Starting chemo July 2014
Comments
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Coyote –
glad you made it home safe and your property was spared. Too much
adventure in one summer, eh!Thanks
ElaineTherese and DancingDiva for the info on dose dense. I will be going
dose dense with Taxol.Jennliza,
wow...whaaat! I am so sorry for what you are going through. I would reach out
to a patient advocate or ombudsman. We had similar situation with a
relative about 5 years or ago and the advocate was a miracle worker. Thinking
of you!Giles, ditto Coyote, Mags and the group. Glad you got
through to the MO but I would still keep your regular doctor or PA informed so
that they can help with the prescriptions, etc. I have had to do that a few
times and the PA had them order that night.Joeysmommy – good luck on the taxol treatments. Love the quote and hat!
Sending hugs and positive thoughts!
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So here's the news: doc gave me two choices. I could wait two weeks and see where the liver levels are, then he could reduce the dose for round 4. Or I could stop right now. My partner asked, "What would you do?" He said, "I would stop now." There's a lot more to the story, but that's the essence. So here I am. Nothing has felt this sweet for awhile.........
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I can't wait to see all of you posting something similar...
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*July gals all doing the Snoopy dance for Mumford*
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YAY Mumford!!!
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YaY! Mumford!! Ring the bell!!!!
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Whoo hoo Mumford! Look at that smile, so happy for you.
Giles, I'm sorry your having so much trouble. My advice is dump those lousy docs and find someone who cares about their patients. I dumped my surgeon and oncologist after my 2nd surgery and it has been wonderful with my new docs. They are caring and informative. You are the boss, don't let them treat you this way. I hope everything works out for you. We are all here for you.
I hope everyone is hanging in there and side effects are minimal. Hugs to all!
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Great photo Mumford, doing my happy dance for you!
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Uhuu Mumford 😊😃👏👏👏🙏🙏👍👍
Very happy for you!!
Best wishes on your new beginning .
XO
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Mumford; Yahoo! Ding, Ding, Ding! I'm certain there was a sigh of relief.
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Mumford -- such good news! And, great that you have a doctor who is so willing to give a frank and honest answer. Woo hoo!
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Yay, congrats on being DONE!!!!!!!
I am appalled at the attitude some of you are getting from your doctors. Of course it isn't always possible to switch, for insurance and /or location reasons, but I hope you can find patient advocates to help you through. I'm going to hug my onco next time I see her.0 -
Just started perjeta Herceptin and taxotere. Its been 6 days. Even my eyeballs hurt. Any tips on how to get a little relief.
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Hey guys its been awhile, had a 3 day hospitalization after round 4 DD AC nearly missed having a blood transfusion, had my first DD Taxol last Wednesday and its been kicking my butt too guess thats to be expected when you are so weak already...
Had to have a mammogram Monday to see how well the DDAC did and ended up having 2 mammogram and 2 ultrasounds... the tumor I originally had shrunk considerably but now there are 2 more!
I'm about ready to cry, give up, idk... the red devil almost killed me but 2 more tumors grew during that time?!?
Never thought of it before because chemo is supposed to work... what if it doesn't?
Anyone else have tumors grow during chemo?
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Theamarie, welcome to our little humble abode. You will find this to be the most welcoming and supportive group of women who, even though we are all going through the most trying time of our lives, encourage and lift up each other. Jump in with both feet and tell us about yourself and your journey. I have only the taxotere in common with your protocol, and I can tell you some of it's most annoying SEs are teary eyes and runny nose. Others have the other chems, so they can let you in on hose SEs. One of the most important tips I can give you is to make sure your docs know what you're experiencing, as they are there to treat the side effects as well as the cancer. I see you are stage IV, do you have mets?
Mumford, I was telling DH about your ringing the bell and he said I needed to send him an email at work to remind him to take off on my last tx day so he could be there when I did it. I have not let him or my cousin stay with me during tx as it is just boring and I listen to music and play solitaire and look at Facebook. Cousin drops me off then comes & goes as church is close by and she does stuff there, and goes shopping and stuff. Last time she brought me a huge chocolate shake from a nearby dairy place to cool my mouth during the red devil push. But I know they will both want to be there for the bell.
My eyes are doing a tag team twitch today. Right twitch, left twitch, rinse & repeat. Annoying and distracting.
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con grad mums.
