Starting Chemo January 6, 2014

Nancyjeanne1967

katiegrey-I found my lump rt. breast the day before my 27th birthday and 5 days later was DX with IDC. Sucks but happy to have found this group. It's great to be able to ask questions, read about other experiences and know that they truly know what your going through. Sorry you joined the club (the club no one wants to be part of) but welcome. 

2ndtime4me

My port was checked today by cardiovascular lab. It is working, no hematoma. They think when I move my arm a certain way it is hitting my collarbone. They want to give it a few more days for swelling to go down before we think of doing anything to it.

I hope everyone else are doing well.

Jenski

Diagnosed and bilateral mastectomy within a few weeks .. Just before Xmas Now chemo.  I didn't really understand about a port but have learned a lot from reading through here. 

Thanks , stay strong ladies

paloverde

2ndtime, best wishes with the port.  I hope they don't have to remove it, but if they do, "this too shall pass.". 

My port was used for the first time yesterday to draw blood for labs.  The nurse asked if it was a PowerPort and I had no idea, no one ever specified, and could she tell from the outline of it?  She said no, still too much swelling, but no more than expected for one week post-placement.  So apparently it does resolve.   Most importantly, the port worked fine.  

Over on the Dec 2013 surgery forum a lady related that she was told smaller, thinner women can have more port troubles because there isn't as much tissue around it.  

From people's comments it sounds to me like those of us in the Adriamycin club and/or slated for 8 to 16 infusions or more, are the more common candidates for the port.  

Jenski and RGSRH, thanks for joining!

paloverde

WW, on the surgeries thread you mentioned something about non aluminum deodorants and chemo.  My chemo team didn't mention anything about this and I don't recall encountering it on prior chemo forums.  What is the relationship?  

Radiation therapy is where I've seen cautions about aluminum deodorant/antiperspirant.

Has anyone else been given deodorant guidance re: chemo and/or radiation?  Thanks.  

candycandy

Hi ladies! I posted about a week or two weeks ago as first time. Those who are new here, welcome! I am still new here so I will introduce myself again, I am 33 years old (VERY young but not youngest) no kids, have a wonderful husband for 10 years, and have a adorable dog. I was dx on 11/27/13, and went lumpectomy and sentinel lymph nodes biopsy on Dec 16, 2013. All margins and lymph (2) came back all negative and I am stage 1. Yesterday was my first ddAC chemo day. It went very good and much easier than I was thinking about. No significant side effect so far. At the beginning of Chemo, I got sodium chloride (saline solution) a lot for hydration and it helps a lot! So it's very recommended!! My option for hydration was if I can drink 2L a day or get this saline solution. It's impossible for me to drink 2L, so I asked for it. Then, anti nausea medication thru IV plus, zofran, and compazine before ddAC start. It took about 1 and a half hr with nurses and pharmacist explain about all the medication and plan for today. It was very nice because I have plenty of time to ask all questions I had and curiosity of choice of medications. After I took all of them ( I went bathroom  twice at this point!), then finally adriamycin started. it was just about 10 min. Before I move on to Cytoxine, I went to bathroom and my urine was already reddish/orange-ish. And about 3rd time of bathroom right before I finish Cytoxine, my urine back to normal. I wasn't bad at all. Cytoxine have other side effect that nurse warned me that I may have tension or sensitive nose during infusion. I felt some, but it wasn't bad at all. This was my first day of Chemo and my husband was with me all the time and one of my friend stop by a min. And I had a lots of interaction with nurses and other staffs, so I had to focus on many different things that it may help me forget about side effect. After 20 hrs passed now, and I feel fine. I have a minor feeling of nausea but it still under the control. The IV for anti nausea is supposed to last for 2-3days, so it may be helping significantly. I hate feeling nauseous. Anyhow, I have minor muscle sore about my body but nothing really a problem. I still can do normal daily activities. 

Today, I will go back to the treatment center and get Nuelasta. Then, my MO told me to go bone scan and CT scan for just in case. She said I should have nothing there. Would you ladies done those? This is beginning of year and my deductible and out of pocket back on so I have some worries about my financial. I had to leave my job because I am working at Nursing Home as CNA. My doctor told me the job is too physical and worry about to get seasonal sickness, FLU and GI track infection which I knew those are always the issue at work and many employees get sick this time of year. So, I am on FMLA leave for 12 wks but my treatment will be longer than that. During those 12wks, I can keep my insurance without premiums. But, without job, it not easy. My husband is full time student now so he is not working either. We are already applying for financial assisting and grants and some other services but I am not eligible to be STD (short term disability) from my job benefit and not eligible through Social Security either. At SS, we are not poor enough. Do you ladies have any suggestion for financial support? I already applied to Co-Pay relief (on-process), local SS (not eligible), at my work (not eligible but FMLA is good), Financial Assistant program through my hospital. 

Thank you!

candycandy

Hello Ladies, Me again.

