April 2013 Chemo Group

Omg Pamela!! That chemogate is hilarious!! Your writing is wonderful!!

I've had healing wound problems that has left me 3 months post surgery without being cleared for chemo..

Doubt creeping in your mind is the absolute worst!! Positive thoughts to you!!

Pamela once again you have made me laugh. Thank you!

I've been real lucky with my se. But now my mouth is getting sore. My second chemo was 9 days ago. You would think that I was in the clear. But I quess it doesn't matter this shit just stays in you. Then does what it wants when it wants. I use the biotene mouth wash all the time. I know there is somthing else I can use but I did not write it down when I read about it. So I need your help if you know what it was!

Indenial I have a rash! 7days after second round! It started what looked to be a couple mosquito bites, to waking up Wednesday mornign with my arms covered red and itchy! By that afternoon it had spread into large red patches! My PCP diagnosed hives, gave me a shot of prednisone. Thursday I woke up to swollen hands and arms, rash 75% over my body! Ended up having to get my wedding rings cut off, my finger was turning blue! After about 30 minutes after that my dh took me to ER. There the ER doc diagnosed me with Erythema Multiforme Minor. A skin reaction, not hives. They can not pin point what caused the reaction, with all the medications during chemo it could be anything. So the ER nurse accessed my port and filled me up with Benadryl 50 ( I had been tacking without much relief) Pepcid 20 and another stronger steroid, Solumedrol 125.

I have a prescription for Hydroxyz anti itch. I took it yesterday not finding huge relief either. Then read the pill bottle again today, duh take two tablets as needed. Well that might help!

Well good luck and keep a close eye on your rash! Don't hesitate to get to a doctor if it gets too much to bear.

Pamela!! Thank you for another very entertaining story. I'm glad the colloidal silver helped, thank God for homeopaths. I can really relate to your back pain panic, I hope you were able to get some rest & calm those nerves.

Rosina, so happy you are vomit-free!! And congratulations on being halfway through! Hope Taxol is easier on you.

OnaWing, I hope your stye is better... can I just say I felt so "normal" to hear you worrying about a stye? I was thinking I was crazy getting worked up about every little symptom but chemo just feels so scary because we never know when something small might become a huge problem!

Carol, let yourself cry... I do think it's something to do with the meds or steroids, both rounds I have done the same thing and I rarely cry otherwise. Try a nice warm bath and a funny movie?

Katie, hope you are getting over the worst of the side effects. Did you manage to work the rest of the week? Hope you feel better!

Lynn -- I've struggled with body image the last couple of weeks. The worse I'm feeling physically, the worse I feel about my appearance! Going to church last weekend bald (well, with a scarf) with weird acne, no breasts, a huge swollen face, and that rash all over my body, plus still on my period, was probably one of my lowest points  body-image-wise. Ugh, it was so hard not to just run out of there!! I stayed home the rest of the day and it wasn't just because I wasn't feeling great but more because I couldn't stand the thought of going out in public like that! I've had some serious body image issues all my life but never let it stop me the way I did this week. Oh well. I am back to being OK for the time being. 

Jen, LOL! I keep meaning to stash a spare scarf in my car because I just know one day I will leave without one! I don't mind walking around bald at home/in my yard and have even ventured out around my neighborhood a bit... but I'm not ready for anyone else (anyone I know!) to see my ugly bare head. Except kids under the age of 6 (they are very accepting) lol. I take my scarf off when I'm babysitting if it gets too warm/itchy and the kids are so cute about it.

Speedy, YAY for halfway done and hurray for a vacation to look forward to! I'm hoping to get away once I'm done chemo too but waiting to actually book something because I'm not sure when I'll feel up to traveling. 

Gardengirl! I looked up pictures of that rash you have and it looks horrible! I'm so sorry! So they think it's somehow chemo-related? I didn't end up going to the doctor for my rash but did call at least 4 times... looking back, I should have gone to the ER because I was in the early stages of anaphylaxis but fortunately my mega-doses of antihistimines stopped it from getting too dangerous! I have my pre-chemo appt. today and curious to talk to my MO about what he thinks caused it. The nurse said he thought it may be a reaction to the meds I was taking to stop my menstrual bleeding! It ended up lasting 5 days (the hives & swelling, that is) but has finally subsided. I really hope it was that med because if it was chemo then I am really scared for round 3. Thinking I need to get an epipen, this isn't the first time I've had an unexpected/new horrible allergy but definitely the worst. I hope your rash improves. A lukewarm bath with baking soda helped for a little bit if you max out your meds...

Breaking news: My Nurse Pract. yesterday admitted that rashes/hives are often associated with Taxotere! (after my MO and nurse told me several times it's not the chemo)  From what I've read on other boards it seems that it just has to run its course and will go away when its good and ready no matter what you do. Putting ice on it feels really good and a paste of baking soda and water is cooling - if you don't mind it flaking off all over the place.

Had my third chemo Wednesday, one more to go!  I got the Neulasta shot this time and took the Clariton as suggested - so far so good. No pain.  Also kept ice chips in my mouth during T infusion and so far so good on mouth stuff.

