Sept 2012 chemo

Good morning!

Sparky - after a few weeks my port felt fine just had some left over bruising.  Now I hardly ever notice its there, I even sleep on my right side (where mine is) without discomfort.  Are you near Gatlinburg?  I love that area of the country!

Cherioo - my head feels fine now.  I think from the shaving and continued hair loss it had to toughen up. 

Whenlife - yes I am going to follow up with my MO on Friday regarding the grade 3 comment.  It has been in my head for awhile and now with the new genetic reports it has me wondering.  Mine was so aggressive in the path report my mind was spinning during the first consultation anyway.  My path slide showed my cell mitosis as >30 times normal.   

Hello everyone,

Positive vibes to everyone who had chemo over the last few days and hope your side effects are minimal!

Sorry to be dense, and this is a question I've been wanting to ask for a while, but given all the chat about ports, needles, creams and so on...what exactly is a port?  I have something totally different--a PICC line (or peripherally inserted central catheter).  There's a tiny tube that goes in to a vein mid way up the top of my good arm.  It snakes up that vein and ends somewhere in my chest, near my heart.  It's secured in place with a special type of gripper band aid and it has a clip towards the end to shut the tube off and a screw cap at the very bottom.  When I have chemo, they unscrew the cap and plug me in to either the IV or the syringe for the epirubicin.  I get the line flushed once a week with saline and the dressing is changed and they also draw blood from the line.  No needles, no pain, no nothing.  When not in use, they just put a big square dressing over it, and it took about 30 minutes for the radiologist to put in under local anaesthetic.  Didn't hurt at all afterwards.  I wonder why they use a completely different system in the UK than the US?

Cindi, Landsend is a way from here, all distances in the UK are small compared to the US.

On the subject of food again, what's the general view on here about coffee?  All the research seems contradictory.  I started drinking gallons of green tea when I got my diagnosis because there does seem to be evidence that it helps fight cancer.  Then I read that you shouldn't drink it on chemo because it helps the cancer cells repair themselves.  I'll take it up again after I've finished treatment.  The only things that I have been told not to eat are soft cheeses/unpasteurised foods, shellfish, under-cooked meats and nothing from any road side kiosks, burger vans or similar.  My oncologist said to use my common sense and eat a healthy balanced diet with lots of fruit and vegetables, which is what I do anyway.

English Rose -I have a power port too.  It's about 3 inches below the collar bone, about a 1 inch incision.  The device sits underneath the skin so to access it still requires a needle prick, hence the complaints about pain.  Sounds like somewhat similar approach, different location.  The port has some small tube that's threaded up through some vein that runs up over the collar bone and then down towards the heart (very uniformed general description).  I suspect it will leave a small scar in a less than ideal location.  I think you got the better end of the deal.

My doc told me a little coffee's ok, but to limit it and focus on liquids that are more hydrating.

Here's a question for you - are there sites like this that are familar to or targeted more towards the UK? 

butterfly14- Take the regular 24 hour Claritin now.  You want to have it in your system before you take the shot.  Hope the Claritin helps !!!

Kstillie - my SEs from AC and neulasta shot varied. The 1st Neulasta shot knocked me out for 2 days. I didn't have pain so much as fever which I took tylenol for and I could not get out of bed. I monitored my temp and took tylenol as needed and napped. I started moving around about day 6 after chemo. The Neulasta effects weren't as bad for me for all the following round but I still was not up to going for my walks until day 6 after chemo each time. My stomach SEs were bad the first time, not as bad the 2nd but I fasted for about 36 hours before the chemo and all chemo day which seemed to help my guts but I slept even before my Neulasta shot. The 3rd AC was the worst because I had started my period the day before so I just felt yucky in general. I didn't fast as much though I did on chemo day, just not before and after. Then I got another period nine days after chemo and that has been my last (chemopause). I dropped a bunch of weight that cycle because I could barely eat and my iron level dropped, duh, but it came back up by the time I was starting Taxol. Though I was crying in my MO's office before the 4th AC round, I did it and it actually wasn't as bad as that one with the periods. and I only fasted the day of chemo again. AC pretty much sucks but most can get through it if just barely...  

