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Wanted New tips on Chemo for--Janie
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GGrandmaJan posted:
Hi Janie,

I started a new thread for you on doing chemo. I didn't want you to get lost on the boards..

Best of luck to you this week in starting chemo. I have had chemo twice. The first time back in '06 way before I found this wonderful site. I must admit the unknown is the very worst of it. Like Judy said , drink lots of water to flush the stuff out of your body as soon as possible. I didn't do that and suffered more side effects. Other than that it wasn't too bad. Last year when I was on Abraxane the worst side effect was fatigue. When that hit I was done for until I took a nap. Easy fix. LOL.

I kept a journal and wrote down everything. How I felt--both physically and emotionally. Some days I would have pity parties but I never let them get to severe. Then I would get busy doing something I loved to do like sew or quilt. It restored my faith in myself I could still do the things I loved.

O.K. I must admit I detest cooking and have for the last 30 yrs. As it is only my DH and I here---there were many nights I told him to eat downtown when he went down for coffee anyway. I suppose I felt good enough to fix dinner but WHY!!! Some nights I just hated the smell of food let alone cook it. LOL.

One thing I was warned about but did not listen to was: someone told me after your first chemo do NOT eat something you really love. I did--- and have not eaten an omelet in the last 6 years. I have no idea why that happened but I want to let you know so it doesn't happen to you.

Stock up on apple juice and other mild fruit juices. They were easy to get down. Orange juice not so much. To acid for me. The milder your food you have in the house the better. My taste buds really changed and even just a hit of spicy food done me in.

Also about smells. I had a nose that worked over-time. Perfumes--spicy food---grills in resturants---after-shave on men and you name it. They all made me very queasy. I avoided them as much as I could. That is why in the infusion part of the clinic they ask you not to wear perfumes. It does tend to make some patients nauseated.

Also don't be a macho-woman but do ask your Dr for nausea meds or any meds you find you need. Now is not the time to be oh so brave. Please use the meds that are out there for you. You should not have to deal with nausea what-so-ever. Or lack of sleep. Ask for meds to help you.

I will be on Pinkie to hold your hand. Really chemo isn't as bad as you might read in places on the internet.

Thanks for your post. I am thrilled I am done with scans and etc for a few weeks. AHA---you think my Dr. Dreamy was giving me a compliment??? I really don't think so---I think he is trying very hard to understand me. Like my Hubby said, "Good luck to him. I have tried for almost 30 yrs to do that one!" I even have my DH calling him Dr. Dreamy. One of these days I am going to slip and call him that myself. UGH. My Dr doesn't know it but me having fun at his expense has made my summer go by OH so much faster even waiting all the time for results.

Sending you good thoughts.
Fondly
Jan
He who laughs at himself, never runs out of things to laugh at.
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An_247870 responded:
sorry you are going through this. I finished my chemo in June.

Liquids are VERY important. Juices that appeal to you are good. Be careful about cranberry juice, however. it is a diuretic so you could be drinking it thinking you are doing a good thing and be getting dehydrated. I had to have fluids by IV several times before anyone told me about cranberry juice.

At first I tried to drink the 12 cups of liquid every day and eat as usual. I started having acid reflux, which I had never had before. Eventually I realized that there was not enough room in my stomach for all that liquid plus solid foods. The liquids in your foods count. I changed to soup for my lunch. This helped. I also ate sorbet when I wanted something sweet. Both increased my liquid intake.

Some foods that we have often tasted different but I could eat. Other foods I could not tolerate. All trial-and-error. Some foods had no flavor at all. Foods that appealed changed as chemo went on.

There are several anti-nausea meds available. I tried 4 different ones before I found one that was reliably effective for me. At no time did I ever experience a 'stomach flu' type of nausea. It was more like a heaviness in my stomach.

Try to move around as much as you can. Chemo patients are at increased risk of blood clots. I found out the hard way.

Try to keep a positive attitude. It does help. Keep in touch with family and friends. You will feel less isolated. However, stay away from people who are negative, or do not have encouraging things to say. You do not need to waste your energy overcoming the negative attitudes. You do not need to hear bad news. You will be pleasantly surprised at who will be supportive.

Use the energy you have to do things that you enjoy. It will lift your spirits.

Good luck on your treatments.
 
