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Some stuff I wonder about

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

So Ive been reading and posting a bit to this board for about a week now, trying to adjust to my new life of a cancer person. Ughh, still seems so sad and unreal for me.

I am gearing up for my first hellish weekend, Friday Pre Op stuff, blood, EKG, whatever else, then Sunday, the dreaded Sentinel Node Dye injection, then Monday my surgery for Lumpectomy. Followed by recovery from surgery and waiting for more bad news from the pathology from the surgery.

But what Im wondering about, is as I read posts here, MOST seem to be from those either about to begin this horrific deal, as I am, and those that are post treatment, trying to regain their lives after chemo and rad.

What I dont see much of, is posts from those actually in the midst of chemo or radiation? My negative/cynical brain gets signals from that, that its because it is just SOOO Horrific, that once that starts, its so bad, that no one is able or willing to come back here and share the misery.

Thats why I was so interested in seeing Eleanor post after her first chemo. I really hope she can come back and post as she gets past the first few days, and how it all affects her. I have been waiting to hear back from Lucy something, but alas not a word. It worries me., (but about everything does these days)

So, who else here is mid treatment and can share your experiences, bad AND good, or at least how you have fared thru it so far.

I go to sleep scared, I wake up scared, seems fear has just taken over my otherwize happy life.

Thanks for putting up with my scardy cat ramblings here...

kacee999
Posts: 109
Joined: Oct 2012

I keep seeing your posts about this "horrific dye injection". OMG...where on earth did you get this???? I remember having the dye injected...it took about 2 minutes, they give you a quick numbing injection...it is a complete and total NON ISSUE!!!!! Do not get yourself all in a sweat about this! Frankly you'll be embarassed when you find out what a non-issue it really is. I promise!

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks kaceee, i know i am just a big PITA crybaby with all of this. I will be the first to allow the "i told you so" band wagon to roll over me if you are correct. It's just those few posts i have read, and a couple of people i have talked to that say it was more painful then child birth.

I'll try harder to cling to your experience being closer to what i experience.

kacee999
Posts: 109
Joined: Oct 2012

will explain to you in GREAT detail what they are going to do. For me, it even got a little silly...it was like yeah yeah yeah I know, okay whatever...go on...and they are wonderful professionals who are trained to deal with "scaredy cats" and rest their fears. Have some trust!

kacee999
Posts: 109
Joined: Oct 2012

You really need to have an adjustment in your attitude about this. You are approaching every single thing as if it is a potential bomb going off. This process is going to be long and complicated and if you get wound up about all the small stuff you're going to defeat yourself. This above all other times is a time to buck up and get through this in one piece...do what you have to do...get into business mode, get angry, whatever... Please don't defeat yourself with agonizing about the small stuff....

Rague
Posts: 3310
Joined: Aug 2009

But when I was - I posted often throughout my 4 DD A/C, mast., 12 weekly Taxol and 25 rads. That's true of most of us who have been 'around' for a while. I am not trying to "regain" my life - I never lost my 'life'! Yes, for a while it was a bit difffent but definately not 'lost'.

To think that the only ones that can give you info on how anything effects one is thosse actively on TX is so wrong! We have been there/done that - not all the same TXs as we are each unique and our cancers are different. The way our Drs want to fight it is also different sometimes. In my case, for IBC my Drs wanted to do A/C then surgery followed by Taxol and rads (Femara forever) - most other IBCers I've seen here and other sites, have done 2 different chemos before surgery while I did one before and one after.

For me, A/C was 'easy'. Yes I lost most hair, lost appetite (Hubby had to call me several times a day to remind me to eat something), lost sense of taste and smell. 2 days after 2nd A/C I drove my first Powder Puff Mud Bog and got 2nd - got further around the course than Son did. I never had pain issues or any nausea. (I've been told that while there haven't been any studies done it, apparently in most cases how bad your nausea might be on chemo is related to how much 'morning sickness' you had - I had NONE with either Son or on chemo even though 1/2 way through Taxol I quit taking the anti-nausea meds.) Surgery was 2 weeks after last A/C and Taxol started 3 weeks after surgery. For me, Taxol was much worse than A/C - I was completely and utterly EXHAUSTED the entire 12 weeks and basically existed in bed or on couch in front of TV so I would have enough energy to do a few things with Hubby and Son. While on Taxol, I started having major problems keeping K (potassium) levels close to normal but mega doses of K took care of that and I do still have to suppliment my K all the time to stay in norm range. Of course I happened to do Taxol during the time I normally fight SAD anyway so that didn't help. Son took over all barn chores/horse care and Hubby took over all house and inside pets chores so I didn't have to do anything that I didn't want to or feel up to doing. I started rads 1 week after last Taxol and felt better every day.

I can assure you that I've been in just as many (Ibut different) traumatic experiences (if not more) than you have. It's how we choose to look at them. I have learned a lot more from what coould have been considered 'bad times' when happening than the 'good tiimes'.

