Starting Chemo March 2015

avmom

((((((Arlene))))))

My spa day was moved from Monday to today, so I'm feeling rough tonight - nausea and very acid tummy, so far. Like Sharon, I was given a card with a specialized SE hotline to call, with numbers for business hours and an after hours 24 hour line. I have used it once so far, when I had a significant constipation event. Although that didn't work out well, it wasn't the fault of the hotline nurse, but rather the rural hospital that was the closest medical facility. The triage nurse on duty seemed to decide that if I waited long enough I would eventually be successful in moving my bowels, so I was stuck in the waiting area until the shift change, when the new triage nurse on duty had worked at the cancer clinic, and she got me seen pretty fast. By that time (over 6 hours), I had torn something inside from the straining, and that took some time to resolve. Not fun.

Because I live in a rural location, my spa days are split between the main cancer centre, which is nearly 2 hours' drive, and a regional clinic, about 45 minutes away. The first round is at the main cancer centre, where they have specialized facilities, to monitor any adverse reactions. Subsequent rounds are at the regional centre, and I feel that I am getting very superior care there.

For one thing, the nurse is always the same person. When I go on Mondays, I'm usually the only person getting chemo. Today, there were 5 patients, so it took a bit longer, and carried over until about 11:50. If you are there at 11:30, they bring you lunch. The regional centre is at the local hospital, so lunch is the regular hospital diet, but the food is pretty good. The supervising oncologist is also always the same, and she comes over to review how I'm doing, with her prescription pad ready. If anything, I freely that my SEs are being carefully watched and meds offered for any and all SEs. I've even turned down prescriptions where an OTC medication seems to be doing the job.

I hope all of you with SE issues are able to persist until you find someone who takes your symptoms seriously and you get necessary meds. This is new territory for me - before cancer, I rarely took anything, not even OTC pain killers. Now, I take so many meds, I refer to them as meals.

Gentle hugs to all

so-she-did

Diane and Arlene - my chemo brain got things switched around. Sorry I had it backward but my sentiments remain the same. Hugs to you both as you remember your loved ones.

so-she-did

Avmom - I like your term for all the meds - meals. Goes along well with the whole sandwich thing. I had my annual today and was asked to update my health information. I ran out of room on the form for all the meds I am currently taking.

KBeee

Bekah, Any change like that is worth a call to MO and/or breast surgeon. Take a picture each day too so that you can record if it changes.

I survived round 2 of AC; no major issues so far...hoping that continues. Wishing all a week of sunshine, blue skies, and few to no side effects.

My oldest DD knows my throat is always sore during chemo due to heartburn, so she took yogurt, spread it on a try, spread fruit on it, and froze it. She knows I like both yogurt and fruit, and that frozen things are soothing. It is WONDERFUL! I am grateful to have such creative, caring kids. Passing it along, because it is something that might be a simple and helpful treat for others.

Angiel

Good Morning Ladies. I have been lurking a while as I've read through your thread and thought I should finally say hello. Technically, I started chemo in Febrary (2 of 4 AC Dose dense); however, I ended up reading this thread over the past week or so and thought I would join up. You seem like such a wonderful bunch of supportive ladies and are active on this thread - very nice :-) I finished my last two 2 ACs in March and now am currently doing 12 weekly Taxols. #2 was yesterday. So I'll be on this journey through the end of June. So far, for me, the whole experience hasn't been as bad as I would have thought. I was able to fly to Grand Cayman 4 days after my final AC to enjoy Spring Break with my family and only had mild side effects - thankfully. Now that I'm on Taxol, things seem to be even better; however, I'm very "cautiously optimistic" with each new day. I am doing the Cold Caps for my hair. They have worked remarkably well up to this point but I still have nearly 3 months to go. I'd say I've lost 5-10% of my hair but others probably wouldn't notice. I will say the caps are a lot of work and probably the worst part of this process for me. I was spending 9 hours in them on my AC days but now with Taxol, I'm down to just 6 hours. They are unbearably cold (30 degrees below zero when worn) and I've come to the point where just looking at them makes me want to vomit. But other than that, I really can't complain too much. My biggest problems now have been insomnia and some bone pain which I've heard is pretty common. My tumor didn't shrink very much with the AC (but did shrink the largest lymph node involved) so I'm hoping the Taxol will do the trick. I'm scheduled for a bilateral mastectomy in August. That is so scary for me to think about, so I try to focus only on the present or I tend to get weepy, moody and find myself in a dark place. I've enjoyed reading this thread and it's really helped to know that there are so many of us fighting this same battle with so many positive outlooks. Have a good day ladies! Angie

Trvler

Hi Angiel: Nice to 'meet' you. Interesting about the cold caps. Right about now I was kind of wishing maybe I had done them. But I figured they were a huge expensive pain in the a$$ so I opted not to. Curious why you are finishing in June and having surgery in Aug?

