Starting Treatment

LouisaP

I'm going to start chemo next week. AC. I have 2 malignant tumors & 1 benign in my RT breast. I am pos,pos,neg. The tumors are sort of large so they are doing chemo first, then Taxol, then surgery & radiation. When we made the plan the 3rd tumor hadn't been biopsied yet. Now I wonder since it turned out to be malignant if that would change anything. They were planning on doing a lumpectomy, but , now I wonder since the new biopsy report. I better call the Dr tomorrow. They said they give a lot of anti emetics with the chemo so I should be ok, plus I have compazine at home to take also.

 

I had the most awful time with my port being put in & I'm not going to have that surgeon do my surgery. It took 8 tries to get my IV in. That's really insane. Then I wake up from surgery with pain in my neck. I keep asking nurse whats wrong with my neck. She wouldn't answer me. Finally she said they had some trouble. Then surgeon comes in & I ask what's wrong with my neck. he made some joke about now I have a fat neck or something, whatever he said it wasn't funny to me. Then I asked AGAIN & he said that first they tried on my left side but it didn't work, then they put it in my right side but had to put catheter in my neck. I still couldn't get an answer why. I still don't know. But, now when I went to see the infusion nurse to get info about next week, she said she didn't like how my neck looked & got the head nurse. She said it's too swollen & I need to get an ultrasound tomorrow to see if I have a blood clot. They couldn't believe how bruised I am. My whole area from under chin is all black & blue. As is where they tried 1st port & where port is. Has anyone had their port in their neck? The catheter is hard & kinda makes the vein look like it's sticking out.

 

Since things are going so bad, I'm worried about starting chemo because I didn't get a 2nd opinion. I'd have to go to a larger town an hour away & if I was feeling sick it would be hard to drive an hour as compared to less than 15. Also the navigator told me I'd be so weak from chemo that I wouldn't be able to drive my daughter to & from work the next day & it caused a lot of stress how shes going to get to work etc etc  well, today the infusion nurse say's that I won't be too sick the next day to drive her. So much confusion here I'm stressing out.

LouisaP

Maybe my comment was too long

Maybe my comment was too long since noone had anything to say. But I want to kniw if anyone has had the port cannula in their neck?  How about chemo first? The cancer isn't in my lymph nodes according to the tests I've had but they are large. I'm getting conflicting information.  Thanks.

cati0314

LouisaP said:

Maybe my comment was too long

Maybe my comment was too long since noone had anything to say. But I want to kniw if anyone has had the port cannula in their neck?  How about chemo first? The cancer isn't in my lymph nodes according to the tests I've had but they are large. I'm getting conflicting information.  Thanks.

Not too long

I'm so sorry for what they put you through!  I had chemo first as my tumor was very large.  It shrunk down from 6.2 to 1.5 cm before they did the surgery.  Prayers that you will be fine!  Let us know the results of the test.  We're here for you!

 

Sharon

Lilly9

cati0314 said:

Not too long

I'm so sorry for what they put you through!  I had chemo first as my tumor was very large.  It shrunk down from 6.2 to 1.5 cm before they did the surgery.  Prayers that you will be fine!  Let us know the results of the test.  We're here for you!

 

Sharon

First things first.   Get the

First things first.   Get the ultrasound on your neck.   Depending on what it shows should determine if you start chemo or not.   I had chemo before surgery as well.  My first treatment you wouldn't even have known I had it.  I felt fine and in fact I wondered if they'd actually given me the drugs!   The second one I was still good but my hair was falling out fast so I knew they really were giving me the meds.  After that I started experiencing other side effects - some worse than others.    Take it a day at a time and a treatment at a time.

desertgirl947

I had surgery first, knowing

I had surgery first, knowing radiation was a go but chemo depended on findings.  I did do chemo, eight infusions over sixteen weeks.  My port was put in about a month after my surgery.  It was a little below my collarbone.

Chemo was do-able.  I had mine on Mondays and was fine until about Thursday.  I was ok then, but for a few days I felt a little queasy and preferred to just stay home.  By Sundy, I was good.  That only happened with the AC.  The taxol did not make me queasy, but there were times when it was imposible to take a deep breath or catch my breath without coughing. If I paced myself,  that helped, as did taking an allergy pill the few days that were difficult.

About 5 days after my second infusion, my husband and I were still able to travel from CNY to eastern OH for my family reunion.  Ten days after I finished chemo, we were able to go down to outhern PA a few days and then on to southern MD for my class reunion.  

For some chemo does not keep them down.  Others struggle.  You probably won't know until you start.  At least here, you can get a variety of experiences, which is helpful.

