Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

exbrnxgrl

Blair, I didn't mean to rub any differences in your face. My apologies. Yes, getting the job done is the most important thing. My point was that there seem to be vast differences across the nation in virtually every aspect of bc treatment. The medical center/ hospital I go to is only about 5 years old which probably accounts for the state of the infusion center. I hope that you haven't taken any offense. Caryn

BlairK

Dear exbrngrl - No offense taken whatsoever.  What you described for your infusion room is kind of what I had imagined for my wife.  Imagine my surprise yesterday.  I had wanted to sit next to my wife the whole time and keep her company but it simply was not possible.  The only thing that was nice to look at was the wall with the refrigerator magnet collection.  Anyway with the Benadryl, my wife was able to sleep for some stretches.  At least we know that it is 1 down and 3 to go as far as the chemo is concerned.  Then the herceptin treatments every three weeks after the four rounds of chemo will go a lot faster.  I sincerely hope you will be well and that your treatments will be effective with minimal side effects.

suzieq60

Blair - sounds like the room my DH had when he did chemo. When I did mine it was in a brand new centre - lots of space and privacy if you want it.

Interesting she only had the dex that morning. My onc gets you to start taking it the day before chemo.

Also, why didn't she get a port inserted. I think that would have been wise. 18 herceptin treatments in the hand is a lot.

It should take about 14 or 15 days for her hair to start to fall. I went and had a buzz cut when it did. It made it less traumatic.

Sue

suzieq60

Another note - tylenol might not  be strong enough for the leg pain - I had a prescription pain killer - Digesic we call it here.

dragonfly1

BlairK I'm so glad that all is going well so far:) I think of you and your wife often.

BlairK

susieq58 - My wife started dexamethasone the day before.  The port is up to my wife and her veins.

suzieq60

Blair - if she can manage without one, no need to do it. I now have a depression in my chest where it was. My original bs did a much bigger cut than needed - one of the reasons I sacked him

Cowgirl13

Susieq58, i too have a depression in my chest.  do you know what causes it?  I was kind of surprised.  do they cut something out?

thanks. 

Omaz

I have a little depression where the port was too,

orange1

re: the port - I did not have one - even though my Dr. suggested one.  Now my veins are ruined on that side - its very, very, difficult to start IVs.  Its been a problem when I've needed IVs since then (because other arm is off limits), but not insurmountable.   If I had to do it over, I still wouldn't have one - but just wanted warn you of a possible outcome.

AlaskaAngel

It is dependent upon the surgeon's skill with placement of the port, AND upon the individual's anatomy as to how it will turn out.

I have no "dent", but I do have a  faint but visible 1 1/4 inch x 1/4 inch scar there that shows if I wear a swimsuit or a U-shaped neckline that is low.

I was glad I had the port put in for sheer convenience for me and for the nurses. I kept mine in for years "just in case", as it is sometimes difficult to put one back in if that becomes necessary, but that also meant I had to have it flushed regularly. That was more convenient for me than many others because I was in a clinical trial that required blood draws every few months for years anyway.

A.A.

suzieq60

When I first went to see my new bs - the first thing she said to me was "Who put your port in".  After I got to know her better, I asked why she had asked me that, was it because it's a long scar and she said yes. I wished I had gone to her in the first place.

Judy67

BlairK - you are right about the Dexamethasone.  Had quite a bit of energy last night and trouble staying asleep for more than 1-2 hours at a time.  Guess I should have used the Lorazepam they gave me, but didn't want to unless I absolutely needed it.  Treatment was uneventful.  My tx center is like yours, only about 6 chairs, fairly close together with small side table by the chair and one tv.  Nurse has her desk there too and onc's office is just off the tx room so he came through several times just to check on us.  I liked the small, personal atmosphere.  Not too many patients today and only one there with tx as long as mine.  Benadryl given in premeds and so I got drowsy quickly but it wore off by end of tx and I could have driven myself home, in fact I went Christmas shopping right after we got back.  My husband drove me and brought me lunch and ate with me, but then I sent him home and told him to come back when tx scheduled to be over.  Feeling great right now, a little nervous waiting for SE's not knowing when or if I'll have them.  Good luck to your wife.  Judy

Anonymous

My place is five chairs, each with their own individual tv's on a long adjustable arm thing, and then 5 private rooms that can be curtained off (which makes me laugh because the nurses refuse to close them saying they have to be able to see the patients and the chemo going in, in case of a problem). Each of those rooms has a tv also. In each of the places, there would be room for one person. I only had my husband with me on the first one. After that, took myself.