Wow, lots have gone on since yesterday. I have to finish my taxes today but will try to respond later.

Love and hugs to those who have a visit to the spa today.

Meme117

Good morning from sunny PA hitting 70 today - I'm definitely taking my love bugs for a good walk. So far having a bit of trouble sleeping, steroids I guess. Feeling the nausea and yesterday the fatigue hit fast.

Hugs to all who have pain, itchiness and more!!

Anyone following the Rita Wilson story?

How do they determine how many nodes to remove? My initial biopsy showed no cancer but the pet scan shows activity in 2.

Trvler

There is a thread about Rita Wilson in ILC, which is the type of cancer she has.

SC_Coqui

Hi ladies, just lurking the past few days. I had treatment #3 last Thursday and the fatigue hit me pretty hard. I'm back to "normal" now and have been catching up with work. Even though I work from home on the more difficult days it's really hard to focus due to chemo brain. I keep reminding myself that this will be over in July. I have one more AC treatment and then my weekly T treatments through July.

I've been trying to focus a lot more on my son. He had a rough few weeks in school and I want to make sure that it's not because of lack of attention. Seems like he's having a much better week this week. We think he has ODD (Oppositional Defiant Disorder) and it gets worse when there's a stress factor. Me being sick probably made it come to light. Fortunately, by knowing what's happening we've been able to work with him to get his behavior under control. Better now at 6 than at 16!

I've also been dealing with just finding out that our next door neighbor's 17 year old son has bone cancer (in his knee). He's their only child and they're an "older" couple. She's managing with taking care of her dad who has dementia as well. He's such a sweet kid and we've started growing a bond with him. He loves hanging out with DH when he's in the garage, he almost sees him like a cool uncle that tinkers and likes to go off-roading. He's supposed to start college in the fall. I have to talk to his mom to see how she's doing but I also don't want to seem like I'm meddling.

Anyway, if you guys don't hear from me it's because I'm busy with work and my son. I'm feeling really great and fortunately the SEs after the 3rd day out from treatment have been minimal.

Hope everyone has a great week!

BBwithBC45

Hello Ladies,

Somebody wrote a few days ago about prune-like looking fingertips. Was it Italychick maybe?

I noticed that my fingerprints are changing! My cellphone won't read my fingerprint now, neither will my laptop. So, I took a look at my fingertips closely, part of them start looking like prunes, but the very tips are smooth, almost shiny and I can barely see any papillary lines. Weird.

I had my 7th spa yesterday, went by without any issues, thankfully. I couldn't sleep last night, must have been steroids.

I also had my inflamed wrist joint checked by a rheumatologist. Right now it's a mystery why it is happening. He ordered some specialized blood tests. The results that I have been able to look up so far look all good, so that's good news, that most likely it is not some systemic disease. I was told that chemo causes joint pain, but not joint inflammation, so so far we don't know what's causing it.

Angie - welcome to our board, fellow cold capper.

BB

TerryMarie

I've started the Herceptin and I can't believe the discomfort I'm going through. Chemo was Friday, the intense pain started Sunday afternoon and it was incredible. It's like bone and tissue pain times 1000. probably because I have pre existing issues in my lower back and knees. I can't believe the pain and when I look at other posts, it seems that this is not the norm. A lot do not experience this level of pain. I'm not sure I can carry this on. I kept taking Tylenol 3 then had horrible constipation with bad stomach cramps. Right now I have flu like symptoms with total body aches that go in to my mouth and head and legs and even the lumpectomy sight. I'm terrified considering I have to have this for yr. This is devastating.

BBwithBC45

TerryMarie,

Is your Herceptin infusion over 30 minutes by any chance? I read that slowing it down to 90 minutes can help the bone pain.

