Anyone starting Chemo in Feb?

Primel

Hi, Marsha (kb)... I did understand that you were writing about getting "conditioned" as well as possible to sail through this chemo storm with a strong system to start with, and I do believe this is very important. Thank you in advance to "dispatch" the info you'll get (I used to have acupuncture sessions years ago, when I was still living in Paris, young and single, to relieve sinus symptoms I had then, and also to help with post-polio (1957) weakness in my left leg. Here, although there is an acupuncturist next door, I did not investigate yet... prices for these in the US are 4 times higher than in France, and I am not sure I can go that route financially, but I was always very interested in all these approaches, so I will look into it now that it is essential to make everything work for our comfort, etc.).
You all have a decent day, with special thoughts to those undergoing surgery, tests, chemo today.

Hugs,

Catherine

marshakb

Linda 2 how did your surgery go? And Linnie (was Linda #1) what about your port? Hope that went well. Leah weren't you expecting some results back? Hope you got that the waiting is the worse and looks like you will be the first one to get the chemo so we will be anxiously waiting to here ALL about that.

Catherine, I have some how stumbled onto a huge bunch of angels in my life since my BC dx. I have a long story of no health insurance, blah blah and have had folks rally and pull strings, use their friendships like you wouldn't believe. The acupuncturist is a friend of a very dear friend who is seeing me for free. She told me if I got in a positiion to pay her later....great. If not, OK too. She believes that what you give comes back 10 fold and this one of her giving moments in HER life. I could cry just typing that. I am very blessed, am not taking anything for granted any longer and have to admit this whole thing has put me back to a very close relationship with God and my faith. You know you go through life taking things for granted. I guess I needed an eye opener and other than the BC dx, I have a had some amazing things occur in my life. Flat out goosebump God moments.

Hope everyone had a good day. I went into the office, wrote a contract and two listings. Seeing Barbara for another accupuncture session at 6 pm. Love to the Chemo Cruisers! Marsha

NarberthMom

Hi February ChemoCruisers -- I hope that everyone's surgeries went well!

Monday's are always difficult for me. I'm not working right now, so I'm all alone in the house (husband at work and son at school). After the go, go, go of the weekend, I totally collapse and generally feel sorry for myself. I can't seem to escape feel exhausted. Can't imagine what life will be like once I actually start chemo!

Tomorrow, I have my MUGA scan in the morning and then second meeting with onc doctor in the afternoon. I've compiled a list of questions, mostly gleaned from these boards ! Most important one -- what can he give to sedate me during my MRI-guided biopsy on Thursday so that I don't freak out !

Hugs all around ...

-- Hillary

swimmingmom

I got the seroma drained this morning and it is already almost the same size tonight-ugh. Port-a-cath was scheduled the day before chemo starts. They said this was so it it is already accessed. Seems like a double whammy to me. Hope everyone is doing OK. karen

linnieva

Hi fellow cruisers,

Hillary, I hope everything goes well for you today with your scan and appt. I truly believe that we are all going thru the worst of it right now and it's going to get better. Have you gone onto the Jan chemo site? Most people seem to be tolerating the drugs well.

I read on one of the sites yesterday that you can contact the American Cancer Society and they will give you a free wig. I called our local branch and I'm going to stop by on my way home from the onc tomorrow. I bought a wig recently that I thought I liked, but now I'm not so sure. It looks too nice to be my hair.

Hi Karen, I had my port installed yesterday and it wasn't as bad as I thought it would be. I hurt like hell last night but then woke up this morning and it felt fine. Ok, not exactly fine, because it looks like there's an alien baby sticking out of my chest, but no real pain to speak of. Yeah! Is your chemo still schedule for the 15th?

Linnie

NarberthMom

Hi Fellow February Chemo Cruisers!

I just got back from my oncology appointment -- I start on Tuesday February 13th. I don't qualify for the clinical trial, so I'm just having the standard dense dose AC x4, followed by dose dense taxol x4.

