Starting Chemo January 2015

PMR53

Good morning to all.

Chemo #2 done. I have a handle on big C. That's not happening. Got Phergan and Compazine and Zofran for Nausea. Special K said beware of Zofran. Didn't work for her and gave her headaches. Have any of you had experience with it?

Dstar good luck with #2 on Thurday!! How do you feel you will be knowledgeable this time? What a joke haha. Better at chemo?? Amazed about your hair. My has thinned a ton. But still hanging on.

Beachbum. Will remember to had Biotin in my ever expanding medicine cabinet. If you ladies have dry skin like I do. I bought Bio-oil at Walgreens. It's with face lotion. It is awesome to put anywhere.

Brandi999 can't believe you are workin grueling night shifts! Wow. I have chemo brain and fatigue easily. I am an RN also but am not going to work for many months. I hope you can cut back another day!! I am so scared of germs at this point. The hospital is the last place I want to be. It sounds like you have an easy patient load though.

Sweet Hope. Good luck with # 2!! It was good to get it behind me yesterday. Closer to the finish line!!

Here's to all of us. Hoping for strength and minimum SE to all today.

Patty

jlstacey

Hello Everyone, I'm new to this forum. I found a lump on 12/23/2014 and the whirlwind started on 1/6/2015 with mammogram/ultrasound/biopsy. I do not know stage, as I haven't asked, but I think it's IIa because it is 4cm,  0 lymph nodes and not metastasized.  I started chemo last Thursday. The first night I had nausea as I didn't take the anti-nausea rescue med soon enough, then Friday I was tired. I was OK Saturday but Sunday I started have taste change and more side effects.

I am awaiting genetic testing results, which will help me decide on mastectomy versus double mastectomy.

The hardest part for me so far is eating. Things don't taste right and the nausea makes me not want to eat. The things I crave will surely make me sick- I really want french fries! I have been eating fruit, vegetables, salad, soup etc. I have had some Outshine popsicles to help get some liquids down with taste. What about you? Is eating hard?

 

Brandi999

PMR53, I'm a home health nurse so I have only 1 patient. There's no way I'd work in a hospital and do this. I know some that do but I don't think I could handle it. Also, my patient is very immune compromised so in a way, it's the best place I can be. The family is already super conscious of germs and being clean. They are also very supportive of this journey I'm going through. The mom even crocheted me a hat and scarf. So sweet! I love those people. My spouse wants me to go on short term disability but I'm being very stubborn about it. First off, I don't want to lose this house. It's the best house I've ever worked in. Secondly, I never get to leave my house now except for work and doctor's appointments. I think it wouldn't be so bad if it wasn't for the long shifts.

jlstacey, Sorry you are having to go through this scary thing but we are here for you. The stress seems to ease up once you get the answers to all the questions like the stage, genetics, and your plan of what to do next. Then it mostly becomes routine and we are just navigating through the side effects. One thing that seems to help with eating is use plastic flatwear. Also keep meals small and frequent and certain things seem to go down better than others. A lot of people seem to have a hard time with acidic and heavy foods like beef and tomato sauce type stuff. I have a lot of bland soup like Amy's organic black bean, lentil, and vegetable soup. If I'm ever feeling real bad that's what I eat. I also bought some popsicle makers and put apple juice in them. I drink lots of that and prune juice, as well as taking stool softeners and drinking tons of water. Even that wasn't enough to stop my constipation on chemo days so stay on top of that and spare yourself some suffering.

kjybaby

Someone mentioned the Squatty Potty and YES! Like you, I too improvise and use a wastebasket. I actually learned about it a year or so ago and it truly helps.

Jlstacey - eating has been difficult for me too. By nature, I am someone who is used to eating every 2 hours but I'm struggling to eat much at all. I have such a heightened sense of smell right now due to chemo that most foods smell overwhelming which makes me not want to eat them. Also, I'm able to eat 3 or 4 bites of anything at most before I can no longer stomach to chew or swallow. I've found most success with fruits (the juicier, the better), veggies and soups - Popsicles have become a bit of a saving grace.

Today is my first day back at work since my first infusion last Thursday, and I'm struggling. I was going a bit stir crazy from being in my apartment, but I can't wait to get back home. I'm not sure I'll be able to make it the full day today. It's not that I'm nauseous or in pain, but I just feel tired. I know exercise is supposed to help with fatigue, so I'm going to do my best to walk on the treadmill today for 15 mins or so. My med onc mentioned that American Ginseng is known to help combat fatigue as well - has anyone tried it?