BB

TerryMarie

First one was 90 minutes , I don't know what to do with this , its unbelievable.

BBwithBC45

I do know that Herceptin may cause bone and joint pain, but I suppose that the degree of it varies for everybody. You probably will need to talk to your MO about this.

molly1976

TerryMarie, what other chemo drug(s) are you getting? I am on taxol/herceptin and have not had any bone pain.

TerryMarie

Docetaxel and herceptin i believe .

SpecialK

terry - it is more likely your bone pain is coming from the taxane drug than the Herceptin, particularly if your H was run over 90 minutes.

ComposMentis

Dear March 2015 Group--

I am doing some pre-reading, in preparation for the next phase of my breast cancer treatment, and I saw this thread and have read all of your posts from start to finish. I will probably be stepping up to the chemo stand in late May or early June (recovering from surgery until then).

I just want you to know that I find all of you to be incredible! You are so supportive of one another, funny and factual and honest...with so much dedication to pulling each other up and along and helping at each new challenge, and celebrating each victory. You are an inspiring bunch of women, and I hope that I can find something similar in the group I will join.

I did want to leave a quick question for anyone who might have the time--Can you tell me what you did to keep track of your medications and possible side effects? Did you have a standard format, like a spreadsheet with columns, etc., or did you write a notebook for each day, etc.? I was diagnosed on March 12, and since then, it has been a whirlwind of appointments, procedures, tests, meetings, more appointments, surgery on April 9th, and then, on Friday, the first meeting with the MO.

Best to all of you, and thank you for everything!

-Angela

KBeee

TerryMarie, Docetaxol (Taxotere) is known fro causing bone pain. I felt like I was in labor when I was on it. Luckily it passed in 3-5 days. I hope it improves for you.

TerryMarie

Ok SpecialK. I'll ask the doctor about the doxetaxel . It's not nice and I have 2 more of those left. Right now my mothers arrived to help me and I find myself overwhelmed with the support im getting , I feel so miserable yet so blessed to have a support system from family and friends. I feel so emotional right now and cry at the drop of a hat. Im very grateful for the advice and support I get from you guys also.

Trvler

TerryMarie: I am so sorry to hear about your pain. I am not taking that drug and I probably can't help you there but I have suffered with constipation for my whole life off and on and I know how that can add to the misery. Ask your doctor or a gastrointerologist about a drug called Linzess. I know you are probably thinking the last thing you want is another drug but this has been a miracle cure for me. It took me a while to get the dosage right. There are two strengths. 145mg and 290mg. And here is the most important part. If I don't take at least one daily dose of Miralax with it, nothing. nada. It doesn't work for me. Occasionally, I get a little backed up and take two doses of miralax. Always works. But here is why it is good. It takes away any and all stomach pain from going after being backed up. I take one capsule in the morning, and I am usually done by 8:30 am. You take it first thing on an empty stomach. It is not a laxative and apparently neither is Miralax. It won't tear up your colon like laxative will. I hope this helps in some way.

so-she-did

ComposMenti - Welcome! I wish we didn't have to meet this way but I'm glad you've taken a look at what is coming down the road. When I went for my chemo education they gave me a sheet that had two columns, one for morning and one for evening, and the rows were labeled with Day Before, Day 1, Day 2, etc. This helped a lot since most of the meds will drop off at a certain point after each round of chemo. I kept a separate piece of paper for those "as needed" meds and meds that I took more than once or twice a day, like pain meds, and I just wrote down when I took each dose so I wouldn't forget and OD. Good luck to you!

TerryMarie - I haven't had Herceptin so I cannot answer to that but I have had severe bone pain with the Taxotere and Neulasta. My MO said that I probably got hit hard with both the Taxotere and Neulasta bone pain since it was so bad. A slight adjustment with the days I took the steroid (dexamethasone - or however it is spelled) really helped the next round. I still have the bone pain but it is at least manageable with pain meds this time. The first go round I couldn't manage even with pain meds and would even be moaning in my sleep when I could actually sleep. Talk with your MO and see if things can be adjusted to help minimize the Taxotere's bone pain SE. I have also found that if I keep moving it helps. Tough to do on those days when the fatigue truck keeps backing up to get another go at you.

