Chemo in July 2015

FreeandFlying

pavlovsbell- I hated my port. I had more pain and issues with the port than I did with my lumpectomy surgery and breast reduction/reconstruction surgery! That being said, my port became the least of my worries after starting chemo. It took a back burner to all the chemo side effects.

I was able to start sleeping on my sides again about a week ago ( about 1 month post port placement and 2 months post first surgery). Sleep is so critical for us in maintaining health with all the surgeries and drugs and SEs our sleep really becomes compromised.

the delay in your chemo could be a blessing. If I could do it over again I would've paused my life before starting chemo and spent time focusing on myself and strengthening my body and mind through nutrition, meditation, gentle excercise and connecting with nature.

Yoxter123

hi everyone......thank you so much for messages of support .....very uplifting!

So just got home from overnight stay in hospital......... The saga of the portacath ...after three days of tests.....xray,CT because the lovely gentleman in radiology who asked me about chest tumours reported ? Mediastinal masses ........ Turns out it was just my reoccurring seroma on R side...if he had just looked or asked me !! Two portacathagrams and they decide that it is blocking off because of unusual position in vein...... Theatre yesterday to take it out and replace with a new one ...fingers crossed this works as my left arm and left foot are pincushions from iv's and bloods.......and then overnight stay as bloods and platelets were borderline.......home today yihaaa!! Chemo rebooked for Tuesday......so relieved but a bit apprehensive hope it works ok........ Just another of the little challenges that we face everyday !

The sisterhood on this group is astonishing .......the support is complete, unjudgemental and comes from the heart ........ I believe this whole "journey" is made so much more doable because of the knowledge and support gained from here.

Hope everyone has an amazing weekend...little or no SE and marches into next week ready for battle again

G'day from Australia

Cheesequake

G'day Yoxter! I spent 3 and a half years living in Oz - I miss it sometimes! Here's hoping the port behaves itself from here on out. Best of luck!

My side effects have completely tapered off over the last few days - I was thinking I'd get to pretty much forget I was going through chemo for the next week until infusion #2. Then last night (day 13), I very gently ran a wide-toothed comb through my hair. Wow, a lot came out. I still look totally normal, and I was fully expecting it, but that was a freakish first experience with hair loss. I'm using the cold caps so hopefully there won't be a massive shed, but I know that shaving it all off may still be a necessity. The look of fear on my husband's face when he saw all the hair in the bathroom sink.... one of only a handful of times through this whole experience so far where I've actually felt like a cancer patient. He loves my hair way more than I do.

mama26

Can someone add me to this list please?

I started AC chemo July 23

Thanks

theearthlaughsinflowers

Hello everyone. : ) I need some advice....

I've had 2 rounds of AC so far. With my first blood draw they were confident that my veins wouldn't be a problem and I'd sail through with the IV. Both times though it was pretty bad- at least 8 IVs in- actually in, not just pokes, because they would work but then close off due to valve issues. So very stressful because we would start the drugs and then have to stop and do it all over. I can handle a lot of discomfort but I have to admit the idea of 14 more visits like this makes me feel sick. Although I'll be feeling sick anyway ; )

They are recommending a port. I have concerns. Maybe your experiences can help me? For those of you that have them- have you had any complications with the surgery/ placement? Can you feel it? I don't need to be more uncomfortable and less normal than I already do. I have a very physical job (and was once quire active!- has it cut back on your range of motion? And lastly- does anyone know if there are lasting side effects or feelings once it is removed?

Thank you so much for your thoughts!

mama26

Batesburg. Thanks for the info on Carboplatin. I will be asking my MO about it at my next treatment.

Suzanne1971

@theearthlaughs: I have a port, placed on my upper right chest wall. The procedure was minor, and I had a few days of discomfort (unable to sleep in normal positions). It was put in about a week before my first infusion. There are days that I still get a little discomfort at the site. But I am glad I have it

MissBee123

Earthlaughs--Oh my goodness I have never been so happy to have a port. My initial reluctance was completely eliminated when I had my first infusion. After such a difficult time with arm IVs, the port is a breeze. Especially with the numbing cream, I didn't even feel the needle go in.I LOVE it.

The surgery was very simple and I did have a fair amount of initial discomfort but it all faded within 2 weeks. I have normal range of motion now and can do all my usual activities.

I would highly recommend a port, especially if your veins aren't cooperating. It has made everything easier.

Good luck!