The MUGA scan wasn't so bad, but they had had a hard time sticking me AND I have "good" veins! When I told the chemo nurses who drew my blood for my first CBC count, they told me to come up to them for any IV or blood work! I'm going to start without a port, with the understanding that they'll put one in if there are problems.


I'm still having trouble shaking the depression, so my oncology doc wants me to see my psychiatrist for counseling in addition to drugs! (The 13th start date is predicated on the anti-depression drugs finally kicking in). I seem to be able to (barely) hold it together for when my son is around, but lose if about 50% of the rest of the time. I guess I'm improving in that I used to lose it about 90% of the rest of the time !

Still have the MRI-guided biopsy on the "other" breast to get through on Thursday. I'm waiting for the onc nurse to get back to me with recommendations about how dosed up I can get prior to the procedure.

I'll let you know how my cut and color goes tomorrow in anticipation of my wig! I also bought some headbands (to go under scarves and hats), a nice soft winter hat, and a couple of bedtime head warmers.

With all these ports getting put in, there must be imminent start dates for chemo. Who is first?

-- Hillary

Primel

Hillary: good luck with everything. How could we help you battle depression? Is this due to your BC patient situation or is it something you had to struggle with before? Do you live by yourself? Do you have pets?
It looks like I'll be starting on the 13th, too (dd 4x4, plus neulasta the day after AC, plus avstin). I'll have the port place on the 6th (they insist to put it in my left arm, maybe because of the bilat mastectomy I had on the 10th)...

Will be thinking of you on Thursday... Remember, we are all here for one another, do not feel abandonned to your fate... There are so many very simple uplifting things all around us (classical music is one for me, and doggies for walking+playing+cuddling), maybe you want to find what truly matters for you and help you feel better.
Bon courage,

CatherineH

marshakb

Karen: How much liquid did they drain? I promise it does eventually stop building up!

Hey Linnie: You've helped with the cunfusion of Linda #1 and #2 by goijg by Linnie. I have a feeling when chemo brain sets in we were going to be confused! My port site looks like a gumball sitting on my chest. I swear it sits right on the surface, can't let my dogs scratch me or it will pop right out. Also the ACS has the Look Good/Feel Good program, I heard FREE expensive make-up. Not that I wear alot but when those eyebrows/eyelashes go I guess I'll need something. LOL

Hillary: It took my anti-depressant about 3 weeks to kick in so try to be patient. But remeber, xanax kicks in in 1/2 hour. I am looking into the Locks of Love thing so I can donate my ponytail. I am getting it cut in a short shag. Dang, too hot here in Florida for head warmers. I guess it will be scarves and baseball hats for me. Or maybe just all natural....who knows I may have a lovely look bald. teehee

Catherine: I am sure the reason they didn't put the port in your chest is because of the bilateral. You are so right, Hillary needs to find something that gives her joy to try and take her mind off things. I have found the guided imagery helpful. I could probably burn those cd's for anyone who is interested. One is "Chemo", one is "fatigue" and one is "fight cancer" The last is the only one I've listened to, saving the others as a reliever for the chemo and cancer. Her voice is so soothing!

Me and 3 other girl friends took a trip to NYC last June, lots of Broadway shows and saw Monty Pythons "Spamalot" which is just hysterical. My friend gave me the CD the other day and I listen to it in the car and laugh my ass off. ANYTHING to take my mind off BC is a blessing, as is all of you, my fellow Feb Chemo Cruisers! Love to all, Marsha

nynurse

I am starting chemo on thursday Feb 1. I am starting with 4 cycles of AC. I was dx with stage 3 on October 31st. I have had the CT scans,PET scans, MUGA scans and every other scan know. I had bilateral mastectomy with TRAM reconstruction on dec 6th. I am waiting until after I am finished with chemo todo the nipple reconstruction. I had an AND on January 4 for postive node involment. I had a port insersted about 2 weeks ago for chemo. I have never been this nerous before in my life.

Talk to you all soon.