All my steroids (decadron) were given via IV, before I received the chemo. I was up all night the first night. Nothing helped, including taking ambien. So...I just stayed up and got some work done. I don't think I received benadryl until I hit the herceptin every three weeks and then they start with a full dose, cut that in half if you do ok for the next time, and then eliminate it if all goes well. In my case, my se's were not anything that benadryl would help, so I don't get that now.

The port is a godsend to me. My veins are generally hard to find anyway.

Hope all continues to go well.

suzieq60

Wish we'd had TV's - I used to read or sleep Most rooms had 4 chairs in them, but you could curtain off your space - they are really big rooms. Plenty of room to have one or more visitors too. The place DH went to was a tiny room, everyone sitting literally right next to each other- it was horrible.

bluedasher

If exbrnxgrl's chemo room was the Ritz and blair's wife's is Motel 6, I guess mine was a Marriot Courtyard. Around 8 chemo chairs spaced around the room with plenty of space between them so one could have a visitor and two small rooms with beds for those who are very sick and need that. Some TVs mounted so each one could be seen by a few chairs but a lousy channel selection so not worth watching. I preferred to just use my laptop. The chemo chairs were all recliners, but on some the foot rest and recline action operated together. I preferred to get one of the chairs that allowed raising the foot rest to support my short legs while keeping the back upright for working with my laptop. If I got one of the others, I'd move the guest chair to use as a foot rest.

They also had a smaller overflow chem room for busy times with the chairs close together. I know at least one person who preferred that room because they could chat with the other patients. 

Of course, the best thing about either room was that the chemo nurses were all great - supportive, helpful, careful about their work, etc.

twoputter

You might want to have some ginger ale handy for your wife to drink.  I found it was about the only thing that tasted good after 3-4 days and the bad taste in your mouth begins. 

momofthree2011

Blair, I'm so glad your wife is doing fine. I had a port put in because my veins are so small. I loved it! I didn't have to get poked all the time. I don't have a depression but I do have a small scar. If I had to do it again I would make the same decision in having the port.

Take Care, 

 Debbie 

AmyIsStrong

I had three different chemo rooms. the first one was large with reclining chairs next to each other. There were straight-back chairs where room permitted, for family members, but often you could not get one and your family member could not be there with you.

Then midway through my TCH, the oncology office moved to a much larger facility. The chemo room was VERY large and all the recliners faced a large floor/ceiilng window (that looked out on traffic) and a few tvs mounted up on the wall.  There was lots of room around each chair (but no curtains) and family members could easily sit with you.

Then, for my last few Herceptins, my insurance changed and I had to go to a branch of the oncologist that was across state lines (too complicated too explain).  It was still close to my house.  It was a small office with a very small chemo room - almost like somebody's living room. Maybe about 6-8 recliners in a tight circle facing a tv in an entertainment center.  No chairs for family members at all, but they could sit next to you in one of the recliners if there was an empty one.

Having been to all three, I have to say that it really didn't make much difference.  I would have liked some curtains or privacy but only because if another patient was having a hard time, and crying or screaming, it really upset me very much to witness that person's pain. Otherwise, it didn't matter much.

BlairK - how is she doing today?

Amy
 

orange1

It seems like I had the Ritz - private rooms, recliner, chair for family members, own TV (which I never turned on) and hot blankets.  I hate inane TV - talk shows, etc.  for that reason alone I was happy to be in a room by myself so I didn't have to listen to others choices in TV.  Oh yeah - the best thing - the nurses were great - very caring.  It made a bad situation much easier to deal with.

suzieq60

We had warm blankets too - I liked that.

Merry Christmas everyone!!!

BlairK

As of today 12/23 morning my wife is still doing well.  There have not been any side effects yet except my wife has insomnia.  Yesterday, she took dexamethasone in the morning by mistake but it was no cause for concern.  She also finished her third Emend.  I had a colonoscopy yesterday with the prep the evening before.  One small polyp but everything seems to be OK.  Given I have read so many posts about side effects, I find it a bit strange but good that my wife has not yet experienced any.  I hope everyone has a Merry Christmas.

momofthree2011

Blair, Glad to hear your wife doesn't have any side effects. After my first treatment I had body aches, but no other problems after that.  I kept a log of which medication I had taken and wrote down the time. It was helpful to me because I would forget what time I had taken my meds

 Merry Christmas to you and your family!

