave head, etc. so NORMAL PET scan makes the rest bearable and puts everything into perspective. Praise the Lord for great timing!

Clark Blue - yes I am on the same treatment you are but I have only completed one infusion. How are your fingernails doing? Have you had any neuropathy?

Dolly - so glad you lunch date is back on - enjoy life!

Pepper - Just read your article and you are spot on! I am telling EVERYONE I meet during this awful journey to GET YOUR MAMMOGRAM. It may not catch every cancer but it can't catch ANY cancer if you don't get it! I shudder to think what would have happened if I had skipped my mammogram back in April. My MO even talked about how crazy the guidelines are!

Knardo - praying for you! I think we have all been there too and we understand!

bbbb

This has to be added to the "never said that before list" started by LJ (I think!) Today went down to Florida to pick up my wig and the WHOLE family went along (minus the oldest at college). They all liked the wig and heard the stern warning about exposing the wig to heat as it is synthetic. We left happy and decided to stop to eat in big Jacksonville where it was 100 degrees today. As we were walking into the restaurant, my husband suddenly stopped and turned back toward the car saying "I've got to put your mom's hair in the cooler!" I immediately said "Oh, you know that's going on the thread!" Haha - needless to say we had a great day and laughed alot. To top it off the doctor's office called and said my final scan, the PET scan was "NORMAL"!!! That little word, normal, has made all that is coming next week a whole lot easier to handle! Husband will be out of town, he was worried about me going to doctor to get results from all recent tests back by myself. Also know my hair will be gone some time next week and hubby will not be home to help shave head, etc. so NORMAL PET scan makes the rest bearable and puts everything into perspective. Praise the Lord for great timing!

Clark Blue - yes I am on the same treatment you are but I have only completed one infusion. How are your fingernails doing? Have you had any neuropathy?

Dolly - so glad you lunch date is back on - enjoy life!

Pepper - Just read your article and you are spot on! I am telling EVERYONE I meet during this awful journey to GET YOUR MAMMOGRAM. It may not catch every cancer but it can't catch ANY cancer if you don't get it! I shudder to think what would have happened if I had skipped my mammogram back in April. My MO even talked about how crazy the guidelines are!

Knardo - praying for you! I think we have all been there too and we understand!

lilyp6

LJ and Moondust: Thank you so much for making that spreadsheet!

lilyp6

Moondust: Your animals are lucky to have you. We did IV fluids for our elderly dog when her kidneys were shutting down, but besides that and giving meds, nothing like what you've got going on.

labscientistmom

Pepper, thanks for the link, looking forward to reading it. Have loved your utube vids, proud of you for being published!!

ClarkBlue: I started mine on 5/24, but doing taxol weekly for longer and then A/C. Re: "accepting" ourselves as fighting cancer/ chemo /cancer patients...I read an interesting article by someone going through chemo that talked about yes, its totally a cultureal thing, supported by Bugs Bunny and Disney of all people. Princesses have long luxurious hair! the bad ladies don't, in fact the witchy evil ones have chemo hair, thin and sticky out - how stupid is that. Also the history of shaming, they would shave a woman's hair publically. I think this leaves a thing we HAVE to mentally overcome. I really struggle with this, to say to myself, it was nice before my hair fell out enough I wanted to cut it to just. "pretend" is the wrong word, but not have to be a cancer patient if I didn't want to. Like going to work after having kids and NOT having to be a mommy. Now, that i cut my hair uberpixie, and I LOATHE short hair, I find myself wanting to focus on being a cancer soldier, we are fighting a war of attrition with chemo, and we are tough, we are stronger than we think and to be accepting of the lost hair because it means the cancer is DYING!! Most of the time it helps. I like the scarves I got, they make me feel confident and pretty and I can go in public and not really think about it. Being able to cover my head, have it not be itchy and sweaty and have girlfriends say, "oh, that's so pretty" helps A LOT. If you arn't laughing you are crying, trying desperately to not let this steal my JOY!