Beachbum1023

Good morning all, I never tried the ginseng, but may be worth it. Juice and popsicles were on my go to snack list. Plastic forks and spoons helped me out too. If the smells of the food is too much, try to eat things cold or at room temperature. Frozen grapes are pretty tasty, and I used lemon pepper seasoning on pasta, chicken, and veggies. It had a taste, and color! I drank a lot of water also, and when that was boring I would drink a small glass of 100% grape juice and skipped the carbonated drinks. Bye fountain Pepsi!! Grr....I have only had 2 fountain Pepsi since last June! But enough veggies to fill a huge garden. A good thing.

Sadly the Big C and other side effects are a constant battle throughout chemo. I got ahead of them, and I used Zofran a lot as directed by the MO. I think it worked well for me since I used it on a regular basis. No need to wait and see, just fight first to win the SE battles. I do have heart issues and neuropathy from the chemo. I will be treating them forever. Be aware of what your body tells you, very important when fighting this war! As far as eating all day only small meals, I would snack as much as possible because a large meal did not work for me. And when I say small, it could be a frozen banana, a few bites of Jell-o, or mandarin oranges. My nurses told me to eat as much as I could to not drop weight. Happy to say, my weight is exactly the same as the day I started chemo.

You all sound positive, and ready to do battle with whatever comes your way. Very inspiring to everyone!

Tennisfan

Ladies, just a word of caution about Ginseng. I was given a list of incompatible foods to avoid during chemo including pomegranate, starfruit, grapefruit juice (it's actually bad with any medication), green tea, Sevilla oranges and others, as the interaction of this food is either unknown, haphazard or counterintuitive (as the chemo is bringing our immune system down, eating or drinking anti-oxydants and immune system boosters goes against your treatment says my onco nurse).

So I would check with MO or dietician before trying ginseng. I faintly remember it to be part of some list but unsure where I took the latterinfo.

Better safe than sorry!

loriekg

Hi jistacey! I was dx on 1/6…can you believe how much has changed for us in less than a MONTH? "A whirlwind" is right!

Yes, eating was definitely a problem but it is pretty much back to normal now. I'd say for about one full week after chemo it was hard to eat. Between the heartburn and the weird feeling in my mouth, nothing sounded good except very bland foods. I haven't noticed the problem with the metal utensils that others have mentioned. Chicken pot pies, chicken stew, chicken sandwiches….I hope I can stand the sight of chicken when this is over!

--Lorie

jlstacey

I didn't realize my signature didn't show my details. Dx 1/9/15, started A/C chemo on 1/29. I am triple negative, the mass is approx. 4cm, no lymph nodes and no metastastis. I will have four A/C treatments, every two weeks, then weekly T for 12 weeks. After that is surgery.

For me, everything now just tastes off. Does it stay that way the entire time, or do you have a week where stuff tastes normal again before the next chemo treatment?  I just made a smoothy with vanilla greek yogurt, honey and frozen blueberries. Normally it tastes great, but not so much now!! This is going to be a long 5 months....I'm trying to keep my head in the game.

Beachbum, I'm sorry about the neuropathy and heart issues. Did you do taxol weekly or biweekly?  My MO has said that weekly T in smaller doses is supposed to reduce that side effect as opposed to doing full doses every two weeks.

I had the big C horribly this past weekend. I stomached prune juice and MOM after trying everything under the sun. This is something I'm going to try very hard to get ahead of!  As for eating bananas and drinking apple juice, I would be afraid of that countering  anti-C efforts? 

I hope everyone has had a good day (as good as possible!!). 

 

 

 

 

Beachbum1023

Hi benjnate, thanks! I had dose dense every other week on Taxol. If you are eating things that you normally would, try something else. You may hate them after chemo, with recall. That happens, I haven't had mac and cheese since my last chemo. Or oranges, celery, and scrambled eggs either. I threw all of the shirts I wore to chemo away too. Just something I never wanted to see again.

But try the plastic forks and spoons, I used the clear ones. I drink out of straws now too. My nurses told me to eat whatever I could, no judgement on my diet.

TeriMP

Hi ladies, I hope you are all doing well! I haven't been in in a couple of days but have kept up with the posts. Sounds like everyone is managing their side effects and know what to expect for their second rounds.