Kim

marshakb

Welcome Kim, we call ourselves the February Chemo Cruisers and welcome aboard. We all are scared out of our minds so join the cruise! We have all promised to share this journey together and keep each other sane. Sorry you are taking the "cruise" but at least you won't have to sail the rough seas by yourself. Read our posts here and get to know us alittle. Looks like you and Leah will be starting out first on Thursday.....please let us know how it goes. Hugs to you fellow traveler....Marsha

Primel

Marsha, I am not sure I know what guided imaging is... I am more familiar -- because of my work as a medical translator -- with 'image guided brachytherapy', but there are more uplifting subject matters than that, especially for us all.
When are you all planning to cut your hair really short, just before chemo? I'll investigate for Locks of Love (I saw the program with Diane Curry, from NBC, when she did just that: gave her long beautiful hair for cancer patients needing wigs. I thought that was a great thing to do. My hair may not be long enough...)

Hillary, I was thinking of you, and I thought you might enjoy browsing a site we did, as a family album documenting the 2 first years of our puppy (Petit Basset Griffon Vendeen -- PBGV or Peeb) first to remember later, and also to share the adventure with other peeb owners... It may seem silly, but this was the opportunity to post beautiful views of Brittany (France), beaches, coastal trails (called "custom" trails since they were used in past centuries to spot "pirates" and other ship wreckers or goods smugglers). That may take you far away from your current pains and aches. Unfortunately, there is no sound nor smell of the sea... The site may also explain better what I meant by my "mental treasure chest" which I use to go through the not-so-pleasant steps of our medical journey. If you are interested, you are welcome to visit at: www.fluxmuffin.com (some pages are work in progress as you'll see). This blog was also to share with my husbands' kids and grand-kids when we were living in France (1993-2005). I hope this give you a little break (and others, too, if you need to "escape" from reality for a while (lots of pictures...)).
You all have a nice evening and a good night sleep...
Catherine

marshakb

Catherine, Guided Imagery is very much like your "mental treasure chest" with a very soothing voice teaching you how to find the mental images to sooth. I think you especially would like it since you already use a form of it with your treasure chest. For those who can't come up with the right way to go about it it directs you were to go and what to try to imagine. Marsha

leahrc

I will start Feb 1 with 4 cycles of AC. I had a liver biopsy yesterday, but results won't be in til Thursday. But we are starting the chemo no matter what the biopsy shows. I am very nervous too, but just want to get started so that it can be done.

I usually find things pretty funny, but I still haven't recovered from how my biopsy was delayed 4 hours,..... and how my significant other other of 26 years Tom wandered off with my purse which had my two cell phones and my IPOD in it, and I couldn't even call him to yell at him! How frustrating! I ended up dozing for an hour, and just basically hanging out in that fabulous johnny and thin blanket in a room that felt like 60 degrees for the rest of the time. What a day... we were there for 12 hours...

Hope all of you are ok. Thinking of you with love.

swimmingmom

Had the scans today and now waiting for the results. So I am quite sleepless in Cincinnati. I thought I would come up with a list of the Feb Chemo Cruisers so far.

1. Karen (sween) Ohio, Chemo start 2/15, port 2/15
2. Hillary (narberthmom), chemo 2/13, MRI bx 2/1
3. Marsha (marshakb), Florida, chemo __ feb, port 1/25 (How did that go?)
4. Melody (maj01), Texas, 2/5 port, 2/9 chemo, sister also in treatment
5. Phyllis (erinsgram), Mid Feb
6. Cynthia (cynthis1962), California, 2/6 port, 2/13 chemo
7. Linda (linnieva), Virginia, 2/6 chemo, port in on 1/29-how are you doing??
8. ? (wayover20), chemo 2/8, big birthday on 2/11 and need for hugs!
9. Catherine (catherineH), Colorado, __ Feb
10. Leah (leahrc), Massachusetts, bx on 1/29 (thinking of you!), chemo on 2/1 our first to start us off, + thoughts! surgery in March
11. Linda (LindaSuzy), Seattle, 1/29 surgery (also thinking of you), chemo late Feb
12 Kim (nynurse), NY, start 2/1 also our first of the group, + thoughts

If I missed anyone let us know. If I got anything wrong-sorry in advance. I put down some dates so we can keep track of each other and be of support. We can do this TOGETHER!!! It is so nice to talk with people who understand the panic, depression, fear, sadness, loss, happy moments, small positive strides..... Good Luck Leah and Kim on your first day of chemo, you will have 10 other supporters thinking of you.