Oh, and I think we should add a fatigue truck to the charm bracelet!

IndyGal35

I must've picked up a bug over the weekend. Bleh. Like I needed another challenge! I took the day off work to rest and see if I can cough this crap out before it settles deeper in my lungs. I need this gone by my spa day next Tuesday so they don't delay me.

Compos, one of the first things I did before I started chemo was to make a word document for DH. It contains a list of my allergies, surgeries, daily meds, supplements, blood type, physicians, etc. I add to it as things change. This info is invaluable if you end up in a situation where you need to be treated while your MO isn't available.

I also recommend making an Excel document that lists every single appointment you have, how much has been billed, how much you owe, etc. The medical expenses don't feel so overwhelming if you are very organized and keep on top of it.

So much of this is out of our hands. I find that it helps to have an ounce of control over something - even if it's just a spreadsheet!

TerryMarie

I will take the advice , thanks guys, I feel less terrified and trying to be more hopeful and less wniny! I'm going to talk to the doctor about the doxetaxel and find out if something can be done to decrease the SE's. Freaking brutal.

SpecialK

Compos - I used these sheets from the American Cancer Society to track side effects from chemo.  I printed a new set for each infusion and found them really helpful.  I know there are also some apps you can get to track meds but there are also printed sheets for that if you find them easier to deal with.

Chemo side effects worksheet:

http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf

Medication log sheets:

https://www.bcbsri.com/BCBSRIWeb/pdf/MM_2086.pdf

http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM095018.pdf

Jackbirdie

indyGal- such a bummer about the bug. It could be a chemo SE. I often get flu like symptoms fever, swollen glands and sore throat. Regardless, rest and plenty of fluids. A hug going out to you

TerryMarie - Ditto about the pain. Everybody has already heard this but I am not a fan of Tylenol ever. But during chemo even more so as your liver has so much more to process. If you can get some real meds from your mo. They might try to hi move you Mvicodin of Hydrocodone but that has Tylenol in it too! so I always refuse that on the basis of liver pressure during chemo and ask for oxycodone instead. But so very sorry you have so much pain. You shouldn't have to feel this way with shays available out there for pain.

Love love LOVE the truck charm! The bracelet is on its way to Diane (btw D how is the hand pain today?)

Joanna, thanks for checking in. You are s good Mom. Best wishes to your boy. I'm sure even though he is only 6 this indeed could be a stress trigger for him. Hugs for you both.

CompisMentis- one of my all time favorite usernames! So sorry to meet this way. I'm glad you find this thread helpful and that you honored us with your lurking and reading the ENTIRE thing! You are most welcome here and look forward to getting to know you. Xoxo

SueH58

So I'm psyching myself up for my chemo, although I don't see my MO until tomorrow.

I've read from you that water with raw honey and lemon helps with mouth issues. I just read about raw honey and how healthy it is compared to processed honey. So I will get some of that. I thought I could also mix that combo and put it in tiny ice cube trays and suck on it during chemo. Just a thought.

Also, has anyone tried ginger crystals for nausea? That, of course could also be added to the honey lemon tea.

Just some thoughts.

Angiel

Trvlr, ....because of the size of my tumor & the number of lymph nodes involved both cancer centers I visited recommended having chemo first in an effort to shrink everything in order to make the surgical part better. I guess it's called neoadjuvent chemotherapy and is pretty common in situations like mine. After chemo finishes, I get a 6 week break and then move to surgery. My primary surgeon is on vacation early August, so I got bumped back 2 weeks. Then, I'll get another 6-7 week break and finish with 6 weeks of radiation. Once completed, I need to wait 6-9 months to begin reconstruction. So not how I thought I would spend 2015 and the better part of 2016. But like I said, I just look at one day or stage at a time....keeps my center.

so-she-did

What do you think? A dump truck sounds appropriate.

Italychick

Amy, awesome charm!

Sitting in the chair pre-drugs going in. Blood work all perfect, woo-hoo! So I'm a go for today. They have a private room and it wasn't occupied today, so they gave it to me. So I'm in here working away in my own private office!

Slept great last night, even with the steroid, so that helped a lot. Plus, seriously, San Diego is so gorgeous right now that it is easy to be positive. Except too many bees lol!

Katy, I will send you my address for the bracelet. I want in on that too!