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WhoaThere's picture
WhoaThere
Posts: 24
Joined: Jul 2014

This is my first time posting on ANYTHING, so I hope I can figure out how to reply, etc.  I am WhoaThere in the chat room (have no idea why I chose that except I had not slept at all that night) but my real name is Denise.  I was diagnosed with TNBC on May 14.  I had had a lump in my left breast for years (13 or 14) that had been biopsied and carefully mammogrammed.  In January, I began to have a bit of breast pain. and I was told, once again, that nothing had changed and it was still a benign fibroadenoma.  This time, though, I felt it was different.  I had it taken out 3 days later and it was IDC.  (Look at me using those abbreviations!).  Because the surgeon thought she was taking out something benign, the tumor margin was not adequate.  Went back in and took an additional margin and 8 lymph nodes.  I have no lymph node involvement and no distant mets.  But because my original tumor size was 2.2 cm, I am classified as Stage II.   I have had some lymphedema and my armpit is not human flesh anymore, but I had some lymphedema therapy and my husband and I do massage at home that helps somewhat.  I have a small pillow that has been helpful in propping sore areas, as well as keeping seat belts off my breast.  My port was installed July 15th on the opposite side and it has caused some difficulty that I don't have a "good side" to lay on.  The interventional radiologist who installed my port was adamant about not putting it on the same saide as my cancer, though not sure why.  I started chemo the next day, July 16th.  I am taking Taxotere and Cyclophosphamide, 4 doses, each three weeks apart.  Then I will be doing radiation.  I have had several nasty side effects already from the chemo.  The first two days, I had a pounding headache, red face and chest.  My blood pressure was up (167/76) when I took my chemo, nerves I guess.  They gave me Ativan in my chemo drugs.  The stuff knocked me out for a whole day.  By the time I realized my blood pressure was still up a couple of days had gone by.  Called my onc in the early morning and he told me to take a Narcon to lower it until the pharmacy opened and he put me on Lisanopril.  This has relieved my headache and some of the redness and my blood pressure is down.  But, I think the combination of the chemo drugs and narcotics has caused my new main problem - constipation.  Never, ever have I been so constipated in my life.  I usually go the other way and have always been "digestive sensitive."  Took Dulcolax and another softener that my pharmacist gave me.  Still clogged and not sure what to eat to not make it worse.  And don't feel much like eating anyway, but am sure that is causing a bit of my queasiness.  Have also had leg and foot pain from the Neulasta and have taken Tylenol for that.  When I came into the chat room last night, I was kind of panicking and felt overwhelmed and alone.  I want to say thank you to everyone who replied to my questions.  It is such a relief to have a place to talk about this stuff that doesnt feel like "complaining."  Thank you, thank you for the support.

 

camul's picture
camul
Posts: 2135
Joined: Dec 2010

This is a good site to come to. We have all been there, or for some of us are here with recurrences. I have found the men and women on here to be very supportive. It is a great place to vent as well as to help others. From time to time we have been able to get together and meet in person which is amazing to put a face to those we have been on line with for years.
There are nurses who have given so mch as they are seeing it from both the patient and medical side.
About 19 of us just got together in San Juan Capistrano last week and it was so nice. I learned more about lymphodema
as a couple were there with sleaves!
Hopefully they will be able to help you more with that aspect. I am so sorry that you have to be here, yet glad you found us and happy that you were diligent with the doctors taking your tumor out! Most of us have learned thru experience that if something doesnt feel right , it most likely isnt and we have to be our own best advocate.
Feel free to vent all you want.
It seems like night time is usually when I hit a panic mode, and when that happens and I vent or post, I feel so much better just sharing with people I know have been here and understand.
Hugs to you and keep posting. If you have questions, there is usualy someone who has been there and we are all willing to share.
Carol

Pixie Dust's picture
Pixie Dust
Posts: 289
Joined: Jan 2014

Hello Denise, welcome to CSN. This is a nice website to be on for support. I am kindly a newcomer also. Joined in January. Sorry to hear of your DX. Their are members on here I think as long as 15yrs. or more. Alot of members on here can give you great information. If you need to ask a question about anything just post it on the discussion board and you should get alot of replys. Also, the chat room is nice also. I met alot of great people here on CSN. Sorry about your DX, but welcome to CSN.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

You are not complaining - you have been put through a lot!!!