As far as embracing the SEs, sometimes I do ok, othertimes, and I have said this a lot lately, but the nosebleeds and sinus headache are pushing me over the edge a bit, it's like being pecked to death by ducks. Yesterday was such a bummer, I had headache and body aches all day, got 2 nosebleeds, my son & hubby went for a walk since we didn't go to the zoo, and my son wiped out on his scooter, coming home with major bloody knees. I still am having my period, the worst one in a couple years, thhhptd!! and while getting ready for bed, I stepped on a piece of broken plate with bare feet and put a hole in the ball of my foot. bleeding everywhere again, AARRGH! Dolly, I felt like you did, please just stop bleeding. Today WAS better, hoping to go to zoo tomorrow. SOOO, should not complain compaired to some of you, although i am headed for A/C too, so my day may come. OH, wow, I was just up to answer a phone call and had major terrible dizzy spell. Thankfully my son is home and helped me back to the chair. Whew, that was scary.

Moondust: have a wonderful time in the mountians! I agree, find another more experienced and compassionate MO. You deserve better!!

adotson79

Hello All, haven't posted in a while. After my first TX on July 13, (TCHP) and a very rough first week, things started looking up! Had to go in on day 7 and get fluids from being dehydrated... Please, if you are experiencing diarrhea, and have any symptoms of dehydration, (headache, increased HR, dizziness, extreme dry mouth) go in and get fluids immediately! I felt like a new woman afterwards! Also received IV steroids for allergic reaction to immodium.. Prescribed Lomotil which worked like a charm! After that, the rest of my 2nd week and 3rd week went very well! Food was tasting good again, my energy levels were almost back to normal, and my GI probs had been corrected. Did start losing my hair and on day 13, it really started coming out in handfuls! After a little cry, the hubby shaved it off. Bought some really cute hats and scarves and am now feeling good about my appearance!.... Now I'm into my 1st week again after my 2nd TX on July 5th... So far, no GI probs! Just a slight lingering of nausea despite taking my Zofran on schedule. I think what bothers me the most is the fact that I want to eat!!! But everything tastes so bitter, like it's too salty I guess... It's so disappointing to be hungry and want to eat so bad and can't because the taste is horrible... The only thing ive found to work is eating things that have a sweeter taste and nothing savory... That doesnt seem too appealing, but at least I'm able to eat something. Hoping that next week I'll be back to feeling good again! But, I know that it could always be a lot worse so I am very thankful that I haven't experienced any really bad side effects... Only other thing is a terrible case of acne after the first week.. But, after changing my facial cleanser to Cedaphil and buying some Witch Hazel astringent at Walgreens, my face looks great!

Sorry about the long post! Hope everyone is doing well! Only 4 more TX's to go! Then on to surgery!

labscientistmom

bbbb: I had a normal CAT scan too, and yes what an AMAZING relief. All those little aches and pains are just GETTINg OLD, not cancer eating me somewhere else. Hallelujah's with you!!! whoot, whoot!

adotson79: whoot, whoot, getting it done so you can get to surgery!! Huzzah! It was heartbreaking for me to cut my hair, I spent all of JR high growing it long after my mom cut it short when I was 8, (because I was a pill about combing it) and I have worn it shoulder length or a bit longer since high school. (see my rant above) I too am thankful to be comfortable with scarves and confident in public. Maybe applesauce with turkey breast or chicken would help? kind of like cranberry sauce at thanksgiving, with less sugar and more fiber? Just a thought. blessings to you, A

labscientistmom

Pepper: GREAT job on the HuffPost article. You do indeed rock the party that brought you! I would add for all as you are passing on wisdom to others< DO YOUR MONTHLY SELF CHECK!! my last mammo, which I do yearly because of family history, was negative. I had pain in my breast in February, don't think that can't be cancer!!! I would have waited until annual mammo in MAY, so glad I didn't. I have had a bunch of friends go get their mammo cause they were putting it off, because of my diagnosis.