Those who had Andriamycin , Cytoxine, and taxol, how long took you to recover? I am going to radiation after taxiol. How did you do? I have this concern because of my job. I am a CNA and working at nursing home. So My MO asked me to give FMLA and leave during Chemo. I talk to my supervisor to back to work after my surgery recovery and before Chemo and she told to better stay home because of they have major Flu and GI track infections going around and she thought it's bad idea for me to go Chemo and get sick from it. It made sense to me so I kept my leave on. FMLA just work for 12 week year and obviously Chemo takes much longer than that. Then, I go radiation. Do you ladies have any job like nursing home or hospital situation and back to job during taxol or during radiation?  What do you think? I am 33 years old..... by the way. I have no kids but my husband is full-time student and no income.

lawyergirl

candycandy, congrats on making it through your first treatment yesterday! I'm sorry that you have to worry about financial stress during this time. Unfortunately I don't know of any resources, but hopefully one of the wonderful women here can point you in the right direction. You may want to check to see if your doctor's office has a social worker that you can talk to. My office mentioned that was a possible resource for me, but since I plan to try to continue working full time using my accumulated sick days for chemo days and surgery recovery, I haven't talked to the social worker yet.

My first AC treatment went well yesterday. I had my port accessed on Wednesday for a blood draw, which was surprisingly awful. I nearly passed out. The nurse left the port accessed overnight, which was really nice because it meant less work when I got to the infusion center on Thursday. 

At the infusion center I requested (and got) a private room, which was really helpful given all of the cold cap accoutrements I brought along (including my husband and two friends, one of whom just completed her chemo/cold cap treatments). 

The cold caps were by far the worst part of the treatment. Hate hate hate them. I can't really even describe the sensation of putting a -35C cold cap on my head for the first time. F*ing cold. Super f*ing cold. But after having talked with my oncologist about the risks (basically none related to cancer, only discomfort) and benefits (hair! no awkward regrowth stage for years after my cancer is gone, a feeling of normalcy and control during treatment), I'm going to forge ahead with the caps. 

The Adriamycin injection and Cytoxan infusion were uneventful. I drank a ton of water and my morning was spent 100% either having a cold cap changed or walking to the bathroom. 

Home by noon and spent the next 4 hours on the cold cap routine (new f*ing cold cap every 30 minutes). I drank lots more water and tea, and had a light dinner. In bed by 8:30pm. 

This morning I feel a bit like I have a hangover (light headache, light dizziness, light tummy weirdness that's not quite nausea), and am more tired than usual. I go in at noon for my Neulasta. Time to take some Claratin!  

Hope everyone continues to do well. One treatment down!!

mcgis

desimone, i sure hopw you are doing ok. hang in there!

calmandstrong

This afternoon will be my first cycle of FEC. Feeling anxious and scared....here's to an uneventful first day!

To katiegrey, as so many others said, it is overwhelming at the the beginning. I was diagnosed a couple months before my 36th bday...so much information, so many unknowns at the beginning..a lot of "hurry up and wait" days..it gets easier once everything is filtered through and your brain and heart have time to absorb and deal with it. I'm a nurse and I still didn't understand all the medical jargon and terminology. Talk about it with your family/friends/MDs/us here. Cry, laugh and do allow yourself to feel every emotion your body wants you to feel. I find that helps. It makes it just a little bit more tolerable to know there are so many others going through the same thing and want to help and listen. Best of luck to all and let's keep the dialogue open and the conversation open  

tangandchris

Candycandy-

 

I would definately talk to the social worker at the hospital for help on this. Not sure what state you are in, but you might be able to get help on utility bills and food benefits. I know the financial stuff is just one more thing to worry about, and we are dealing with some of that too. There are churches and organizations that can help with things as well. It's hard to ask for help for some people, but that is what it is there for, emergency times like this.

Anonymous

Candy, here's a link for the American Cancer Society. Your surgeon probably registered you with the ACS when you were diagnosed. Just scroll down to where it says financial assistance. They paid $500 on my electric bill.

Do you have short term disability where you would get some income being off for treatment? The FMLA is for when you need time off for family. I would think you would be covered for BC.

http://www.cancer.org/treatment/findingandpayingfo...

Anonymous

Lawyergirl, did they give you a script for EMLA cream to apply an hour or so before your port is accessed? You put it on the port, then put a small square of Saran Wrap on it. No need to tape it. The Emla cream will hold it in place. It numbs the area.

Ladies if you're having any financial problems, ask to speak to a social worker where you get treated. Mine gave me gas cards and cards for Kroger. There's help out there. We have to be our own advocates.

Paula

paloverde

Did anyone have trouble getting Emend covered by insurance?  I just had a rather unpleasant conversation at the pharmacy.  I realize it's expensive, $300-500 per treatment, but I thought it was supposed to be much more effective than other anti-nausea meds?  

Got the nurse navigator involved and we'll see if there's some recourse re: having the MO get involved or prescribe a substitute.  I'll also have dex and zofran, but I was counting on that Emend.  