First, I can guess why you can't have the port on the cancer side.  Radiation can really do a number on circulation an it is much, much safer to have the port on the unaffected side.  You need that port and this will ensure less complications.

Below are a couple of references about side effects and how to handle them.  The blood pressure issue sounds as if it may have been preexisting?  It is crucial that you take care of it now, as you certainly don't want to risk having a stroke while getting these powerful medications. 

As to constipation...sigh.  I think we all have that problem with the drugs, etc.  For me, 8 oz of prune juice helps a lot.  Sometimes I also take those metamucil capsules but my problem seems more related to motility and bulking the stool can make that worse.  Hydration is so important.  I was just released from the hospital and one benefit is that I realized that I have been dehydrated.  By having a "keep open" rate of just 75 ml/hr (equivalent to one 8 oz cup of water every 3 hrs), I had a much easier time with stools and my BUN (test to analyze kidney function) was normal for the first time in awhile.  I have also taken miralax and it also helps, but prune juice works best for me.  Dulcolax gives me horrible cramps. 

Here is MB's famous Power Pudding recipe, which is also awesome:

2 cups pitted prunes
1 cup applesauce
1 cup Bran Cereal
enough prune juice to make pudding consistency

My chemo nurse suggested tylenol arthritis to give longer coverage with the neulasta pain.  I didn't have that pain.  I did have the "serum sickness" type reaction: flushing, nausea, vomiting, edema (but no headache).  I have treated this by adding an antihsitamine (claritin) a few days before and after.  I also use the ativan for a couple of days and just stay knocked out to get through it (suggested by my onc and chemo nurse).

I had no appetite for quite a few days after chemo and the dietician read me the riot act.  She said I had to now view food as medicine and at least drink 2 Ensures a day.  As much as I detest them, I think they really helped because it was an easy way to get protein so I didn't get so debilitated and the potassium, etc in them kept me from being soooo weak.

Remember all of this is temporary and try and stick with it by managing these side effects by discussing them often with your healthcare team.  The squeaky wheel gets the grease!

Lastly, just so you know, I had Stage 3 IDC with 4 nodes.  I have been religious about treatments and I am here to say that being adherent has kept me alive.  I have been 27 years!  I have been Stage 4 for 9 years now, but, I stick with the treatments and I believe that that is part of why I have been here so long!

Good luck and gentle (((hugs)))!!!  And welcome!!!!

http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx#.U8v5bFJOWP8

http://chemocare.com/chemotherapy/drug-info/adriamycin.aspx#.U8v5uVJOWP8

WhoaThere's picture
WhoaThere
Posts: 24
Joined: Jul 2014

Thank you so much for all the good advice.  I don't have a dietician and I have been at a loss as to what to eat and when to eat it.  Yesterday's problem was thrush in my mouth and throat.  Am taking fluconazole and it has helped a little, as well as rinses with baking soda and salt.  I also developed a low grade fever yesterday which made me feel as if i had the flu when combined with the Neulasta aches, which have been epic.  Didn't get to the 100.5 mark which would have signaled hospital visit, but I could barely get out of bed yesterday.  My temp tends to be low (97.1) and I was at 99.5 most of the day.  Please tell me your body adjusts.  That you have survived so long with this evil disease brings me hope. 

Puffin2014's picture
Puffin2014
Posts: 202
Joined: Jun 2014

Missed you in the chat room last night, now I know why.

It does get better. I ran a temp of 99.4 all day yesterday too and I'm sure I was dehydrated from the diarrhea. feeling much better this morning, head feels clearer, so far no diarrhea. I tried a hard boiled egg and a slice of white toast and am sipping my gingerale - need to get my fluid intake back up there. Someone suggested watermelon so Lew went and bought me a chunk to try midmorning.