Great message, so important!!

adotson79

labscientistmom- Yes love turkey and chicken! Not a big fan of applesauce but I'm willing to try anything that tastes ok and is not full of sugar. Will have to do some experimenting this week as I start feeling better. Thanks!

Joeychen

bbbb and clarkblue, I'm another TC gal (4 cycles)!

Clarkblue, it will be awesome to hear how your SE are, I'm just over a week out from my first one. I've been getting some scalp tingles eek! Haha, I have fine hair, I don't think it will hold on well.

Interesting that you felt better 7-8 days out. After today, and crossing my fingers that it continues, I can say that has happened for me too! TMI, but I've only pooped once today so far! lol.

My mouth feels furry tho, I need to be better about rinsing more.

Have you found the SE to be cumulative/getting worse each cycle, or are they mostly the same each time?

Cheers,

--jo

revnet

Joeychen I'm also TC. Will have my 2nd treatment in a week, and like you I am very curious about the answer of the SE's being pretty similar each time, or if they compound........

pepper43

Woke up at 4 (thanks steroids!) and am killing some time to get a bit more light for my morning stroll. I shared this link on the FB group but will share here as well since it sounds like it's a ridiculously insightful piece on what we can do to reduce our risk of recurrence. Wishing you all a very super Saturday.

Cody3110

Good morning pepper. I'm with you on the early morning steroid wake up. Wish I could sleep till 6am

Anonymous

Hi All,

Thanks Pepper for that link, very interesting indeed. The diabetes bit concerns me greatly, as I have been Type 1 since age 14!!! Maybe I need to be reducing insulin levels even more than normal. But it is clear that weight and exercise are massive factors in this fight against recurrence. I feel I have addressed a fair number of issues these last few months, but am going to have to get to the weight loss more seriously. I have been walking, but plan on getting to gym as soon as I am healthy enough to be in a gym and get swimming daily and maybe a class in addition to that. My life is no longer going to be filled with after hours marking and prep. It will now be spent on my health.

Labscientist, the hair thing you are absolutely right in that certain parts of society has made us have this image of hair. In Scotland and Ireland there were institutions called the Magdalene Asylums for 'fallen women' who were sent there to pay for their crimes of being 'loose'. The first thing they did when these girls arrived was shave their heads and made them put on sack clothing. It was thought that by shaving their heads they would be less likely to try to escape as they would be so unattractive and embarrassed and also that men would no longer find them desirable. All because the message there is that hair is what makes a woman beautiful. Yet the Maasai tribe in Kenya have a rather reversed image. Women of the Maasai shave their heads bare and are deemed to be beautiful and it is the men who have the long elaborate hairdos, as long hair on men is seen as a sign of strength, virility and masculinity Haha...what a load of utter tripe. Hair is just this weird wirey stuff that grows out (or doesn't if you are on chemo) of our heads to keep us warm.

What caused this dizzy spell? FIND OUT please. And can you maybe take things a bit easier??? I think you are running about too much. Between you and Moondust who goes up mountains and skydiving during chemo, I just despair, oh and nutty Pepper too, who goes off jogging down highways at 4 in the morning!!!

Anyway, I think the women on this forum have shown how beautiful no hair can be! The beauty of a person I think is always seen in their smile. So let's keep smiling ladies! Even you KNardo!!!!!!

I am sorry to hear about you cutting your foot. YIKES. Did it bleed for ages like my finger did? I was pretty shocked at how long mine took to stop. If it had not been for these wound healing plasters, I don't know how I would have got it to stop. Go buy some. They have a sort of jelly thing packed into the plaster bit that goes directly onto the wound. Very good plasters.