Boxo you are correct, you can't always change, I changed insurance when my first surgeon left me on the or table and walked out. I was at my limit for the year with that insurance, so I had to come up with another limit, so her we are again at my limit again, $6000 out of pocket this year, I just can not change again until next year. Also, I did fire my second surgeons, when he refused to pull the drain out, even though it was infected and I was in severe pain. I fired my first onco because he got me fired from my job so on top of all this cancer, I am out of work and have financial stress. My onco refused to see me any other day but one saying he would postpone it by two months if I did not except that appt, then he was more than two hours late showing up for the appt, and he continued to answer his cell phone while talking to me for an hour, telling me this was only precancerous and he was 100% sure of that and nothing at all to worry about and I would not need any chemo or rads. And it definately was not in my lymph nodes.
All I can say is Obama care does not seem to be working for me, $317 a month plus copays, plus $3000 before they cover everything. Here all you can get is HMO's, and the one I have is claimed to be a 5 star. My experience is the worst of the worst. I know it should not be this way, family says to fire them all, change, but all I want at this point is to get thru treatment, one more chemo and on to rads, good thing is HMO does not have rads on staff so I am going out of service to who they say is ok, but so far they are nice and the doc seems very nice, only met once so far but she has more personality than all the surgeons and onco in the HMO together. So if I can get thru one more chemo. And move on to rads, then I will be done the day before thanksgiving and jan I can pick another HMO. Also after it is all said and done and I move on, I can then think, sue or not, I have writing down everything, I have used my iPad to record, like when they promised me three times before surgery that this was not cancer, or she. The urgent doc saw a child I stead of a guide dog. Or when the nurses told me I could not leave because there was wires in me, which was a lie, no wires where in me yet they refused to give me my cloths and allow me to leave. That with all the paperwork that is illegal, since when they ask me to consent for anything even surgery I write, can not read and was not read to me, not in Braille and I am legally blind and then I sign my name, I don't think any of the paperwork will hold up in court. Anyway, I try hard at this moment to just go with the flow, keep complete documents, try to email so I have a copy of there refusal to answer, and get thru it, later when I am not fighting cancer I will come back and fight if they where incompetent.
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theamarie - I have an extra chemo drug, Carboplatin added to my every 3 week drip, along with all you are on, but here is what works for me so far. Check with your Medial Oncologist, MO, as I am not a doctor.
Bone / joint pain - If you have the Neulasta shot the day after chemo - I can't remember exactly how to take it, so I fill my am med container with it for the whole week, my chemo is on Wed, so I get it a few days 1st and a few days after. Although I've had some pain, I haven't had much. I haven't used any of the class I pain killer my MO prescribed before chemo for this.
Chemo can cause mouth sores, so make up a bottle of 1 quart water, 1/4 tsp salt, 1/4 tsp baking soda and rinse and gargle frequently. I have next to kitchen sink and my bathroom, whenever I walk by, I do a rinse gargle, so far, only had 1 sore w/ cycle 2 and 1 with cycle 3.
Buy Biotene toothpaste, your normal will foam too much and make you more nauseous. Floss regularly.
Constipation (C)- Chemo seems to stop the intestines from working initially, so chemo day, at night, 1 dose of Miralax mixed per instructions in any liquid, if nothing the next day, then at night 1/2 bottle of magnesium citrate mixed with same amount of punch Gatorade. It is awful, so drink fast. The next morning I woke up and spent 1/2 hour on the commode, BUT no pain, just liquid stool coming out. Although this sounds gross, it is so much more comfortable than being constipated when the diarrhea kicks in.
Nausea, take the meds, if the 1st one doesn't work, call MO and get another, if that doesn't work call and get another. Many like Emend, I haven't had it yet, but think I will ask next time.
Heartburn / reflux; if you have it, call and get an Rx for something. I'm on Protonix (pantoprazole), although it is supposed to be time released for 24 hours, I take a 20mg in the morning and one in the evening. On the worst days, I also take a dose of carafate before bed. It is expensive on my Rx plan, (over $100) so just ask for a few doses. If your MO can't write it that way, then ask the pharmacist to repackage it with just a few doses, they can do this.
Diarrhea (D) - Take 2 Imodium at onset, and 1 each additional 'bout', up to (check with doctor) a day, but, if it is bad, and you need more call and get an Rx for Lomotil. Use the others for the non bad days when you only get 1 or two bouts. I try to drink 1/2 water 1/2 Gaterade when the big D is going on to stay hydrated. VERY important to stay hydrated and renew some of the lost salt. My MO says if I eat salty things with water that is OK too. Salt helps the water go to the blood to reduce dehydration.