My chemo book from my onc has an index of side effects and what to do for them. Sorry about the thrush, here's what the page says to do when your mouth is sore:

choose foods that are moist, soft and easy to chew or swallow: cooked cereal, mashed potatoes, scrambed eggs

Use blender to puree cooked foods so they're easier to eat, To help avoid infection, be sure to wash all blender parts b4 and after using them

Take small bites of food, chew slowly, sip liquids while you eat

soften food with gravy, sauces, broth, yogurt or other liquids

eat foods that are cool or at room temp, You may find that warm and hot foods hurt your mouth or throat

suck on ice chips or popsicles, these can relieve mouth pain

Foods That are Easy on a Sore Mouth

Main meals: baby food, cooked refined cereals, cottage cheese, boiled or scrambled eggs, mac and cheese, mashed potatoes, pureed cooked foods, soups

Sweets: custards, pureedor baby food fruits, gelatin, ice cream, milkshakes, puddings, smoothies, bananas, applesauce, vanilla or plain yogurt

 

Hang in there, this too shall pass

WhoaThere's picture
WhoaThere
Posts: 24
Joined: Jul 2014

Did manage to eat today.  had a frozen entree with meat loaf and mashed potatoes cooled all the way down.  Still was rough going but i think all the liquid diet wasnt sustaining me somehow.  So now I'm digesting and hoping for the best.  So sorry about your temp.  Don't know about you but just a degree or two makes me feel as if I've been run over by a train.  My onc nurse told me to take Tylenol and that kept it down.  No fever so far today and I hope the same for you.  Yes, hydrate!! I have been doing good with that part, it's the solids i need some help on.  Still have the flu-like pains from my friend, Neulasta but i think i can endure that.  Just need my digestive system to settle down.  Have been going frequently today i believe due to being stopped up previously.  Wish I had a shopper who could run out for me, but husband is working.  Am more glad than ever to have human contact on this website.  You are a champion, Puffin!

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

There should be a dietician associated with wherever you are receiving chemo. Ask your chemo nurse if there is one that you can speak with. Also, I forgot to mention this. If and when you have diarrhea, only drink the low fiber Ensure type drinks (<1 gm  fiber).

I had a bear of a time with thrush. It just kept coming back and food tasted terrible. Finally, my onc prescribed daily nystatin and MuGard rinses. Those were yuck, but no more thrush. MuGard coats your oral linings to allow them to heal. I didn't believe it would help with thrush because it is primarily used for mouth sores. But it worked!  Supposedly, it is like a liquid bandaid that gives your mouth a chance to heal. Both are prescription. 

I did end up with temp of 101,2 and in ER with white blood count <1. Many daily injections of Neupogen, antibiotics, etc.  and I was back home. After that, I received neulasta and was happy to do so. 

But I did have trouble with low grade fever for many days after chemo. It was then I discovered Vietnamese pho (soup).  I order the kind with meat, but don't eat the meat. I add lime and a few mint leaves and a pinch of onions. I never eat bean sprouts (loaded with bacteria)  and I boil the soup. I also drink a lot of ginger ale and really like Reeds, which comes in a bottle and has no high fructose corn syrup. Hard to find but Winn Dixie has it here.   Starbucks new ginger ale tastes very similar and also contains no HF corn syrup. A Grande is 100 calories.

Puffin2014's picture
Puffin2014
Posts: 202
Joined: Jun 2014

It was good talking to you in the chat room last night, I'm glad to see you found the Discussion Forum too. The prune juice suggestion is a good one, it works for me too, sorry I forgot to mention that last night. Hopefully when you get that problem straightened out you'll feel better able to handle the other issues.

 

I know what you mean about not having a good side to lay on, same here, incisions on the left and sore port on the right, and my left shoulder is still sore from my rotator cuff surgery 5 weeks prior to my breast surgery. That means lying on my back, which means big time snoring. Small throw pillows from the couch have helped, sometimes just to rest my arms on, and with their support I can sometimes rotate a bit onto my port side.