Pamela, you are so talented. I hope you are a writer or are thinking of becoming one.

Onawing - I developed a stye with the first chemo and it went away after a couple of weeks. I have had twitching in my eyes almost daily and vision "weirdness" off and on, too. I bought some normal saline eye drops and that seems to help a little.

On crying - I am so not a cryer, but yesterday when the receptionist at the doctors office told me I had to pay another $50 copay I just started balling. I mean really, I was just getting a shot and I've met my deductible and max out of pocket. I've already given up on the idea of ever being caught up on bills or having good credit again. That's the new way for insurance companies to get you - copays. Three doc visits in one week =$150. Sorry, I got a little carried away but does anyone feel that this is just wrong? That you are going thru all this and still have to get harrassed about money?

I've yet to go out in public without a head covering. I just go bald in my house and yard. I usually just wear a bandana and people seem to know anyway because strangers will just come up to me and tell me that they are "survivors" or about some relative that is. I've gotten lots of hugs from strangers and people opening doors for me, etc...  At first it was very strange and uncomfortable to me, but know I'm kind of liking getting a little attention for a change. Even though hugs mean the dredded germs.

Patty: thanks for listing the mouth care tips in one place.  My MO ordered a special compounding RX mouthwash - Nystatin, Lidocaine & Benedryl.  Numbs your whole mouth.  After the first time I just brushed it on my tongue for thrush.  But I have it on hand if I get mouth sores next time.

Hives:  After surgery, they gave me Lovanox as an anti-coagulant in the hospital.  I developed horrible, itching, screaming hives all over my body.  Now i know I'm allergic to that one.  I feel for those of you dealing with this issue.

Blood test today mid way between tx#2 and tx#3.  BP was way down.  Got to figure out how to force more liquids.

Regarding hair loss....I know I am getting close to the time...first chemo was 5/6

My head feels like little tickles here and there...just started today. Is this the beginning?

If anyone had that happen, can you give me an idea of how many more days and what to expect? Thanks!

trying to calculate in a visit with my mom who is essentially unaware of what is going on with my life, and give my kids some warning, and figure out if I will shave my head at home or do it out. (I've already gone from shoulder length to pixie cut)



Pat

Allie -- the copays are horrible!! I was paying hundreds of dollars a month in copays on top of my already-expensive premiums & high deductible. We finally had to sign up for Medicaid, and that has lifted a huge burden for us. Check with your hospital social worker or the state Medicaid program to see if there's any assistance you might be eligible for.

Pat -- my scalp felt funny for about a week before the hair started coming out. Day 15 is when I started losing head hair (other hair started going sooner) and I had already shaved my head by then but I'd imagine I could have gone a few days past that without the hair loss being noticable. But, as they say, everyone is different...

Ok, thanks for the hair tips ladies. I'm sure it will be sooner rather than later.

Oh the joy!

I warned my 10 year old Daughter that this might be the "last Friday" I have my own hair.

She is not happy I will be losing it, I wanted to give her some notice. I'm sure she will be fine. I think we will all need a little time to adjust.



Pat

Love waking up every morning and connecting with you ladies.

I too am suffering from "radiation recall" -- called my MO nurse and called it "chemo burn"  -- she was quick to correct my language and referred me to my RO. They took a picture of it and gave me a cream/ointment called Silvadine. It is also used for burn patients. You goop it on (don't rub in) and cover with a non-stick pad to protect your clothing. I've been using it since Thursday -- my avocado sized burn has decreased in size to a little larger than a golf ball. Breast is still sore and red -- and hugs hurt. But it is getting better.

@MinusTwo -- I too feel like a "dried up Hazmat site (until yesterday). I bought a tub of Aquafor, then after my shower, razored off the remaining patchy leg hair, then used Aquafor on my entire body. My feet soaked in more than I thought imaginable. It was the longest post-shower primping I've had in ages, and Aquafor is a little like vaseline, but I could not believe how soft my legs were!!! 

My morning beauty routine takes longer than it ever has in my life! First mouth care -- brush, rinse and gargle with salt/soda water and try not to gag! Finally swish and swallow what my MO calls "Caragrape" (I think it is the same stuff as "magic mouth wash" that koru_ mentioned). Then since I can't drink anything for at least 15 minutes its time for a shower.

My post-shower routine is now ruled by ointments -- first scar cream on my knees (bilateral knee replacement in Dec), and all my tape scars from blistering after surgeries, then triple antibiotic ointment on any cat scratch, etc... followed by aquafor on corners of mouth, elbows and whatever part of my body is driest. Next comes my Silvadine on my radiation recall (don't get it on anything it turns it gray, like tarnish). Finally I add my facial moisturizer with sunscreen in it.

By then I'm so slippery its time to get dressed! First lint-roll my stubble and let the cats play with the used sheets. Then accessorize! My hat has to match my clothes; I need long earrings now, so have to find something that doesn't clash; oh, and don't forget finding a bra that doesn't irritate whatever part of my breasts hurt that day. Finally clothes. Whew, exhausting isn't it!!! Then since I want everyone to tell me I look great, its back to the bathroom for a bit of blush and maybe undereye concealer... And my hubby, wonders why it takes an hour to get dressed each day!!