Bbbb, I am soooooooooooooooo glad to hear you are clear on the scans. That certainly does make for a good week and make you able to face the next chemo with a smile on your face. Sorry hubby is not going to be about for a bit, and not for head shave, but we will be with you during it!!! Tell us the exact time you are doing it and we will all have a virtual moment for you. And just think powerful, strong and beautiful Maasai warrior!!!

Adotson, Hope SEs will reduce and you can get some taste back. It is weird how things you normally ate with no trouble at all, now seem to pose a problem. Coffee is my big one. I miss it soooooooooooo much. I am also sorry to hear of the bubble about hair, but we have all done it. The first day I brushed out a clump of hair, I sat on my bed and cried and just held that hair in my hand...could NOT even put it in the bucket. I didn't want to let it go!!! Then I got angry and decided not to let this medication affect my personality, character and good humour. I prefer to giggle than cry. This hair thing will pass for all of us. I absolutely plan on getting back my great skin, lack of eye bags and silky smooth hair!

Moondust, I hope you are behaving up those mountains and not pestering the bears haha...Keep safe in the sun and don't knacker yourself! But sooooooooooo glad you have gone with friends! (I know you cannot read this, but still ...)

OK anyone else I have not mentioned, nothing personal, it's just that there are so many on this thread now. Heathet, hope you are doing well, KNardo, hope you are feeling better about everything, Districtgirl hope you are now enjoying some grub and getting those calories in you, are you still going ahead with cold cap. I hope I have shown you something of what you can be left with, after almost 6 weeks! Keely, you are racing way ahead the rest of us. How did that happen? Did you not escape another forum and join a cooler one haha?? Hmmm and we let you in??? hahah However it is so good to know you will be done very soon. I will be starting Rads same time as you and in September. We need to talk about those tattoos...I am NOT having them. I just cannot do it!

OK, I am off to tidy house as have my guest coming on Monday...We are going to cook dinner together. I am thinking organic chicken breasts stuffed with pepper cheese and apricots and wrapped in parma ham, then done in stock for a bit and finally add in organic cream. It is lovely!!!!! I am also going to make a naughty pudding too for my 'puff pastry' but I will not eat any myself. I am thinking homemade apple crumble or maybe a cheesecake...oh my mouth is watering now....

DD

PS sorry for long post, but I am a talker!!!!

boobsBgone

It has been a couple days. Chemo knocked me out yesterday, I think I was awake on/off for a total of 3 hours. the worst SE this time was nausea, again. Plus extremely tired to the point I could not be upright for more than 30 minutes. Went out with hubby for an errand and passed out for an hour when I got home. cannot seem to stomach anything, I get major cramps after I eat, even the tiny amounts. But still eating something so I have can pretend to be normal.

I love hearing the good news on the tests and those feeling better, we each have ours and moving one day closer to kicking cancer out!

I got sad and upset earlier, again, that my life is interrupted. I have better things to do than have cancer. I only let myself wine about it for 10 minutes, then moved on to more positive and productive thoughts.

welcome to the new members, so glad you found us. I only have 4 treatments left (3-weeks apart) before surgery. I have never wanted the new year to come along so quickly!

bright side, a friend is coming to town tonight -yeah- and hoping i will be up to hanging out with her tomorrow. I am pushing myself to rest now and be better for the next week while she is here.

Dolly - keep reading 'organic ice cream' in your post. oh, how I love ice cream! promised myself no additional sugar this week, just the natural stuff from fruit. now, if my taste buds will just cooperate - so something tastes normal for me!