 Debbie 

AlaskaAngel

Blairk,

There are people posting their experiences here who had treatment at different points in time. I'm delighted to hear that she is doing so well and think either Emend has made a major difference or perhaps made a major difference for some patients but not all. Anyway, her experience is very different from mine of 2002. Hope it continues throughout for you both!

A.A.

suzieq60

Blair - expect a steroid crash any time now. You do feel ok for the first couple of days after and then bamm. I had my tx on a Wednesday and on the Saturday I crashed big time. That's when the leg pain started. Any sign of anything, call the onc and get a prescription sent through.



The insomnia is caused by the dex - you usually get a lot of work done around the house in those times. Make sure she doesn't get constipated - she should be taking something gentle for that like sennacot.



((((((HUGS))))))))



Sue

BlairK

Susieq58 is spot on about the steroid crash.  My wife has been feeling sick all day.  It is now 12/24 at 8 PM and my wife has a fever ranging from 101.5 to 102,  The oncologist said that a fever 7-10 days after a chemo treatment is an emergency and could be caused by low white cell count - a neutropenic fever.  It is now 4 days after chemo and three days after neulasta shot so I am not sure.  I have put in an urgent call to the oncologist answering service to see what to do.  More later.

suzieq60

Sorry Blair - the temp is a worry though.

TheLadyGrey

My first treatment was on a Wednesday, I got terribly sick on Friday and fever started Saturday and peaked Sunday.



I have read that fever is a side effect of this treatment, although I was not told that. After the fact, the oncologist blamed my extreme sickness on a bug and I believed it at the time, but I don't anymore. Turns out my sister with the similar "bug" has diverticulitis.



Push fluids. Jello, broth, Gatorade, apple juice, popsicles (love!) smoothies should she be open to that - fluids with calories and electrolytes. I made the HUGE mistake of assuming with my first treatment that water was good enough but when you aren't eating water isn't sufficient.



I'm three days pre number three treatment and started on the diluted Gatorade, cranberry with soda water and diluted apple juice today. Tomorrow I will get REAL serious about it - still not able to eat much. Whole wheat toast and lemon yogurt are staples.



Set the alarm to stay on top of the nausea meds.



I'm sorry you are going through this. I'm sorry we are all going through this.

suzieq60

One of the ladies on here says in her profile - one of my favourite side effects is being alive - take it to heart.

 Merry Christmas Blake - I know it's tough but you are the most wonderful man and I know you will take good care of your girl.

Sue

AlaskaAngel

By now Blairk your oncology service or oncologist has hopefully helped you with evaluating the fever and addressing it appropriately. Neutropenic fevers are emergencies in that chemotherapy reduces the blood cell counts and the immune system's ability under more normal circumstances to fight infection and disease. If the blood counts get very very low to a true emergency, your wife might be required to be hospitalized and possibly put in "isolation" so that until her counts are good enough to be able to help her fight any infection she is more protected from possible infection as well as being in a place of close observation for prompt administration of helpful medications if there are signs of infection. 

Some things have changed in the years since I had chemotherapy. At that time, if one's ANC (absolute neutrophil count) was below 500 one was borderline for hospital admittance, and definitely hospitalized if the ANC fell to 200.  However, the criteria may be a bit different for your wife depending upon how many days out she is from treatment and depending upon the anticipated effects of the Neulasta. 

My circumstances were different, but the principles for infection and neutropenic fevers haven't changed. I don't know if the protocol has. I refused all blood boosters such as Neulasta or Neupogen, and without it my nadir was usually no lower than 500 at 7 days out from each treatment with CAF, I had no fevers, and my refusal simply prolonged the period required for rebuilding cell counts so that my treatments were 4 weeks apart instead of 3 weeks apart.

I am glad you are working closely with the oncology service for your wife, and hope the fever clears with their assistance. This is her very first treatment, so that makes it especially difficult. You both are in our thoughts.

AlaskaAngel