Tonight hubby and I are going dancing for the first time since my knee replacement... so time to rest up.

Question of the day... has anyone yet found an everyday hat/scarf that isn't too hot, goes with almost everything, doesn't require serious fiddling, etc?

Morning gals,

So glad to have y'all to "talk" to. Lots of cool things going on this weekend, weather is beautiful and feeling a bit sad about missing stuff.  My boyfriend, who has been great through all this has gradually been spending less and less time with me...it's a little distressing but understandable, as I've become quite the grouch lately.

Pat and Indenial - thanks for your thoughts on copays. I'm going to call my doc office and see if there's something I can do. Assuming everything goes well and the nasty BC critter is gone, I only have one more chemo and then the usual followups so things should get easier (crossing fingers).

Irene - My MO suggested six treatments (either TAC or TC) as part of a clinical trial, and I did some research, got a second opinion and told him I'd do 4 TC. Since my chemo is just precautionary that probably makes a difference, but you do have a choice and if it doesn't make any difference in your prognosis, I'd say less chemo is better in my opinion. 

Non-germ hugs to all. Slowly but surely - We're getting there.

So agree Gardengril....I still have stubble, but the stress of see the clumps was MUCH worse than a bald head...

Got my latest hat from a cousin in Israel...she included a prayer....click the link below and your prayer will be sent into cyberspace~

A Prayer for Complete Healing

If you have a friend or family member who is ill and you wish to pray for them, the following Hebrew prayer may be recited to ask God for a complete and speedy recovery.

Mi-sheberakh avoteinu v'imoteinu, Avraham v'Sarah, Yitzhak v'Rivkah, Ya'akov, Rachel v'Leah hu y'varekh et (recite the English and Hebrew name) v'yavi aleihem refuat hanefesh u'refuat haguf yachad im kol cholei amo Yisrael. Barukh atah Adonai, rofeh ha'cholim.

May the One who was a source of blessing for our ancestors, bring blessings of healing upon (recite the English and Hebrew name), a healing of body and a healing of spirit. May those in whose care they are entrusted, be gifted with wisdom and skill, and those who surround them, be gifted with love and trust, openness and support in their care. And may they be healed along with all those who are in need. Blessed are You, Source of healing. Amen.

http://refuahshlema.com/

Carol - I have had hard knots on each vein from the IV, also an inch long "burn" along one. I think its the taxotere. I only had four tx too, so no port. I was supposed to get a PICC for the third, but they said my veins were too small. So, I got the third infusion on Weds, they went farther up on my arm and a larger vein, also had one whole bag of fluid after the tax., so I'm hoping that helped. I also put heat on it after and then ice periodically the next day. There seems to be some confusion on whether heat or cold is better. So far no knot this time, but its only been four days. I think the last time it showed up in about a week. They keep telling me it will go away eventually, but I have the fear that they are ruining the veins in my left arm and can't use the ones in my right because of lymph nodes.

Hi everyone. I started my chemo on April 2 so I'm a little late to this group, but as my mom used to say, "better late than never". I was diagnosed with stage 2 lobular invasive breast cancer in January after removal of what was thought to be a benign sebaceous cyst from my right breast. I had a bilateral mastectomy with tram flap reconstruction on February 14. The surgical decision was an easy one for me because my mammogram in November and ultrasound in December showed nothing and I was taking no chances. It turned out to be the right decision because there spots in my left side as well (that also didn't show up on MRIs or CAT scans). My nodes were clear and my oncotype was 18 so the chemo decision wasn't as easy. After many opinions, research and thought, I decided to go for chemo and make sure this cancer is really gone. I've had three treatments of taxotere/cytoxin and the fourth and last one will be June 4. So after my long introduction, the reason I've decided to get on this site now is because I'm having a hard time getting through these last few weeks. I has a PICC put in the last time because I had a bad reaction to the IV site after treatment #2. I know I'm almost there but I'm so sick of feeling crappy, cotton mouth, my bald head (and other bald parts), and people telling me how fast it's going. I just needed a place to vent and this seemed to be a safe place to do it. Thank you!

Allie, thanks. That sounds pretty similar to what's going on with me. I share your thoughts about the ruining the veins. But I know that there are often problems with ports, too. You just have one more of these things (or you will after you get through the SE's on this one! ) Yea!

PugMom, definitely a good place to vent! Let it rip! Where else are you going to find people who know what you're going through? I find that I have to rein it in every where else. I have friends who want to be there, but they can't handle all of the details. They want to be there; they just can't deal with it all. Just like the hair -I'm wearing a wig when I am going somewhere because I don't want to have to deal with their feelings about my hair loss. And because I am wearing the same wig every day to work, it's like they can pretend it's really my hair not a wig. Getting cynical, I am. I've only had two of these, but I found that I was far LOWER this time than the first time. Maybe because I wasn't able to sleep much for several days. Hope that's not a trend for the treatments.

Rockermom, you're a good mother. Just think of this as taking care of yourself so you won't have to miss more of those in the future.