I want to repeat this each time - we are all strong and you all inspire me to be better and feel better. Thank You.

bbbb

Hair is falling out and I am freaking out! Deep breaths! I know alot of you have already been through this and did it well - I am trying to do this well but ...!

labscientistmom

Dolly: I actually took my son to the pediatrician yesterday as he's been coughing for about a week, and complaining of earache. (he's just got a cold/viral infection, which is a relief) He got measured, and at 12 1/2 he's grown an inch in 3 months, now only 1/4 inch shorter than me. Wow!! While I was there he looked at my foot, said it looked ok, he didn't see anything inside it. I found the sharp thing I stepped on, a bit of broken plate. thankfully I covered it and it's not quite as painful to walk on today. Not sure what happened with the dizzy spell, but I have husband and so with me all day today. My nurse friend said maybe just a drop in blood pressure. Still having bad sinus headache today, nose was bleeding when I got up. At least I slept mostly well, woke up several times, but went back to sleep. Not to worry, we are not going to the zoo, going to all see a movie, then dropping off son @Ninja Night at karate studio so husband & I can go on a dinner date.

Your date sounds lovely, and the food does too! It sounds like a good plan in place. Hope you have a great time!!!

bbbb: BREATHE, remember it will grow back. You too can be beautiful with short/no hair. scarves, hats, chemobeanines in many colors, you CAN do this!!! Please don't get me wrong, I miss my hair. I am trying not to dwell on that...instead to Remember what Dolly said, you can regrow hair, but can't regrow a llver or a brain. Its an acceptable tradeoff for killing every....last....nasty little cancer cell, so it NEVER comes back!!!

boobsBgone, KNardo88, ClarkBlue, Joeychen, hope today is better than yesterday. Everyone do something fun. something that makes you laugh. Get lots of hugs from loved ones. Let those who love you take care of you. I agree with boobsBgone, You are all strong and amazing, I feel like we are all in this together, and it helps me be brave. Blessings to all.

spb1954

Thank you

bbbb

Labscientist - thanks! I know it's going to be ok just didn't think I would cry over losing my hair - thought I was prepared but it is hitting me like a ton of bricks! I cant tell you how much it helps knowing that most of you have already been through this day and survived and I will survive too - ITS JUST HAIR!

Anonymous

Bbbb, I brushed my hair today after a week of no washing or brushing (jeez that makes it almost NOT worth having hair), and got some shedding. Not much, but enough to see that I ma going to have less and less each week! It panics me each week to see each time a little bit more going.

You, I suppose are not going to have my hassle. NO horrid cold capping and no panics weekly...shave it and do it with strength and know that it is temporary. Hair grows really quite quickly. About 1 inch a month. So within 4 months you have a good head of hair. It is the gray that is getting me down. I have been naughty and been using a wee water-based spray dye by L'Oreal. It covers me up and so far hair has not dropped to my feet. I have been a chemo rebel what with my fake tan and now hair dye...I have tooth whitener....thought about using it today and then just thought...nooooooooooooooooooo....that is going too far.

Do you have lovely scarves to wear? I really think some of these scarves are so cool and so trendy. Labscientist has pretty ones!

D

Coffee-lover

bbbb - you're not alone. I sobbed in the shower when big gobs came out. I still feel a twinge when I look in the mirror. I keep telling myself that it's only til nov. I'm sorry you're going thru this. But you're beating cancer. Big hugs!!

bbbb

Dolly and Coffee Lover - Thanks for the encouragement - I do keep telling myself that this means the chemo is working - I would be freaked out if my hair didn't fall out thinking the chemo is NOT working. Its all just a mind game and I have to overcome the panic when I see hair in my hands and not on my head. I didn't start chemo until the 27th so I am a little behind everyone but I knew I was not alone and this was a great place to vent and know you all would understand because you have been there or are there right now! It comforts me to know you guys are surviving and I will too!

Anonymous

Bbbb,

Of course you will survive this hair thing. You have survived a diagnosis, biopsy and ops and chemo etc etc....this is hair only. It is distressing though, I have always had lovely thick bushy 'wild' hair. I loved it. I look in the mirror these days and just feel so low when I see it thinning and falling out. I think to be honest I am more concerned about the effect Tamoxifen might have on my hair as that can thin hair too. And that might be for a very long time...