JAnnG

Hi Michele,

Well can you stand another member? I'm Ann, 61 yrs young. Diagnosed L Invasive Ductal Stage 2 Triple Negative on Receptors 7-3-2017 Started chemo 7-23-2015. Every other week AC first 4 rounds, then 4 rounds of T. I can not tell you how much this forum meant to me. Reading everyone's post just reinforced I wasn't crazy. My Doctors did a fabulous job in preparing me, but once you've jumped in the deep end you find out how fast you can swim. I want to thank everyone for their words of wisdom. The only thing I would share to a newcomer was a great piece of advice given to me by the wonderful patient coordinator at the facility where I had my mammogram. Pretend it's the first day of high school. Go to Walmart, buy the Three Ring Binder, the pencil bag, highlighters and pencils (tried pens, but things change so fast I got tired of crossing out). Also a calendar with holes punched in and some plastic sleeves. GET ORGANIZED. You will not believe the power that notebook gives you. It's going to be your life for quite awhile.

Bliss58

@theearthlaughs: I had a port placed in my right chest side a week before my first treatment and am so glad I have it! I have good veins, but my MO thought it was a good idea since I'll be doing Herceptin for ayear. They still draw blood from my veins, but I like being attached for treatments from the port rather than an arm or hand vein. Each time I go in for a treatment, they spray with a numbing agent and access is no more painful than accessing a vein. I was completely put under for the surgery, and recovered very quickly. Cardio Surgeon used dissolving stitches and put a glue-type substance over the incision for infection protection which didn't peel away for a couple weeks, but it healed just fine. I was given a Rx for 20 oxycodone, but ended up only taking three and then Tylenol. I haven't had any problems with it whatsoever. I can feel it only if I touch it, otherwise, I don't know it's there. Hope this helps and best wishes.

FreeandFlying

Hi JAnnG. Good idea about the notebook. Right now I just have a pile at the end of my kitchen counter with all bc paperwork and literature but it's about to topple over and knock down the adjacent mega-array of prescription and over the counter medications. Not very sightly!

Theearthlaughsinflowers- I agree with the others about a port. I would chose to endure the post surgical soreness ( and for me neck pain) along with the sleeping on my back for a few weeks ( probably less time for others ) over not having a port. I have only iced my port for about 3 min before the nurse accesses it and I almost don't feel a thing. Only long term effect that I know of is the approximately 1-1.5 inch scar. I didn't lift anything over a few pounds or even vaccum with my right arm (port in right side of chest) for a couple weeks but I have full range of motion, etc. no problems.

I think for me, like so many things with this journey, it is perhaps the psychological aspect that is most daunting. My port is clearly visible as a bulge under my skin with a tube running up my chest and over the clavicle bone. It's just another daily reminder. But I would absolutely choose to have a port over being stuck with needles. You are so brave for enduring what you have with accessing your veins!

Bliss58

Hi all. Two days out from my second treatment and so far so good. SEs are minimal with just a touch of queasiness and food's not so exciting today, but coffee still tasted good this morning! Hey, my sister found this water called Resource at the hospital, but we've also now found it at Safeway. It is just water, no sugar, no flavor, no additives, but does contain electrolytes, and that's what I've been drinking. Water has always tasted okay for me, but plain water gets boring after awhile, so I've been flavoring with lemon or lime. I also bought some infused waters called Hint online because it's easier for me to just grab a bottle and go. Flavors I'm drinking are watermelon, blackberry and pineapple; too lazy to infuse my own water! ha. They use essential oils I think.

FreeandFlying

Hi All- 24 days since starting chemo and I've lost 90 % of my hair. I never fully shaved it, just buzzed down to 1/4 inch. It's kind of weird because my face is tan and scalp is so white.

How is everyone else's hair? How are you feeling about it? I can't really put into words how I feel about the hair loss. I tend to over analyze and thoroughly process everything but my emotions and thoughts are kind of blocked right now with regards to my hair. Would love to know how you all are feeling.

Want2Bcamping

@free - we started chemo same date. I buzzed my head as well. I don't have much left and my arm hair is falling out now too. I am doing fine with going bald. I have chosen to not do wigs or covering. I thought the same thing about tan face and so white scalp

MissBee123

Welcome JAnnG! I agree with you, staying organized is so important. I actually treated myself to an accordion file purse: http://www.amazon.com/gp/product/B00BG4CCIW?psc=1&... The purse has made it easy to carry everything around. I have a section for each doctor, all pathology results, medical receipts, health insurance referrals, etc. It's incredibly helpful and it doesn't hurt that it's cute!

FreeandFlying, I'm only 5 days in so no hair loss yet. Instead I've got a RAGING case of shingles on my face, scalp, and chest. Home in bed, feeling pretty miserable. Doctor gave me a nice big bottle of horse pills but told me it will take at least 3 days until I feel some relief. I didn't even know shingles was a possible side-effect until this happened. Really puts to use the phrase, "Kick you while you're down."