OK, now maybe I will go clean some cupboards. I need those test results back!

Karen

marshakb

Oh Karen, you are so organized. That was great, printed it out and can keep it right here in case chemo brain kicks in. LOL I got you beat, not waiting for any tests and up at 3:30 am. I too worried myself sick waiting for my PET/CT scan to come back. That just seemed like a "biggy" to me. Hopefully since you had on Tuesday you won't have to go through a weekend like I did. I'm sure you will here the same as I did, normal scan! OK I'm gonna try to go back to bed............Marsha

NarberthMom

Karen -- Thanks for the list! I've been thinking about making one, but haven't been able to get my pre-chemo brain to wrap around it! I've pasted it somewhere else as well, so I won't lose it!

I, too, am having insomnia, but I missed you Marsha by an hour!

Today is a big day -- getting hair cut short and colored prior to wig. If it's long enough, I'll donate it, but wonder who would want my salt and pepper hair!

Two of my friends just did the nicest thing -- they bought me a gift certificate of six months of Netflix -- enough to get me through chemo!

-- Hillary

leahrc

Thanks so much for the list. And for the thoughts on my biopsy day. Opted for 2 p.m. appt. on the 1st, as my thinking was work awhile, show up for appt. Go home, eat something (we like to eat supper early, since we go to bed early and rise early), watch some tv and fall asleep. Hopefully be asleep through first of nausea hours. Does this make sense to people? I couldn't find anything in any posts about people being awakened with nausea, so I am hoping I can sleep through most of it?????
I also refused Decadron becuase I have had bad reactions to steriods like prednisone in my life, but I may have to change that decision later. Have to read more about Decadron side effects.
Am still scared to death... my port had a clot in it, which they discovered when they tried to use it for the biopsy IV, but they blew it out (let's not talk about that process unless someone really wants to know what it feels like to have a truck parked on your chest). They marked the best spot for the onco nurse to put her IV, so i should be all set. Sheesh...
Again thanks, posting your list on my cube at work and on my fridge to send thoughts on the right days and beyond.
Also working on getting the words to a wonderful song by Meg Christian for our fellow cruisers.
Love.

linnieva

Karen, thanks so much for the list. I tried pulling one together last night but couldn't concentrate well enough to get it together. I have an onc appt this morning to go over my FISH (I don't want to take Herceptin) and other test results and I'm totally freaked out about it. I keep telling myself that this is the last major hurdle.

Leah, sounds like just an awful day yesterday for you. My thoughts will be with you tomorrow on your biopsy results and your first chemo. Hang in there and let us know how you're doing.

I had an AND surgery on 1/15 and I'm still having pain/numbness in my arm. How are others doing with it? I'm doing the exercises and they seem to be helping some but I'm wondering how long it takes to heal.

Guess it's time to head out. Yikes!

Love to you all,
Linnie

ErinsGram

Hi Cruisers. Thank you so much for that list Karen. I haven't even started chemo yet and I think my brain muscle has atrophied - all that on top of the fact that I'm a very disorganized person. With regards to scheduling, I had my chest xrays and blood work done Monday and the MUGA is scheduled for Friday. Had to make a run to the hospital this morning to have my chest and armpit deflated - drains finally came out Monday and had accumulated 120CC of fluid - Karen, how are you making out with the drainage? Hope it goes away SOON! Meet with the Onc Monday morning and will find out which trial group I get dropped into (assuming the MUGA comes out ok). She said we'll probably start the end of the week (8th or 9th). Can anyone tell me about the MUGA - what they do, how long, etc?