LouisaP

Thanks. I got my neck

Thanks. I got my neck ultrasound so no problem there just black & blue swelling & pain. I am starting chemo Thursday.  I'll have to see how it goes. I'm getting them every 3 weeks because I'm anemic. I may be getting iron transfusion with the chemo or neulasta. Ill get 4 chemo treatments then 22 weeks of taxol. I'm hoping the 2 tumors shrink drastically.  I'm going to a support group Tuesday. But im very alone. Im already on meds for depression & on disability for chronic pain & 2 failed back fusions. So I'm not working & don't have anything to do with my time. I know those things are opposite of how to feel good which is needed during treatment.  No one will be stopping by to say hello or go out to eat with. My 2 good friends live an hour & a half and farther. I'm just worried I'll make it worse by spending so much time in my room. I do live with my daughter & young grandson. She already does a lot because of my pain problems. 

GlowMore

Confused**

Hi Louisa.... it sounds like you had a terrible time with the port surgery.  I've never heard of a port in the neck but all things are possible.  Mine was under my right collar bone.  Really sorry to hear you are having all these problems because you are under enough stress as it is....but just try to take it a day at a time and hang in there if you can.   Maybe the car situation is  not as important right now as your health....perhaps someone else can be found to help your daughter get to her job...and this is a time for you to be good to yourself for sure.   Prayers for good results and please keep posting and let us know how you are doing.

 

LouisaP

GlowMore said:

Confused**

Hi Louisa.... it sounds like you had a terrible time with the port surgery.  I've never heard of a port in the neck but all things are possible.  Mine was under my right collar bone.  Really sorry to hear you are having all these problems because you are under enough stress as it is....but just try to take it a day at a time and hang in there if you can.   Maybe the car situation is  not as important right now as your health....perhaps someone else can be found to help your daughter get to her job...and this is a time for you to be good to yourself for sure.   Prayers for good results and please keep posting and let us know how you are doing.

 

The actual port is by my

The actual port is by my collarbone. The tube thats in your vein is usually in your chest.  He had to put mine in a neck vein. So now that vein bulges out & it's hard because it has the tubing in it. 

RozHopkins

So sounds like port is in

So sounds like port is in roughly in the normal collar bone area but the tube is higher.  That sounds ok as long as it works.  Chemo.....  Went quite well for me, I could drive there and back no problem, however, when tiredness hits please rest.  You will need it and you like me will be able to do so as I am at home and don't work.  We are lucky that we can.  I needed a lot of sleep day and night.  Hair comes out generally just before second treatment.  Just get it all off before or a first sign of losing and get yourself some hats/scarves or wig.  You can get some really nice ones on line on headcover.com and other siites.  You will loose weight at first as appetite usually goes.  Eat fruit, yogurt, anything that you can either force down or zingy to taste.  Smoothies are good for you and easy to stomach.  Freshens the mouth which can get a metallic taste with chemo.  Mouth sores are common, rinse out daily several times at least with salted water, it will help.  Don't panic if your nails go nasty to the point of dropping off.  SORRY THESE THINGS SOUND AWFUL.  It's ok again normal.  They will grow back, as will body hair later.  Hair on the scalp often comes back curly and later goes back to normal.     I honestly never really felt sick, they feed anti nausea meds just before chemo and they are really amazing.  Drink water, as they always say.....    Suck on fruity candy.  Bad food won't do any harm at this time rather than not eat at all, you will only feel like eating small amounts in any case.  Fatigue is chronic for some and aches and pains set in for some too.

 

if you are on an antidepressent make sure there is no interaction to any anti Cancer drugs after treatments.  There are many which are safe and they will guide you.  Cymbalta now has a generic and is wonderful for aches and pain management as well as depression.    Trial and error.  Effexor, or its generic is an antidepressant plus helps control hot flashes after chemo.  Tamoxifen can sometimes make life unbearable with hot flashes and this medicine did help.  Again trial and error, everyone is different.

 

You can always talk and chat to us any time on this site.  Are they no support groups where you live?  When  you feel a little better a gym perhaps with light exercise.  Yoga and Tai Chi is gentle.  Aquatic exercise very good at the local YMCAs etc.  Short walks.   Walking someone's little dog if you have a bad back.  I do Aquatic Class and Tai Chi especially directed to osteoarthritis.  Hope you can find something later down the line.