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vajanie replied to An_247870's response:
Hi,

Jan, you must have been reading my mind. I so appreciate your thoughts concerning my upcoming chemo. It's beginning on the 25th by the way. I haven't posted much recently partly because of a round of doctor's appointments but being honest about it, I had such a large pity party that there just wasn't time for anything else. I've decided that my trip to France 19 days after surgery was ill advised. I'm feeling kind of frail now, and that's a bad feeling. All of our airport experiences were harrowing and physically challenging. I came back exhausted. Also had an appointment with a new gastroenterologist last week who seemed to question my decision to have treatment at Duke. That's the third professional to do that.
I'll mention also that on my last visit one of my doctors said in a rather offhand manner "if this thing comes back, it'll be in about two or three years". I keep thinking about that, and wondering if I'll just recover from chemo and then here it is back again. I guess if it does then it does, and I'll deal with it. Anyway, sorry to pour all this out, but this is the only outlet I have. I have to be MISS PERKY with my family, except for one dear sister. Anyway, I'm getting myself together again today, putting on my "big girl pants".

Thanks for your excellent tips on dealing with chemo, many of which I have never read on another site. An, I certainly appreciate your input. I'm of course a babe in the woods on this until next week, and must admit I am very nervous about it. But I believe it was Michelle who reminded me that I don't have to be brave, just need to show up.

Jan, many thanks again for getting me going. I appreciate it more than you know.

Janie
 
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vajanie replied to vajanie's response:
Jan, forgot to add that I really do think that Dr. Dreamy was giving you a compliment. I believe the word "intriguing" doesn't mean he finds you difficult, maybe interesting, hard to read, somewhat mysterious. My older sister, 68 years old, recently blurted out to her ophthalmologist that she loved his sexy blue eyes. He was charmed.

Janie
 
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mhall6252 replied to vajanie's response:
Janie - going through chemo is not easy but you can do it. And I would ignore the advice of anyone who suggests that Duke is not qualified to treat you It is one of the top ten hospitals in the country. Ignore the naysayers! You don't need that added stress in your life.

I had dose dense adriamycin, cytoxan and taxol. I got through treatment with surprisingly few side effects. Hydration was key and I made sure I had 96 ounces of something each and every day, starting with the day before the first treatment. I brought beverages to treatment, even though they had plenty of stuff. I am diabetic so I went with low sugar drinks even though the center had plenty of fruit juices. I actually found the V8-Lite drinks very tolerable, especially when carbonated beverages no longer appealed to me. Juicy fruits, veggies, soups, puddings - they all count. I ate my weight in watermelon, I think! And I tried to eat plenty of protein. They recommend 90 grams a day and they measure your protein levels as part of your bloodwork. This is no time to be a vegetarian, in my opinion. I took a pre-natal vitamin for the extra iron and folic acid. That helped me prevent severe anemia.

There are drugs for every side effect except fatigue and hair loss. Well, actually, getting a good night's sleep is important and sleeping pills or ativan can help with that. But don't suffer through any side effect - there is almost always a solution. You may feel like a chemical waste dump before you are finished, but remember that it's temporary.

I agree with Jan about nausea. I was given Emend (one pill before treatment, then one each for two days after), IV aloxi, 6 mg of decadron, and an hour of IV hydration before each treatment. Plus we added a scopolamine patch (it's the patch people wear for seasickness). This may sound like a lot, and it was. But I compare the post-chemo feeling as similar to morning sickness, and I had many months of that feeling with each of my four pregnancies. So that combination worked for me. I had compazine and ativan for break-through nausea, but I rarely needed the additional help. The patch makes you thirsty, which then helped me drink enough to wash the chemo out of my system as quickly as possible.

I have found blogging to be extremely helpful as I've traveled this path. It helps keep family and friends informed and cut down on having to repeat myself a hundred times about how I was doing. It helped my family as they could refer their caring friends to my site.

There is no way to know who among us will suffer a recurrence. My cancer has shown an aggressive nature right from the beginning. But sometimes even the most aggressive ones don't recur. This part is really a crap shoot. All you can do is undergo treatment, do your best to get through it and continue to live as normal a life as possible. Deal with things one day at a time and don't anticipate the worst case scenario; otherwise, if it does happen, you'll have lived through it twice!