Hope everyone else is having a happy and SE free weekend.

JAnnG

Love the amazon bag! Anything delivered these days puts a smile on my face.

FreeandFlying

Want2BCamping- that's awesome and I think I'm with you- feeling OK with going bald. Never thought I would say that!

MissBee123- hope you start feeling better very soon! Sending healing thoughts your way

Thinking of all of you and how amazing and strong each of you are

6feetover

I was planning to go around as Kojakie, too, but that blazing sun on my vulnerable, pale noggin's a no-no. I dunno...the Sinead look was ok for me psychologically, but I'm not so sure, now. I've only got a bit of stubble left; some pure skin patches are visible. It's no longer "cute." DH gently pulled off my little beanie the other day to give me a kiss on the head, and I lost it.

FreeandFlying

Adarkadaptedi that is so sweet about your DH kissing your head. It brought tears to my eyes. My family and friends have been so kind to me about my appearance and it has helped tremendously. The sparseness and patchiness of my dark stubble hair on a very white scalp doesn't look good. While I'm settling in to be OK seeing myself this way, I have chosen to wear a scarf in public for now. Still can't get myself to wear my wig although it is very nice. It doesn't feel like "me" so Im hesitant.

mdoc524

Hello July Chemo Friends

Welcome Welcome Weolf – sorry you have to be here but so glad you found us! As for Nausea PeaBrain is dead on – have to combine all the meds to find the best mix for you – I had my 1^st treatment yesterday –same AC as you – nausea hit me 4 hours later .. better today as I took the nausea meds before feeling sick just to stay ahead of it. I also bought Ginger Cookies and Crystal Ginger Candy just in case .. had a cookie J Good Luck! Also keep hydrated – find what you can drink and remember popsicles, water ice etc count as fluid J

Mama26 – so sorry thought we had you on the list – will get you on right away!

JannG – Welcome Welcome to you as well! Great tips on organizing everything –thanks for sharing

Ruth – to be honest when I first read your post about your husband – it made me mad wondering if the tables were reversed and how would he feel if you treated him the way he was treating you! Soooo sorry for you and maybe I am a little harsh if so sorry for that! Hugs to you and never never feel like anything you are going thru is your fault – find your inner strength with us or even a community support! Hugs to you

Peabrain – you are dead on with explaining Nausea – Hit me yesterday right on Day 1 – Yippee! I could not tell if my nausea was from the horrible sinus headache or if it was heartburn or I could not swallow! Took a Compazine and went to sleepland for a little while – woke up still bad headache which did not go away until this morning J I also take High Dose Probiotics (Ultimate flora) and shooting for 70 ounces of water / liquid per day!!

Pavlov – so sorry your chemo was delayed! You are more than welcome to hang out with us in the July group since you started here – we won't make you leave LOL! Hope all works out next week!

Yoxter – sounds like you are heading in the right direction – glad you are and hope port issues are all gone for you from now on .. hugs for you!

FreeandFlying – asking about how we feel about our hair? Well I cut my long thick hair really short on Thursday night the night before chemo – see Chemo Day 1 Picture.. It was hard as I have always had long hair most of my life.. I will shave it as I get closer to losing it but I think that will be harder .. I am like you – a little vanity about losing my ponytail – feels like I have phantom ponytail feelings if that is possible J Good luck to you as you are going thru it before me!

To All – as I watched and read about your journeys in getting your chemo for the 1^st and even 2^nd time before I got mine – I thank you all for sharing! This forum is my one (for me resource) .. I am very lucky at home with a lot of friends and family here to help – my sister in law went and cut her hair off with me.. but staying connected with all of you means so much that is just mine! As you can tell the steroids are kicking in and my mind is racing!

So had my 1st Chemo yesterday .. got hit with se's right away – full force tired/weakness as the Red Death went in and then when I got home terrible headache and nausea that I could not tell if it was from the chemo or the headache or just heartburn or swallow issue .. took meds just in case. Today better – thankfully no headache – just really full red face flushing and really shaky from the roids but tired at same time – able to eat bland J staying on top of nausea meds though. Got Nulasta shot today and hoping the claratin and Aleve do the trick! Glad I finally started so that the finish line can get here!