I did everything I was offered to fight the IBC and it's getting close to 3 yrs post TX and I'm still riding NED (No Evidence of Disease) and do anything and everything I want to do. My 'quality of life' is not compromised at all - are there a few minor inconviencencs - yes like dealing with LE but doesn't keep me from living every day to it's utmost.

As I said - there are many who have 'been there/done that' in past times, does not mean that we do not know what it is to do TXs. We are each unique. We have a vast base for info - as all 's experiences were different. I chose to live in the 'sunshine' rather than the 'darkness' and YES it is a personal choice.

Winyan - The Power Within

Susan

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Susan

Sorry,i never meant to suggest that only those currently in treatment can be helpful. In fact i have read some very informative posts from those who are post treatment.

I was simply wondering why the balance of those who do post about their chemo experience, seems skewed towards the past tense.

I would just like to read a bit more about some that are in there treatments, to just sorta follow along, as a beacon for what i am about to go thru.

I did see something, encouraging from your comments. Even tho seemingly anecdotal, the relationship between pregnancy morning sickness and chemo nausea. I had the worlds easiest pregnancy No morning sickness at all, 9 very easy months. For me the hard part was the next 20 ish years of raising my very difficult son. Thankfully he is 26, moved out, works, lives a responsible life and our relationship is finally wonderful. So i will cling to the morning sickness correlation with some degree of encouragement, thank you for that

Barb A's picture
Barb A
Posts: 101
Joined: Jun 2009

Everyone is different in their experience with treatments. My opinion on why some don't post during treatment is because they are tired! The appointments, treatments, etc all take a toll and can cause fatigue.

I had an easy time with treatments. Not a lot of nausea and I seldom lose my appetite. Although that would be a good thing once in awhile! There was some aches and pains, but all the medical personnel I dealt with gave me advice for relieving some of it.

Try not to fear everything. Educate yourself and know how to handle the side effects if you have them. Keep humor and a positive attitude in mind and let others help you when you need it. Maybe some of the others at the same point in treatments could correspond with just you so you can compare notes and feel a bond with someone going through what you are.

Hang in there and come here when you need us!

Barb A

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I'm currently in chemo...Navelbine, 2 weeks on and 1 week off. I don't post much about my current chemo because it's really quite easy compared to the other chemo's I've done. I have a 'knot' in my esophagus almost immediately after infusion, and very mild diarrhea that evening.

The other reason I don't post much about the chemo, is that I'm stage IV. Newbies are already scared enough about 'what if it comes back'...they don't need my experience in their face making that fear worse. Although I should also say that the stage IV folks I know take this one day at a time...just like those who are stage I, II, or III. I think it's the only way to beat the beast.

Finally, it's much easier to answer when there is a specific question and when we know what your chemo regimen is. f you're getting TAC and want to know about diarrhea....I'm your girl. But if your question is about Taxol, I probably won't reply because I haven't done that.

I hope this helps.

Hugs,

Linda

base61ball
Posts: 127
Joined: Jun 2008

The first thing is to get a grip on your fear. It's natural to anticipate the worst scenario. The actual is usually totally different. I have been in treatment since July, 2010 and it isn't over yet. I have received many different types of chemo, each one with it's own side affects. In 2011 I had a double mastectomy with skin graft from my back. I've lost my hair 4 times. It grows back.

It all started in 2008 with a lumpectomy. I went two years without insurance and was unable to receive treatment due to $$ considerations, but during that time, I knew I had IBC but could do nothing about it until I moved home to Minnesota. By then, things were a little out of hand.

Your attitude is everything. There are medications for nausea - even some that you put under your tongue if you have trouble swallowing pills. You will be tired - that's part of it, but it's doable. I was determined NOT to have side affects. Not sure if that helped me or not, but it hasn't been anything I can't deal with. Use your doctor - don't be afraid to call if you are having problems. Join a support group so you can voice your fears with people who have been or are going through it. That will help. This website is invaluable for non judgemental assistance. It helped me a lot.

From a practical standpoint - I have a large pitcher that filters the water. You will need to stay hydrated and I've found tap water did not agree with me. I use it for everything from ice cubes to making coffee. That helps. I keep a 32 oz mug with water in it next to me at all times. I sip from it all day. Hydration is a key factor in your comfort.

Thank the good Lord that we are being treated in a time where technology is constantly coming up with new treatments. My doctor is fighting as hard as I am to beat this stupid disease. I had a "No evidence of disease" on my last PET in October. On December 17, I will have another. If I'm clear, I get a break. If not, I will continue to fight.

You can do this. You will get through it. Hugs to you.

Rague
Posts: 3310
Joined: Aug 2009

I'm bad about not remembering to mention getting plenty of fluid. For me, having a container of ice water or iced herb tea handy is a life long (well at least as long as I can remember) thing I've done. Has to have ice in it even during most of winter. Though I will sometimes have a warm cider or tea. SO even when I lost appetite on chemo, habit of so many years, always kicked in and I kept 'drinking' plenty.

WInyan - The Power Within

SUsan

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks guys, some of this is helpful and encouraging, I'll try to keep a good (well better anyway) thought.