I had my PICC placed yesterday, for those who may get one (forgo port) I can tell you it's not the worst experience to go through, but not pleasant by any means. The whole thing takes maybe 10-20 minutes. Starts off with an ultrasound of the arm to find a good vein, they then use lidocaine to freeze the area (most painful part of the whole thing). They then make a tiny incision and threat a small wire into the vein up to the heart (they neglected to tell me once it close to the heart it makes you have hard core palpitations, I had a freak out thinking I was having a heart attack). Once in place the insert the iv and remove the wire. My arm is still quite tender but used it to have blood taken today. Much better than getting a needle!!

I met with my oncologist today and voiced my frustrations over the lack of help/care the triage nurses offered over the bone/joint pain I had. She was very good about it, I did ask for a pain med that is a step up from Tylenol to help if I get it this time around. I was expecting maybe T1 or T3 but she have me oxycodone (seems aggressive, but I'll take it if I need it).

Other than that blood test and WBC are all normal, I am ready for round 2 on Thursday. I have my Zantac, anti-nausea and "C" pills all ready to go!

Wishing everyone the best!!

Teri

Beachbum1023

Hi TeriMP, it sounds like you have a plan and are ready for war! Good for you. I had really bad bone/muscle/joint pain when I was on Taxol with Neulasta. I thought my bones exploded, it was so bad. I took Tylenol with codeine and that worked for me. The last Neulasta was cut in half since I was refusing to take the whole dose. The 1/2 was fine, no problem. I do get very upset when I have side effects and they look at me like I am crazy. The hard part is begging for help, that shouldn't EVER happen to any cancer patient. I'm Stage IV, I have pain! At this point, how addicted can I get?? I don't care, I just want a quality of life, and as pain free as possible!

Brandi999

I had my bloodwork done today (1 week post Neulesta/chemo) and it didn't work for me again. This time my WBC count was 1.1 and Neutrophils were 0.2, which is a bit worse than last time. I was also dehydrated since my complete paranoia of the C returning got me going the other way when I drank a bottle of mag citrate. Oh it was effective all right! My blood pressure took forever because it was so low it would barely register on the machine. Also I had a temp last night so today I had a big bag of IV fluids, a Neupogen shot, a bag of antibiotic fluids and some anti-nausea stuff. Tomorrow I have to go in and do it all over. I fear I am really going to have to go on disability, which freaks me out because I do not have any paid time off so all I can get is whatever disability offers and hope I don't go down the drain financially. So frustrating because I REALLY love the house I work and and I don't want to lose my spot there OR let them down because they are so awesome. GRRRR! Just totally frustrated right now.

TeriMP

I'm sorry to hear that Brandi999!! I hope the fluids and antibiotics will be able to get you back on track. It is definitely a tough go but you are strong and will make it through. I apologize as I can't remember, how often are your treatments?

Is there a different kind of drug that the docs can offer to boost your WBC? I am from Canada and I don't know if it is just my oncologist or if it's standard here but they don't offer the neulasta unless they absolutely have to. My neutrophil was 0.7 when i had to go to the ER for fever/sore throat. They said that was normal to go that low during chemo and to just be safe/stay out of the public.

Wishing you the best and speedy recovery!

Teri

TeriMP

beachbum I 100% agree with you that we should not have to beg for medication that will ease our side effects or make daily living tolerable!!

These nurses deal with patients every day and should have a full understanding of what we are going through. Treating us like drug addicts is ridiculous (I had one nurse tell me I could become addicted). I am the person that avoids taking pills unless I absolutely have too; it serious if I am asking for help!!

I thought I would have got Tylenol with codeine as well, I was very surprised when I saw the prescription. Let's hope I won't have to take it.

Once I am done with my treatment I have a very big bottle of alcohol with my name on it.

Take care!!

Teri

Beachbum1023

Hello Ladies, I had 8 Neulasta injections after my AC/T chemo. My MO was adamant that I have them. When I got the bill I almost had a heart attack at the total. My insurance company was billed $4,780.00 per injection times 8!! i did receive a letter from the insurance company that I have to have them approved if I have any Neulasta injections starting 9/1/15. I thought that the bone/muscle/joint pain was severe. I'm not sure now what hurts worse, the body parts or the checkbook! But it did get me through chemo on time, without any delays!

Brandi999

TeriMP, currently my treatments are every 2 weeks for 2 more treatments, then every week. I had the Neulasta shot but it didn't work so now they are trying Neupogen shots. We shall see on that one.