Marsha - nice pic. I hate getting my picture taken so I guess I'll have to do one of my choc lab Hannah. Where are you in Florida?

swimmingmom

Hilary,
What a great idea for the movies. Be sure to include some comedies in the mix. Remember that study that was done some time ago about how humor helps healing and the guy who watched all comedies and laughed. can't remember his name right now. Karen

Primel

Hello everybody... You all refer to MUGA... is it the heart ultra-sound investigation? If yes, This is a totally fine test, does not hurt, but it took almost an hour because they measure absolutely everything in your heart: it's very interesting (of course I always ask the technician to comment the procedure, since the technology side of it is of interest to me as a translator -- I translated manuals years ago for echography machines like those, extraordinary technology!! and non-invasive). Erins, do not fear this one, it's not unpleasant at all (even done over the left scars of a bilat mast done 2 weeks prior... as was my case). Good luck with everything. Which study are you going to join?
Have all a peaceful day (we are in for the 7th snow storm/arctic cold since Dec. 20...)
CatherineH sending frosty hugs from Denver

marshakb

Phyllis, NO, no, no not fair. I think it is great to be able to put a name and face together. AND I know you don't look like a chocolate lab. I have 2, a brother and sister that are half lab/half catahoula leopard dog. Max looks like a lab and is white, Roxie looks like the catahoula and is chocolate with white stripes on her face. SO cute. Max is dumb as hell and Roxie so smart she sometimes scares us. LOL I am in Ocala, Florida, center of the state.

Karen: Laughter is the BEST medicine. I love the Austin Powers movies!

Linnie: My surgeon had to "sacrifice" a nerve, I think I will always be a little numb under the arm. oh well

Hillary: How can I guilt my friends into a gift certificate like that????? LOL Maybe hint that I can't afford Blockbusters? Getting my hair cut Monday, have friend(s) lined up to go and make it a circus. Guess I'll have to post a new pix. Only thing is it took me forever to figure how to do it in the first place. HA

Come on girls, get those pictures on line, I want to see who my new best friends are! Love, Marsha

Primel

Linnie, I had a AND in my right armpit (the lady surgeon did everything at surgery time -- 6 sentinelles -- 2 positive, and 5 axillary, all clear). It will be 3 weeks tonight, and indeed, this is the most painful part. My left side hurts a little, too, although they did not remove nodes there (mastectomy on both sides). It's worse in the evening and when I wake up (I still sleep kind of sitting in my bed, with pillows under my arms to keep them elevated. Amazingly enough I sleep like a baby that way and do not have the excruciating shoulder pain I had in the morning before all this started...). I do the exercises too and move my arms a lot, the stretching is not very comfortable, but I noticed too that the more I move the better it gets, especially true during and after my long walks with my dog where I make a conscious effort to breath deeply. I try to practice what is known (in France) as "Afghan walking technique": you inspire on each step, then hold your breath for 2 steps or more, then expire on even more steps and block your expiration on 2 or 3 steps and back up to inspire deeply, etc. It's amazing how it relaxes and make your system circulate... They recommend to start with 3 steps inspiring (inhaling?), 3 steps exhaling, then you progressively increase (4 steps inhale, hold 2, exhale on 5 steps, block on 2, etc. I like the 5 steps, hold 3, 6 steps exhale, hold 3... but do not overdo it and go progressively. They say that's the technique that allow nomadic tribes to walk for ever in the desert without fatigue... There are books about that (but mine is in French). I will see a physical therapist specializing in onco rehab to make sure I understand how to do things right to stretch a maximum and keep the scars elastic. For now, I just go by a booklet the surgeon gave me. I also still have some fluid accumulation after they removed the drains (I had them 15 full days), and the nurse told me to put back the brassiere-type of thing they had wrapped around me for better compression, and I feel more comfortable with this thing around my chest holding me tight. I take 2 advils at night and so far it's been manageable. Like you I have no idea how long this discomfort is supposed to last, but I think we are in this for several months... Cheers... Catherine