A friend suggested I try sipping on gingerale, as well as water, it doesn't have caffeine so won't be dehydrating. I'm sending Lew off to the grocery store to get some, along with some vanilla ice cream. Hoping an ice cream smoothie will taste better than one with plain milk.

See you in the chat room.

 

WhoaThere's picture
WhoaThere
Posts: 24
Joined: Jul 2014

I loved talking to you also.  Actually, I think you kept me from having an all-out anxiety attack during my first totally sleepless night.  I drink the gingerale too and it really helps.  It's not too sweet like other soft drinks or even juice.  I have also done peppermint tea which seems to help.  I am overwhelmed at just hearing that you had rotator cuff surgery along with the other.  You are one tough momma and inspirational!

 

Puffin2014's picture
Puffin2014
Posts: 202
Joined: Jun 2014

Thank you for your encouraging words, I didn't feel like a tough momma yesterday, that diarrhea really zapped me. but got through the whole nite without any and this morning I feel a bit better, think I might be up for a hard boiled egg.

Have things "loosened up" for you yet?

Puffin2014's picture
Puffin2014
Posts: 202
Joined: Jun 2014

Bad storms moved through last night so we had to turn the internet off and couldn't join you in the chat room, I read through the evening conversation though, sounds like your GI problem is starting to resolve, that's good. Selena's departure makes me sad, and scared. These people become our rocks, how can they just be forced off?

I called the Dr yesterday and they had me come in, labs OK, I'm not dehydrated, but looks like the chemo has messed up my diverticuli so she started me on the cipro/flagyl routine for the next 10 days. It works, but I hate it, especially the flagyl, it has such a nasty aftertaste it makes me gag. No diarrhea all nite and no pain in my legs so that's good.

I ate 2 scrambled eggs and a piece of toast for breakfast, tasted good but filled me up

Lew just helped me shower and it feels good to be cleaned up

I'm using my hiking stick to walk around the house, don't trust my balance or my strength, feels like I'm walking through sludge. Good thing this recliner is comfortable, I'm spending a lot of time in it.

Hope your days continue to get better.

disneyfan2008
Posts: 5504
Joined: Oct 2010

Welcome Denise...BTW what a great name.

 

Thinking of you...

Denise W.

treecy1106's picture
treecy1106
Posts: 149
Joined: Apr 2011

Welcome TNBC SISTA......As far as treatment...I was a stage 2A as well. I was given Adriamyacin and Cytoxin together every other week 4 treatments and then Taxol every other week 4 treatments.

Ask your oncologist what is the protocol treatment for Triple Negative BC and let him or her know this is the standard from Sloan Kettering In NYC. I am just curious about your treament. All Dr's do things differently. 

With that being said, I would take Claritan for bone pain. Ask if you can take that.

I also made a drink in the morning with vanilla ORGAIN (an organic protein drink) and green vibrance (powder) in it. Good for the body and builds a strong immune system.

You need to drink at least 2 liters of water while in treatment.

Also if you are constipated...drink Calm at night. You can get it in the health food store. 

You can also take "Cleanse More" by Renew. Its all natural. Take one capsule the first night and then 2 every night after.

 

Let me know if I can be of any help! OXOXO

Patrice

sweetvickid's picture
sweetvickid
Posts: 448
Joined: Nov 2009

Welcome...sorry you have to join our club but glad you found us.  I am also a triple negative.  Diagnosed November 2009 and still plugging away at life.  Never consitpated in my life until chemo and like you I was prone to diarrhea prior.  Best thing I found was what a nursing home nurse told me to try.  Take a cup of prune juice and add a tablespoon of real butter to it and heat it up.  I would start doing this two days before my next chemo and I wouldn't have constipation.

Unfortunately to others outside our circle we are complaining.  But we know it isn't...you just need someone to talk to that can relate to what you are going thru.  On this board we can say been there , done that, and didn't even get a crappy t-shirt!

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