Beachbum1023 I have never heard of having that many Neulasta shots with one treatment! They told me each shot costs $11,000. I have to wonder if my insurance will keep paying considering they don't really work that well but I guess it's better than nothing. I do remember getting bone pain at about day 9 and OMG it was horrible!! It was so bad it made me cry and usually only sappy stuff can do that to me. I didn't take anything because I wasn't sure what I could take but after I saw the doc I took 600 mg of Ibuprofen and some turmeric and it calmed right down. That was after going all night feeling like my bones were going to explode. So far, after this shot though, nothing. I know now that bone pains means it working.

SweetHope

I am gobsmacked at the cost of these shots! Brandi, you need to demand a refund. (Fingers are crossed that you get to keep your great job.)

Beachbum, keep up the good fight insisting on quality of care. You not only advocate for yourself, you are teaching these nurses a valuable lesson they should have learned in Nursing 101.

In two hours I get AC #2. Soon I will start counting the minutes. Last night DH shaved my head...laughter through tears. Even with cancer, I was more upset with how fat I am in the photos!

Before:

After:

Tennisfan

Nice smile and nice head, SweetHope! Good luck with cycle 2 today

Brandi999

Love the pics!! Sweethope, I didn't actually pay for the shots. There's some program where the manufacturer pays for it, or a large portion. I'm not sure how it works but I signed a paper and there was a credit card type thing attached. They said when it runs out of money they just call the manufacturer to load more money on it and they do. Works for me!

spookisgirl

Great pics Sweethope! Good luck with your infusion!

RV6gal

Sweethope, great smile! Hope infusion 2 went well for you

dimccleland

Good luck with infusion number 2 Sweethope ... hope it goes well x

I had Taxol round three 3 today ... must admit that I have found the last week very tough ... still struggling with diarrhea - my mo has prescribed Imodium but it hasn't really helped very much. I've lost another kilo in the past week and I am sure it is because everything I eat just goes straight through me. I'm wondering whether this side-effect is linked to the Taxol or to the Perjeta which I have once every three weeks - any ideas?

My MO was also a little concerned that I am already feeling some numbness in my hands and feet ... both my big toes have gone numb and my hands tingle from time-to-time ... she feels that this se has started early than usual and says I must be super sensitive to the chemo ... she has prescribed to Neurobian to help so fingers crossed that it works.

I managed to work three full days this week ... went okay but must admit that I was absolutely shattered at the end of every day ... not even really capable of coherent conversation ... feel like I am turning into a recluse ... not going anywhere or doing anything ... just don't have the energy ... we've been invited to a farewell party in Friday night so will try and go for a few hours and see how I cope ... might also try and meet a girlfriend for breakfast on Saturday ... let's see

I started losing my hair yesterday ... noticed a bit more hair fall than usual when I washed it yesterday and then this morning in the shower it was falling out by the handful ... haven't decided yet whether to just let nature take it's course or whether to shave it. My husband thinks it great fun to pull it out ... men!

Brandi & Sweethope, I am also stunned at the cost of these treatments and am so grateful that I have such a good private health insurance ... my Taxol treatments cost around US$ 3,000 a session and around US$ 30,000 when they add Herceptin and Perjeta to the cocktail ... not sure how that compares to the U.S.!!

On that note, I'm goin to sign off and head to bed ... it's 21:20 here in Dubai ... wishing you all a wonderful day

Di xxx

Beachbum1023

My MO sent me to a Neurologist for the neuropathy in my feet and hands. I am taking meds three times a day to stop the nerve damage. While the larger nerves tested normal, all of the small nerves in my feet and hands did not. The nerve damage is now permanent, it was from the Taxol and it started after I started Taxol after AC. The Adriamycin damaged my heart affecting the EF action of the heart. My cardiologist said that the A chemo caused that, and it is also permanent. I take heart meds twice a day, and have a ECHO every three months. My MO seems to push all of my other problems to another Doctor for treatment, and she acts like chemo couldn't be the cause. Not sure how they treat your side effects in Dubai.

dimccleland

Hey beachbum ... you really have had a rough journey ... I take my hat off to you. I must admit that my MO is the same with regards side effects ... I have felt like I've had a really bad head cold / sinus since I started the Taxol but she says it has nothing to do with the chemo ... I will go to my GP tomorrow just to check it out but I don't think they will find anything. I have Ankylosing Spondylitis and Fibromyalgia so I am wondering whether that might be the reason for the neuropathy starting early - I have had to stop faking all my AS meds too ... may see if I can get an appointment to send my rheumatologist and get her opinion too xx

Beachbum1023

My MO sent me to a Rheumatologist because she said that I had arthritis, the X-rays showed degenerating joints from chemo. I was given a lovely moon boot to wear in ortho. But at least that helped my loose toenails since it was a open toe boot. I just wish the MO was a bit more proactive and helpful when all of the side effects start to happen.

dstar

SweetHope, you are so cute! And I love your hubby, careful and paying attention to detail. So sweet!