Edit:  we would not be eligible for financial assistance.  

rabbitvelvet

Hi,

   I start my first chemo next Wednesday January 15th; 6 cycles of TCH...then a total of a years worth of (H)erceptin and then rads.  Thanks to this site and others I have most of what I will need.  However I need the name of the company/website where I can send them my hair and they apply it to scarves or hats. I was told not to get my hair cut too close to the first chemo treatment so I had hoped to go to the hairdresser tomorrow, Sat.  I thought I should find out how to have the hair cut?, braided -or ponytailed or ?     

  Also I am electing to receive daily shots of neupogen  for ? 7 days after each cycle.  My understanding is that the bone pain is much lessened by stretching the drug out over time but I do plan on taking Claritan just in case.

thanks and it's good to have a sisterhood of January (& beyond!) chemo buddies

tekwriter

I am doing dose dense ac 16 weeks every other thursday with nuelasta shot on the same week as chemo.  So I don't think mine is the same as the CandyCane. My Dr. told me I would not be able to work during this time.  I am fortunate that I have paid for extended LTD all these years so my leave will move into that in March.  I am sorry y ou are having this trouble Candy.  Are you eligible for Medicaid by any chance?

Diamond_lil

Candycandy, I am a nurse unit manager and i will be working as much as possible during my treatment. I am not involved in continuous patient care, but my office is on the ward so I will be in contact with patients. Is there no provision for redeployment in another area for you, or assisting with administration duties? I know in my company we have been able to keep people working in this situation. On a personal note, still no S E's day 5! Getting small amounts of exercise, eating well, and I even had a glass of beautiful Australian semillion blanc last night. Sending peace. LIL

candycandy

Thank you sisters! Ok, I will see my social worker within few weeks so I will ask her about financial options. Otherwise, I have already a few thing on process now so I am cross fingers those works. 

Diamondlil, I thought about it and I may ask my supervisor about the admin options. I know we have social service and physical therapy sections that I can work too. My company is not big and those positions are very limited openings. Also, they are all tight in their budget. They are trying to cut off those positions since I start working there about 2 +years. 

candy

WildMarigold

Hi January sisters! Hope everyone is doing well. I had my dd AC infusion on Tuesday and am so incredibly nauseous.  I can't seem to shake it. Trying to get down soup, saltines and doing good with water but I feel awful. I'm taking my meds, hate to think what this would be like without them. I'm also burping like crazy! Is anyone else feeling this? Any suggestions for getting past the nausea?  Thanks! -a

katiegrey

rabbitvelvet - try this link, a friend just told me about it today. They make head coverings with hair - your own hair, or you can get a blend of synthetic and human hair. Then you wear your own hat over it. They also make a ponytail version for baseball caps: http://www.hatswithhair.com/Underhair-Halo-1.aspx

Here's another one where they sew the hair right to a hat: http://www.headcovers.com

I think I like this idea - I'm not much of a wig person :-)

Anonymous

AnneMarigold, call your MO. Even though it's the weekend there will be someone on call. They have a whole arsenal of anti-nausea meds. They will find the right meds for you. THEY DONT WANT YOU SICK! 

Paula

paloverde

candycandy and lawyergirl, thanks for sharing your stories in such detail!  Hope you're still feeling well.

tekwriter

I went in and whacked about 6 inches of hair off tonight all over my head.  My little daughter in law is going to help me straighten up the back a little tomorrow.  I now just have a cap of curls.  It feels nice actually and all I have to do is run a damp comb through it.

rabbitvelvet

Thanks so much for the info Katie Grey.....I just got off the hats with hair site and they have a neat video showing how to cut off your ' donations'.  Tomorrow I'll check out the headscarf site.

paloverde

tekwriter, you're blessed to have hair that styles itself!  That's great! 

Anonymous

Ladies have any of you who have started chemo had a problem with constipation? I found it helpful to take a stool softener the day of chemo and sometimes twice daily for the week following. With Taxol I was more likely to need an anti-diarrhea med.

Don't forget to eat yogurt or take acidophilus or a probiotic to prevent thrush and rinse your mouth with the salt/baking soda mix to prevent mouth sores.

Paula

calmandstrong

Great tips Soteria205. I got my first dose of FEC yesterday. Nausea was pretty bad overnight and slept very little. The meds weren't really helping all that much..but today has been MUCH better. Hoping it continues this way until the next cycle. I've been having some constipation already, been drinking lots of fluids and eating dried apricots, bran, etc. No problems with appetite or eating so far. 

tekwriter

I have.  I took on laxative and it didn't help much.  I have been drinking benefiber every night.  I was going to talk to my MO about on Thursday. I haven't had any mouth sores.  I wear a partial and I made the decision not to wear it during this chemo period.  I felt like it would worsen the chances of getting sores because it doesn't fit well. At this point I am a little afraid because my first two weeks were so easy.

WildMarigold

Thanks Paula! Luckily the nausea is easing up. -Anne

tekwriter

Hey Paloverde, I know, I just hope it comes back.  I used to hate my curly hair in the 60's but I have long since made peace with it.