RozHopkins

In addition to my post I

In addition to my post I understand you have infilltrating Cancer, I had Infiltrating Lobular is this the case with you.  Hate to memtion this but you need to discuss the possibility of being in both sides as this Cancer often is.  Sometimes at the same time at different stages or the other side gets it later.  I was initially getting a lumpectomy like you but they found another questionable area in the same Breast only picked up on an MRI, so mastectomy.  So while having that done at the same time the plastic surgeon reduced my other healthy side to match reconstruction of Cancer Breast.  They automatically send any material taken away just in case any early signs not seen even in the healthy breast..  There was pre cancer cells there so had the second mastectomy.  Inilltrating lobular is not found on yearly mammograms.  When a lump comes it can be the first sign.  I just wanted to give you the heads up to make sure yours is t the same as mine for you to ask more questions.  

LouisaP

RozHopkins said:

In addition to my post I

In addition to my post I understand you have infilltrating Cancer, I had Infiltrating Lobular is this the case with you.  Hate to memtion this but you need to discuss the possibility of being in both sides as this Cancer often is.  Sometimes at the same time at different stages or the other side gets it later.  I was initially getting a lumpectomy like you but they found another questionable area in the same Breast only picked up on an MRI, so mastectomy.  So while having that done at the same time the plastic surgeon reduced my other healthy side to match reconstruction of Cancer Breast.  They automatically send any material taken away just in case any early signs not seen even in the healthy breast..  There was pre cancer cells there so had the second mastectomy.  Inilltrating lobular is not found on yearly mammograms.  When a lump comes it can be the first sign.  I just wanted to give you the heads up to make sure yours is t the same as mine for you to ask more questions.  

Well, I had my first chemo.

Well, I had my first chemo. AC. But my port has a kink & I have to get it redone!!! I don't know when. So blood tests, chemo & next day more antiemetic went in my hands. Then I went for a dye test on port & it only works if I twist my head & neck up & to the left lol. Not comfortable. Roz I already am on Effexor for depression. It didn't help my menopause flashes. I'm on a med similar to Cymbalta for my neuropathy.  Gabapentin. The chemo waa ok. Just tired. But I'll be getting 3 Iron IV's the next few weeks. That should help.  My iron's been low already before chemo

II've asked the Dr a bunch of times about other breast but MRI is all clear. I swear with this one treatment the tumors feel smaller. I doubt it but they really do. 

VickiSam

LouisaP said:

Well, I had my first chemo.

Well, I had my first chemo. AC. But my port has a kink & I have to get it redone!!! I don't know when. So blood tests, chemo & next day more antiemetic went in my hands. Then I went for a dye test on port & it only works if I twist my head & neck up & to the left lol. Not comfortable. Roz I already am on Effexor for depression. It didn't help my menopause flashes. I'm on a med similar to Cymbalta for my neuropathy.  Gabapentin. The chemo waa ok. Just tired. But I'll be getting 3 Iron IV's the next few weeks. That should help.  My iron's been low already before chemo

II've asked the Dr a bunch of times about other breast but MRI is all clear. I swear with this one treatment the tumors feel smaller. I doubt it but they really do. 

Louisa ..I am so sorry that you find yourself

in need of another procedure, additional travel time as well as recovery.  Difficult times for you = gosh, I am so sorry.

Please speak with the Social worker at your Hospital - check into any rides available to you, getting you to and from your chemo sessions - as they are far away.   Also, maybe there is a support group locally ?  Services available for you ? 

ACS has a telephone to help get you started

PROGRAMS AND SERVICES IN YOUR AREA

 

The American Cancer Society has many programs and services to help you understand cancer, get practical help like rides to treatment or a place to stay, and find emotional support. We can also connect you to valuable resources in your community. Enter your postal code below or call us at 1-800-227-2345 to find help in your area.

 

I hope this helps in some small way.

Vicki Sam

 

GlowMore

LouisaP said:

Well, I had my first chemo.

Well, I had my first chemo. AC. But my port has a kink & I have to get it redone!!! I don't know when. So blood tests, chemo & next day more antiemetic went in my hands. Then I went for a dye test on port & it only works if I twist my head & neck up & to the left lol. Not comfortable. Roz I already am on Effexor for depression. It didn't help my menopause flashes. I'm on a med similar to Cymbalta for my neuropathy.  Gabapentin. The chemo waa ok. Just tired. But I'll be getting 3 Iron IV's the next few weeks. That should help.  My iron's been low already before chemo

II've asked the Dr a bunch of times about other breast but MRI is all clear. I swear with this one treatment the tumors feel smaller. I doubt it but they really do. 

Oh Golly*

Very sorry to hear you have to get the port redone.........keep us informed and we are all sending you good thoughts for good outcome .......... love your great attitude about the tumors feeling smaller ***      ........You Can Do This ! ! !        Prayers for Strength & Courage.........  xxoo  Glo