Brandi, sorry you are having a tough time. My heart goes out to you. I had severe bone pain yesterday for the first time, WOW! I fell down when I stood up. Had to take ativan for nausea from pain then 2 tylenol with codeine before I could sleep. Laid in bed groaning, felt so pathetic but could not stop. Man, I want to talk to my doctor about taking less Neupogen. I give myself my own shots.We will see where my white blood cell count is tomorrow.

BeachBum, I feel the need sometimes when I read your posts to fly to Ohio and slap your onco doc back into medical school since she seemed to miss some keys parts of treating a patient and "doing no harm."

Patti, you seem better and that makes me happy. I will think of you during my infusion tomorrow.

Ok, working now from home for a bit.

Good Luck everyone!

Dana

Beachbum1023

Hi dstar, I wish you would slap her back to school! This is a rough go anyway, and to end up with heart damage and neuropathy really ticks me off. I guess I answered her questions every two weeks to just fill in the blanks. But shortness of breath is something to worry about I found out. Now I have rads, and I was told it only hits a small part of the lung. Then to make me really scared, they said that a lot of people have the lobe or even a whole lung removed and they are just fine with one lung!!! Geez, the cure just may be worse than the cancer. But I'll do it 20 more times.

PMR53

Dstar i am so sorry about your pain from the Neupogen shots. What is your white count today? Are you taking Claritin? It seemed to help. I know the feeling of getting up and almost falling down. This chemo stuff is not for the weak. I get Neulasta shots they are like 11.000 a shot that's insane. I only got a half dose this time. I asked if it was half the price? But it isn't.

Brandy999 I am praying that your pain eases up and your SE too. You need a reprieve here. Tell us how you are doing after fluids today.

Sweethope I love that your husband shaved your head. Bless him.

Beachbum it sounds like the chemo is responsible for the damage. As a nurse my biggest fear was chemo. Guess who is getting chemo? Me. My mom had a really hard time with chemo 10 years ago. She was 70. Now she is 80 and going strong. So it did save her life. Slippery Slope.

Dimcecleland. My hair is falling out too. Not sure when will shave but will be soon. I am glad it's winter here. I am definitely hunkering down until this is over. I don't have the energy to work. You are amazing! I feel like a recluse to and feel sad when everyone gets to keep on with their busy lives.

Here's to making it through another day. Hugs and love to all of you.

Patty

SweetHope

Dana, I've got the sky miles...let's go kick butt.

Beachbum, I'm heartsick (NO pun intended) and angry about your cardio problems and now neuropathy. Your posts have been so important, but I would rather have learned about these complications in the general information thread, not you. But Beachbum, nothing is worse than cancer.

Brandi, I was afraid you were going to get stuck with a ridiculously high bill. I told my Chemo nurse about the high cost of Neulasta. She said the before-discount cost is $17,000.00. That is not a typo! I thought that was crazy til I read Di's cocktail is $30,000! These costs are huge, but we are worth it!

Di, my fingers are crossed that you get only good news.

Speaking of good news, my bloodwork was so good "It's like you never had chemo." My hair sure knew! Today's chemo was uneventful. I could not go in my Mardi Gras outfit cause it was pouring rain all day and I did not want to ruin my ruby slippers and my cheap Dorothy wig was so itchy.

Thanks to all for the kind words about the pictures. I love that little monkey. I am printing it on good photo paper, framing it and putting her up on the mantle with all my grandsons pics. Help me name her.

Hope all have a complication free and side effect free future...starting NOW.

dimccleland

Patty, I was feeling really sad too ... not sure if it makes sense to say, I am surrounded by people who are really concerned about how I am doing but I have never felt lonelier ... it's my youngest son's 18th birthday in a few weeks and my daughter's 21st two weeks after that and I am determined that I need to celebrate with them. Michael Buble is coming to Dubai and will be playing on my daughter's 21st and she desperately wants me to go with her ... hopefully it will all work out.

Love and hugs to everybody ... hope today is a good one xx