I limited my tea consumption during AC to just one cup of green in the morning - I didn't want a caffeine headache on top of other stuff! But I have been drinking a cup of black tea and a cup or two of green tea in the mornings with the Taxol. Kind of going from the chart here at least re green tea: http://foodforbreastcancer.com/articles/what-should-breast-cancer-patients-eat-during-taxol-(paclitaxel)-chemotherapy?

In case some of you haven't seen it, I'm copying this off the thread on this site "Things I Wish I Were Told When I Was Diagnosed with Cancer". It's so brilliant.

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

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English, thank you for posting. It is all so true.

@Patricia I don't think it worked. All it did was post a link to the pic, but I don't know if people can see it unless they are my Facebook friends. Anyway if you can see it it's a pic of me and my bestie on girls night out. I had on my Beyonce wig that night...lol

Went to Lookgood/Feelbetter Monday.  Nice group.  Good makeup.  Learned some.  Wish they had had eyebrow stencils.  They sell them on line, but they are ridiculously expensive.  It sounds like such a cheap easy thing to make, they should be free.  Anyway.  Didn't spend much time on anything but makeup.  Nice tips on wigs.  Have begun wearing mine although I still have hair--but cut so badly the wig looks better.  Feel mostly normal now.  Met with Oncologist.  She is reducing chemo by 20% to reduce fatigue.  Says it shoudn't make a difference in the curritive effect.  Oh well.  # 2 next Wed.  We are going to do SOMETHING FUN this weekend.  Don't know what yet.

Hugs Bearcub,  Hope no  SE. 

I'ts been a while since my last visit. Hope you are all doing ok and SEs not to bad. Just as I was sort of getting over being bald I have a new side effect and I really hope none of you get it. I have broken out in hives all over my scalp! Itchy, sore and looks awful. Googled it and it seems it happens sometimes on 2nd round, 2nd week og TC. Called nurse and was told to wash with baby shampoo and take Benadryl.



For the list I'm 42, 2 kids (9 and 11) and from Ontario Canada

I'ts been a while since my last visit. Hope you are all doing ok and SEs not to bad. Just as I was sort of getting over being bald I have a new side effect and I really hope none of you get it. I have broken out in hives all over my scalp! Itchy, sore and looks awful. Googled it and it seems it happens sometimes on 2nd round, 2nd week og TC. Called nurse and was told to wash with baby shampoo and take Benadryl.



For the list I'm 42, 2 kids (9 and 11) and from Ontario Canada

I'ts been a while since my last visit. Hope you are all doing ok and SEs not to bad. Just as I was sort of getting over being bald I have a new side effect and I really hope none of you get it. I have broken out in hives all over my scalp! Itchy, sore and looks awful. Googled it and it seems it happens sometimes on 2nd round, 2nd week og TC. Called nurse and was told to wash with baby shampoo and take Benadryl.



For the list I'm 42, 2 kids (9 and 11) and from Ontario Canada

I'ts been a while since my last visit. Hope you are all doing ok and SEs not to bad. Just as I was sort of getting over being bald I have a new side effect and I really hope none of you get it. I have broken out in hives all over my scalp! Itchy, sore and looks awful. Googled it and it seems it happens sometimes on 2nd round, 2nd week og TC. Called nurse and was told to wash with baby shampoo and take Benadryl.



For the list I'm 42, 2 kids (9 and 11) and from Ontario Canada

Thank you Cindi, I hope you have a great weekend, what kinds of things do you do down in Florida? I bet it's nice and warm. Our leaves are changing now, yellow and red, it is actually very pretty. Most of the flowers are gone from the frost.



I still have some eyebrows but am trying to memorize the position on my face...lol..they did show us how to measure at the LGFB.



Donna your pic can't be seen.



Neta I had a bit of the hives and itching after my 1st AC about 10 days in. I took benedryl and it worked well for me. I haven't had it since but just did my second AC today so I hope it doesn't happen again, it was pretty awful. Hope you feel better soon.