D

Heathet

bbbb- my hair is shedding today too. My scalp is so tender. I thought it wouldn't be so upsetting but it is. 🙁 The thing I hate the most about chemo is never knowing how I'm exactly going to feel day to day, emotionally and physically. It seems like I feel so fatigued and I get chilly at the drop of a pin. I'm always wrapped up in a blanket! I go Tuesday to my MO for blood work and I'm curious to see if I'm anemic. I run on the low side to begin with and I'm pretty sure the chemo has dropped it. I'm eating lots of spinach, Total cereal and other protein stuff but I think I may need more.

boobsBgone

As for hair, I shaved mine to peach fuzz and now there are bald patches in the fuzziness. it will grow back. I have caps (biker skull cap) to wear when I go out, no biggie. (so far). It still weirds me out some that the fuzziness keeps thinning - I know it will grow back, well it better I had great hair before this!

quick (embarrassing) question - has anyone developed a rash (kinda like diaper rash?) i think from sleeping all day yesterday with the sweats - I now am uncomfortable. sent hubby to find cream for me. just wondering what works best. thanks.

Anonymous

boobsB,

E45 is good. And probably easiest to get at short notice.

D

revnet

I'm 15 days post my 1st TC. I did the cold capping, but not sure how much longer until I can expect some shedding on my head. My pubes are practically gone, so I know the scalp shedding isn't far behind and we'll see how successful the cold caps will be for me. I have very short, and very fine textured hair. Not sure if that will be an advantage or not.... The waiting...

bbbb

Revnet - best wishes with the cold capping ! The hair on my head is the ONLY thing that is going right now - guess that's why I was so shocked - I expected other areas to go first!

Dolly - yes I am going to survive! It is such an emotional roller coaster - you feel great one day - ready to conquer anything that comes your way - and the next day you are holding a handful of hair and it makes you totally fall apart! I have to keep focusing on the good things - chemo is killing any stragglers - scans showed I don't have anything else - I feel great - I need to be thankful instead of fretting about this hair! Your hair still looks great on your pics - glad to see your cold capping seems to be doing the job! I never considered it but now I wish I would have!

Heathet - I know - it seems we just keep getting hit between SE's and just dealing with everyday stuff. My head is not tingling or anything so I was surprised that it started today. Don't know if I will have enough hair to fix for church tomorrow! Hopefully the doctor can help with the anemia and fatigue. I tend to get hot very easy and when I get hot I get nauseous and I haven't even started the meds to put me into menopause - hang in there - we are shedding - prayers for you!

boobsbgone - haven't had a rash but I hear that using the flushable wipes does help - praying it gets better quickly as a rash is NOT good! I will shave on Monday or Tuesday if there is anything left. Hoping there is enough hair left in the morning to fix for church on Sunday! If not, I will shave and use the wig. Not my original plan but nothing has gone according to plan so far so I must go with the flow!

Anonymous

Revnet,

I am cold capping too and my one big huge shed was only about day 16. I have read that with cold capping you only get the ONE big shedding after the first treatment and then it is very gradual hairs each day....so for me I am sort of doing a race with time. I have a lot f hair on head just now after nearly 6 weeks. BUT I am only washing it ONCE a week and not brushing it at all. I also tie it back in a very loose scrunchie. Also I am using Philip Kingsley hair shampoo for chemo patients. But have also heard (trying this tomorrow) that you can massage olive oil into your roots to give added strength and try to help with less loss. I am also sitting with head between legs several times a day to get blood rushing to head to feed follicles more with blood. God....it is just as well I am currently off work and on school hols. Too many hair-related things to do.

I am going to fight this hair thing out....and I am NOT going to lose the stuff....do you hear CHEMO???? You are not having my hair too!

DD

Anonymous

Anyone thought about asking to have henna used as marker for radiotherapy? Just read about this being done.

http://www.hennapage.com/henna/encyclopedia/medica...

I am going to ask.

D