swimmingmom

Muga is a MUltiple Gated Acquisition scan. First a radioactive substance is attached to your red blood cells and then injected. You will wait awhile for the cells to circulate. It won't hurt other than the initial IV (which at this point may be difficult-I have no veins left) and the radiation level is minimal. ECG leads are put on your chest. Then a camera is placed very close to your chest and takes pictures of your heart. The pictures tell the dr how well your heart is functioning. This part of the test may take about 30 minutes. The major measurement is the amount of blood your left ventricle can expel in a contraction. This is called your ejection fraction and is a %. Ask what this number is and write it down. It may be good to know later. The reason for this is the effect Adriamycin has on the heart. This is typically only if one has heart issues to begin with. Sorry if this is more than you wanted to know but I am a cardiac nurse and this I know-oncology another story. I go for my MUGA in 2 hours!! Karen

NarberthMom

Good afternoon!

I just got back from my hair cut and the very first hair coloring of my life. We cut it short enough that I could donate my hair. It's actually just above chin-line, which is quite a difference from my normal way below shoulders hair! Also, I no longer have grey! I'm going somewhere else to make a final choice on the wig, but my hairdresser said that he would style it to me at the same time he shaves me bald!

I'll try to get my husband to take a picture of my new look and then figure out next week out to get the pictures up!

It seems as if things are moving along quickly with our group! Hugs to Kim and Leah -- our first two chemo cruisers!

-- Hillary

Primel

Karen, thank you for the info... As a translator, I note this in my medical dictionary... I understand I had a standard cardiac echography + doppler (heart beat squishy noises, too), but hey did not inject anything for that (I got the injection after that for the bone scan, but that's another procedure). I know that my ejection fraction is 70 (which I understand is not bad for a 54 year old, or anybody for that matter). I did a lot of translation work in cardiology (pacing, implanted defibrillators, etc. for US companies which manufacture these devices... software plus documentation), very interesting field.
Have a great MUGA test!
CatherineH

linnieva

Hi Catherine,
Thanks for the info on the breathing techniques you're using and on how you're doing with the arm exercises. I think I just need to relax and be more patient when it comes to healing. I'm usually so active and I walk or hike almost daily so this is really cramping my lifestyle (and it's only just begun, huh?)

I just got back from the onc and all my scans were good so I'm scheduled to start on Feb 6th with the A/C. The bad news (well, no news really) was that my FISH test, which I've been sweating about for over a week, was 2.35 which may be considered negative but the onc is sending it out to another pathologist for further testing. I found out that if I have to go on Herceptin, it'll take the treatment from 4 mos + rads to 13 mos + rads. What a complete drag that would be so I'm keeping my fingers crossed. They won't know anything for 1-2 weeks.

I also stopped at the Amer Cancer Soc and picked up another wig. They were so kind. One of the things I've learned most from this horrible experience is how wonderful people can be. As Marsha has said, there have been many angels in my life. One of my friends just sent me an IPOD to use during chemotherapy. Guess it's time to get rid of the old cassette player.

Marsha, I picked up the vitamins that boost your immune system from Whole Foods today that you had suggested.

love to you all,
Linnie

leahrc

I have HMO blue and they pay a large percentage for accupuncture treatments. I have never had any, but I am curious.

leahrc

thanks for the hug. I am getting a little anxious. No answer yet on liver biopsy. Should hear tomorrow.
Good nite and sweet dreams to my fellow cruisers.

Pepper1073

Hello February girls

I will also probably be starting chemo in February. I see the oncologist tomorrow. Hopefully he will give me a date at this time to start. I have one breast that is very slow in healing. I am hoping he says it is ok now. If not I will have to have it reclosed on friday. Get ready ladies we are going for a ride.