I have seen quite a few posts regarding drinking water and hydration. I am a water drinker, by nature, always have been. I never drink soda or other beverages like that. I probably go thru a gallon a day. Think this is going to be helpful to me?

I'll still be looking on this forum for a few current in treatment, but do appreciate the experience of those that have been seen the road.

Can i ask a favor? Is there anyplace that has some list of all the abbreviations used here. They are a daunting foreign language to us first traveling this road

Thanks again to all

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I just sent you a private message on here with a link to an old post on here with every abbreviation that you might need. Just open your message, click on the link which says Abbreviation, and, voila..there they will be.

And, please try to relax and just take it one day at a time. Everything will be fine.

Megan

Rague
Posts: 3310
Joined: Aug 2009

It would help ones replying if you would fill out your 'profile' so we could see 'where you are'. All BC cancer is not the same.

If I remember correctly, I used IBC and LE. IBC is Inflammatory Breast Cancer - only between 1% and 5% of all breast cancer is IBC. It is the most aggressive form, especially when TN (triple negative) iis nvolved (negative for ER, PR and HER2). LE - LymphEdema - the fluid that build up in hand/arm/shoulder/chest because of the removal/damage of lymph nodes.

Certainly it's great to meet those who are your tage - but they are just that. Your stage - not onoes who have been past and can look back -nott dwell on the present. Tomaorrow is a new day!

Winyan = The Power Within

Susan

Eleanor1's picture
Eleanor1
Posts: 68
Joined: Sep 2012

Every person has different reaction, counting from my first chemo which was Weds. I am ok so far, very mild achy pain, very mild nausea, and I haven't taken any medications. Drinking lots of fluids and eating well for now...try not to over think, one day at a time and just go with the flow...this was my problem being on the medical field, I stressed out a lot ...be positive ....They said this weekend will be the peak of the side effects but if so, I will just go to sleep, take my meds and hope for the best...God is great !

CypressCynthia's picture
CypressCynthia
Posts: 3983
Joined: Oct 2009

No, please don't think that! If I don't post about my earlier experiences, it is only because it was a long time ago...lol. Getting hard to remember.

I had 4 nodes and a large tumor and had a mastectomy, chemo, radiation and tamoxifen. The first chemo hit me hard, but my oncology nurse helped me to find the right drug regimen to help with the adverse effects. I lost my hair and that was hard, but a small price to pay.

At the time, my daughter was just 4 and I could not face leaving her without a fight. I did everything that was asked of me and prayed that I would see her survive to age 12. That was all I felt I could ask for at the time.

Well, that was 25 years ago! Unfortunately, I did have a recurrence in 2009, but I am back in remission now.

BTW, I know I have been very blessed, but I have never stopped working (except the first month of chemo). I share that because I really did not feel that bad throughout.

My philosophy has always been to try and manage my side effects and not to change meds unless my side effects were critical ones. Sometimes, this can be like solving a puzzle: changing the time that I take a med can help, finding a med or therapy to help with a side effect, etc. Chemo was no fun, but it was very manageable and, for me, the other therapies have had relatively minor adverse effects. Radiation was a piece of cake for me. Good luck! And please let us know how you are doing.

P.S. My daughter turned 30 this past February :-).

txgal748
Posts: 2
Joined: Nov 2012

Diane,

The first thing my radiologist said to me after telling me my biopsy was positive for breast cancer was "you are going to be fine". She actually said this to me three times. My cancer was detected very early and all of the medical staff I dealt with between May and September had wonderful bedside manners and went out of their way to make unpleasant situations comfortable. The most painful part of the whole experience was the sentinal node biopsy, so take your pain pills and do the exercises the nurses will recommend to you. These are very important in keeping "cording" at bay. My breast did not hurt after surgery just my underarm.

Good Luck!

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I've found in all that I've been through, the anticipation is much worse that the reality. And I speak as someone who had rare complications every step of the way. We create these horrific scenarios in our minds, and while none of this is easy, somehow, we manage to get through and move onward.

Try to catch your breath. Tomorrow will be fine, and the surgery should be much less of an ordeal than you are anticipating.

I'll be thinking of you.

Alice

dianehelen's picture
dianehelen
Posts: 131
Joined: Nov 2012

Thanks Alice, i hear what you are saying and im trying

Now with this new wrinkle of this F*ing cold, just more stress to pile on ugh

Unhappy
Posts: 88
Joined: Dec 2012

I to had breast cancer with the option of a lumectomy but my fears took over.I could not sleep radiation cause even more fear .I wanted some one to talk to who had been through lumectomy and radiation but at that time I had not joint cancer survivors network .Therefore I decide to have a mastectomy instead of a lumectomy If I had had someone to talk my fears over with I may have went with the lumectomy.When they got my oncolgy report back after surgery it was stage 1 and not in the lyump nodes .A lot of my worries were in vane.But I know how you fell.they have you read so much that make one fear even worst but they want us to make a emformed decision.I never had to do radiation or chemo.like I had feared just got to take a pill for 5years.If I had of had a lumectomy I would have had to do radiation for 6 weeks I am happy with my chose Now I am wanting breast reconstrution.My prays are with.

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