If you want to see pictures and learn more about that first chemo treatment, check out my blog and look for posts from June 2011. And yes, don't let anyone give you your favorite food during chemo treatments. My hubby brought me back a lobster roll during my first infusion, I couldn't eat another one for months! Thankfully, I recovered from that aversion! And smells...yeah, I was particularly sensitive during treatment. Avoid the seafood section of the grocery store...lol!

Good luck, Janie! You are well-prepared and should do just fine.

Hugs,
Michelle
Michelle
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!
 
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vajanie replied to mhall6252's response:
Hi Michelle,
Thanks for your words of encouragement and support. Also, I think the advice on getting through chemo is better from all of you than any publications I've read. Talk about thorough. I'm going to make a list of key points that all of you have given and post them on my refrigerator and take them to the infusion center.
Michelle, could I ask how you got your protein. I'm not vegetarian but have found that with aging a bit I no longer care much for red mead and am allergic to shellfish. I'm very interested in your idea of pre-natal vitamins. I'm now eating plain Greek yogurt and taking a pro-biotic daily, on the advice of my gastroenterologist.
I've wound up this pity party and sent the guests home. They were the medical professionals who questioned my choice of Duke for treatment. I'm back now and getting ready to do this thing. I'm home and making some soups to freeze for DH while I'm not feeling 100 per cent. I love doing that when I have fresh organic vegetables from the market.

I hope you continue to feel well with your new drug, and no side effects still. Best to you as always.

Janie







I hope you continue to do well with the new drug and still no side effects.
 
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GGrandmaJan replied to vajanie's response:
Oh Janie, Just remember the unknown is the thing that is so scary. You will do just fine. Take one day at a time.

It is kind of like eating an elephant (like Rachael always tells us) you don't eat the whole thing at once but just a bite at a time. I love how she describes things. But makes lots of sense.

I didn't do a blog as most of my stories I am afraid would be X-rated. LOL. Especially if I let my imagaintion run away with me. BUT----I did keep a journal. I got a medium size notebook that would fit in my purse. I wrote all my appt info in it. with all the dates and times. Then I found as they would ask you each time you go in for a chemo treatment all these questions. I addedd my physicall well-being PLUS my emotional state. It was so helpful to have that note-book handy at all times.

Then this time around (on my second journey) I keep forgetting to take the darn thing with me. My memory is way worse so guess that is why I forgot it. When Dr. Dreamy was asking me questions about the date I had finished the antibotic and when I had done this or that test or when I was to see my Onc Dr. again----I could NOT tell him. I told him I was sorry but I forgot my notebook, my small calendar and MY Brain. Thank goodness he did laugh with me but I wish I had been better prepared. So now I have up-dated my notebook and will take it with me. There is justt too much to remember when a person is under so much stress.

So my advice would be to get a medium size calendar---one that has squares in it to write all your appts in. and a note-book. Also when you are seeing new Dr's it is important to take aanother pair of ears with you. Family or hubby's You will be surprised how much you forget. Most Dr's will not mind if you take a tape recorder. They want you to understand what they are telling you.

I don't want to over-load you but another thing is------ Before each of my Dr's appts I wrote all my questions down on the computer---double spaced them. Took them with me to my appts. One Dr looked at my paper---took it and put all his answers on my page. So neat of him. I could actually read his writting also.

Anything you can think of to help you remember is very important. Hope these all help.

Also you will find so many people including Dr's giving you advice you have to take with a grain of salt. Not eveyone will give you good support.

Good luck to you. You will do just fine. How can you not do fine with all of us supporting you. LOL

Blessings
Jan
He who laughs at himself, never runs out of things to laugh at.
 
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mhall6252 replied to vajanie's response:
Janie - I like my steak and burgers, so I had no problem getting protein. If you don't want red meat, you can fill in the gaps with chicken, pork, cottage cheese, legumes, etc. I ate a lot of homemade chicken soup, too.

The pre-natal vitamin came about as I saw my red blood counts dropping. I was trying to eat enough protein to keep them up, but I was always testing just below the low end of the range. So I thought about the pre-natal vitamins and found one at WalMart that had a hefty dose of iron and folic acid. It made a big difference, and it may have helped with my hair regrowth, which was pretty fast.