I hope all are well – either no or minimal SE's and for those with more than the min – hugs to you and hang in there! Thanks to All

Here's a pic of me with my new short hair (YUCK) in my Chemo Chair fighting like a girl!! XOXO Mary

CinderellaNC

hi , I started chemo therapy on July 31, 2015. I am getting TC four treatments each spaced three weeks apart. I had a lumpectomy on June 16. I was diagnosed with ILC on May 29th . I am in the triple negative tribe even though I don't really fit the mold for that. I am 63, Caucasian and don't have BRCA 1 or BRCA 2 mutation but no matter that is the way it has worked out . I was also told by my oncologist that only 3% of ILC's aren't ER+

Go figure. My cancer thankfully was caught early , 7 or 8mm , grade 2 sentinel lymph node dissection . No cancer in the node. At first they were thinking four months or five months of AC + T chemo . Then there was consensus to go with the TC instead for three months. This is to be followed by 6 weeks of radiation but I am going to push for having a bilateral mastectomy instead avoiding radiation and the additional risks of MDS or leukemia down the road.

Suzanne50

we have similar treatment plans @cinderellaN - I was diagnosed on May 29th as well. Had a lumpectomy on June 18th but my lumpectomy was unsuccessful - no clear margins. So I had a mastectomy. My cancer was also 8 mm but had 3 positive nodes. I am also doing 4 TC treatments starting August 3rd. Radiation is still up in the air. Seems to be some difference of opinion. I am trying to gear up for Monday. I hope you are feeling well!

mdoc524

Welcome Welcome CinderellaNC - sorry you have to be here but glad you found us! Great group of strong women here to support you as we all beat this together! Hope your 1st treatment day yesterday went well!

I had a Bilateral Mastectomy - send me private message if you want any info

Mary

hartrish

cinderellaNC: I also had ILC in both breast. One tumor ended up being TN so getting 4 rounds of TC like you.

FreeandFlying

Photos of my first chemo with one of the fun short cuts I played with and then 24 days post chemo with essentially no hair. Before this diagnosis I always had hair down to the middle of my back. For those wondering about a port you can see the dressing and tubing going to my port.

FreeandFlying

mdoc524

FreeandFlying - both pics - you are beautiful! thanks for sharing

RuthElizabeth

hi everyone. Thanks so much for all your wonderful support. You have no idea how it makes me feel, that we are not alone in this. I have chemo schedule for Monday, but my mother in law might be taking me. If she does, I will wait to talk to the social worker about some therapy. But, I am going to take all your advice and talk to someone. I think he will be better since his mom is here, but I still need to know what to say, other than flipping out, when he is an ass. I have always tried to think before speaking.

I can't explain how well my week is going. I almost feel guilty for feeling normal. And I must admit, I'm ready to go for treatment Monday. I'm not feeling anxious, like I was this past week. I'm eating, even gained 3 lbs. I could afford to loose another 20 lbs, but not by being sick. Haha

I hope you are all having a healthy, happy weekend. Find laughter. I am very easily amused these days.

I must admit, I'm loving my shaved head. I still have stubble. I have a wig, some hats, and still just go without. Except when outside in the sun. My dad told me I need some sun on my head. Haha, I cringed. No sunburn for me,haha. Everywhere I go, I see people looking at me strange. I just smile and say hi.... Especially to the kids. Poor things. They definitely don't understand. I hope you girls can accept, this hairless thing makes us all SPECIAL. We belong to the club of beautiful eyes, awesome smiles, and tons of Love. No more hiding behind hair. This is who we really are. All we want is to be loved and healthy again.....be Strong, my Friends....

Ruth

Want2Bcamping

Freeandflying - you look amazing!!

rosesrx

popping in from chemo in May, just read the last couple pages. You gals are doing a wonderful job supporting each other.

For the nausea… stay on top of it. Especially the first couple of days. Hopefully you should have 1 or 2 meds in your ever expanding collection.

Zofran, should not cause drowsines.… however for me constipation… and the following indigestion proved to be troubleome but treatable. Here is what I do since I know I will be getting something IV as pretreatment on spa day that morning or night before I start with a stool softner and simethicone and take that combo every time I take zofran. The simethicone can be taken as needed, usually when eating. As some of you found out the steroids cause upset stomach as well so zantac, pepcid twice daily helps keep the acid at bay.

I haven't had to resort to compazine or ativan.

Hydrate. Keep water at your bedside, in car, bathroom, computer, recliner and sip sip sip. As for the bucket/trench mouth I am finding the water with electrolyte enhanced easier to swallow. Like the powerade zero, gatorade 2, lemon water or a squirt of Mio helps. I aim for 100 oz per day. I don't enjoy my coffee or iced tea an had to limit my caffeine after experiencing tachycarda (rapid heart rate) on day 5 after my first treatment.

As for the port, a must for me due to Herceptin for a year an was put in during my mastectomy / hysterectomy. A threefer! It did cause more discomfort than mx, I numb it up before going in with Emla cream and cover with a piece of Press n Seal wrap since tape doesn't like me.

Good luck and gentle hugs.