One other tip - if you get the Neulasta shot, take a claritin (not the "D" version) the day of your shot and for three days afterwards. It will prevent the bone pain that can come from the Neulasta action in the bone marrow.

I'm glad all this is helping you. You are going to do fine!

Hugs,
Michelle
Michelle
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!
 
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vajanie replied to mhall6252's response:
I so appreciate all your responses and help. You're all a wealth of information that you don't find anywhere else. I've bought my calendar and my notebook and made a list of your tips for dealing with this. Michelle, I remember your suggestion about the numbing cream for the nuclear medicine injections. It seemed to have never occurred to the doctors to use this. I think I'll be getting the Neulasta shot so am buying the Claritin, and the vitamins as well.
Jan, you could never overwhelm me. I actually do feel a lot better about dealing with chemo now. What I feel I need is information, not going into the process completely ignorant and just submitting to it.
I had melanoma in January on my right arm and am going tomorrow to have the borders of the scar biopsied so am hoping for good news there. I haven't worried about that much, I trust my dermatologist so much. He's truly a wonderful man.
Enough early morning ramblings.
All the best to each of you,

Janie
 
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mhall6252 replied to vajanie's response:
Good luck with that skin biopsy, Janie! Sending positive thoughts for benign results. You've certainly got enough on your plate right now!!!

Hugs,
Michelle
Michelle
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!
 
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jenna291 replied to mhall6252's response:
Hi Janie,
I am with the others in sending you well wishes thru your chemo, and echoing just how important hydration is. I tolerated green tea, juices and melons very well. I had the same exact chemo as Michelle. I also became a big fan of my mom's chicken soup (I had infusions every 2 weeks and she would make a big batch). It had nutrition I needed plus liquids.
I had no problem either with protein as I ate an occasional burger and chicken, particularly when I moved into the second week after a treatment because my stomach could tolerate more then and I ate whatever I could. I also drank "ensure" or "boost" every day for the added vitamins. It is whatever you can tolerate and everyone is so different.
We are always here with any and all questions! Nothing is off limits. This is a great place for info, to laugh, vent, whatever you need.
Wishing you much good luck and await your updates ~
Jenna
 
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vajanie replied to jenna291's response:
Hi,

Just wanted to tell everyone, before I start tomorrow on my chemo adventure, how very much I appreciate all of you. I've taken your advice on chemo very seriously and have stocked up on bland foods and juices, got my notebook and calendar and I'm ready to go tomorrow and get this done. I also got my real post-mastectomy bras and my real prosthesis. I feel so much better about wearing my clothes now.
I'm also very glad that here I don't have to be MISS PERKY PANTS, tap dancing through chemo with a big smile on my face all the time. I know that I can do this but I know too that it's ok to have a down day if I'm feeling low, as long as I don't stay there.
Can anyone tell me if you've used sea bands or ginger tea for nausea? My niece recommended these to me and I'm willing to try anything that might help. Also, wondered if anyone had worsening osteoporosis with chemo. Don't know if I've mentioned that my drugs will be Cytoxan and Taxotere.


All the best to all of you,

Janie

Janie
 
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vajanie replied to vajanie's response:
Michelle,

Forgot to add that my melanoma margins were just fine. Good news there, and my dermatologist, who I just love, gave me two big hugs. He sat on his stool in the examining room and looked right in my eyes and said he wanted to know how I felt about my breast cancer. I immediately began weeping and he was giving me big wads of gauze pads because he was out of tissues. I got myself under control and we talked for quite awhile.
I hope you're still doing well with the new drug and now side effects.

Janie
 
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mhall6252 replied to vajanie's response:
Janie - your dermatologist sounds like a very compassionate doctor - I am glad he was able to give you good news about your melanoma margins, and I'm so happy that he gave you an opportunity to release your feelings. It's so important to not keep things bottled up as we go through the trauma of this diagnosis.

Maybe you can visit him and give him a cute box of tissues...LOL!

Good luck tomorrow. You are well-prepared and you'll be surprised at how the anticipation is so much worse than the first treatment.

I hope you are drinking 96 ounces today!!!

Hugs,
Michelle
Michelle
Read my blog at www.mch-breastcancer.blogspot.com
Smile and the world smiles with you!


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