Gas - If gas pains are an issue ask for an Rx for Bentyl. I haven't needed it, because this cycle I got the C under control, so the D was no where near as painful.
Dehydration - If the D has been bad and you feel horrible, or you just haven't been drinking much, an infusion can help. Just call the nurse line and they will get you in for a bag of fluids. If nausea is bad they can add IV anti nausea meds.
Sore nose - get a SALINE only nasal spray, use reguarly. Wipe with alchol after each use, so the nose peice stays as sterile as possible. We message board girls, seem to think some of this is due to the loss of nose hair. Also, if you get a sore or scab inside your nose, let the doctor know.
Irritated eyes / Dry eyes - my MO says just squirt normal sterile saline, the big bottle you get for contacts, not the cleanser. My eye doctor says Systane lubricating drops for day and ointment for night, others have said artificial tears are what you are looking for. IMPORTANT - not 'get the red out' type drops, you are trying to lubricate your eyes.
Drippy / weeping eyes - No solution, but maybe if I did the eye drops it would help. I haven't bothered with that yet, just too much junk to remember.
Sores / wounds not healing / lumps that are red or hot - may be an infection, let your doctor know ASAP.
Take a probiotic - your gut is all messed up with the C and D If you can eat yogurt do, and make sure it has live cultures
When hair starts to fall out day 14 - 17, cut to a short length, mine is 1 - 3" and I have about 5% of my hair still. Very scary looking. Don't shave. Those who shave seem to have more issues with scalp infections (knowledge from reading lots of boards, my doctor has not told me this, so your choice obviously) Also, your wig won't feel quite as bad.
Neuropothy - pin pricks, itching, burning, numbness - seems L-Glutamine powder is helpful. I haven't started it yet, as my pharmacy didn't have it. Search here there is a link to Amazon for one.
Insomnia - who knows. On bad days I take the lowest dose of Xanex, as my mind just doesn't turn off. Also, I get hot spells when I do go to sleep, so they wake me.
Get to a Look Good Feel Better class, for free makeup, application instructions, scarves and possibly a wig. I'd say you should be OK day 10 -21 to do this class. http://lookgoodfeelbetter.org/programs
Although a healthy diet is always the best, this is chemo. You need to eat and drink and keep your weight on. Do whatever you can to do this. I loose 10 lbs at the beginning and spend the next 1.5 weeks trying to get back to my chemo day weight.
I think that is most of it...
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Knmtwins, as always, excellent resources! Theamarie, I think that first item, about pain with the Neulasta shot, is missing the med that helps with the pain, surprisingly it is Claritin. Taken once a day a few days before and after, it seems to reduce or eliminate the pain caused by the bone marrow boosting the production of new cells. I've been on rx clarinex for years for allergies and it does the trick for me.
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Thanks to all of you for your good wishes and congratulations. I woke up this morning thinking, "Is it true?" I really am excited to hear all of your bell-ringing stories and yes, Mags, make sure your favourite peeps are there to witness the big event. I have to tell you all...the most moving thing after ringing the bell was to hear distant applause from the chemo suites, the hallways...even the floor below as there is an atrium open to several floors and the bell can be heard from a distance. Both my partner and I started to cry when we heard this. You all deserve it so much for all of the challenges and, yes, suffering that you endure. I can't wait to applaud each one of you as you cross the finish line (even if you take the shortcut, like me).
Love to all and happy Wednesday.
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Woo Hoo - 3 cycles of chemo are working!!!!!!!!! Thank you God!!!! My summary - had been 2.8 x 2.5 cm, now 1.7x2.5cm. Below is the Report, what do you think the thing about axillary lymph nodes means? What does the recomendation mean? See, one step in the right direction, all sorts of new questions... But yea and I love my hospital's new system where you can login for results!
"FINDINGS: Patient continues to demonstrate a spiculated lesion in the right breast as seen on image 49. There is a biopsy clip within it. This is a proven cancer. The peripheral enhancement seen of the cavity on the prior study is diminished consistent with response to therapy. The overall size of the lesion is now 1.7 x 2.8 cm including the small area where the clip is situated. On the prior study, the overall size including the associated cavity was 2.8 x 2.5 cm. This demonstrates interval decrease in size. No additional foci of enhancement are clearly identified. There is a small area of rim-like enhancement consistent with a cyst. This is seen on the prior study. T2 signal is seen to correspond to this area. This is seen on image 89.
Small axillary lymph nodes identified that do not meet CT size criteria. No internal mammary chain adenopathy.
IMPRESSION: Findings consistent with response to therapy to the known biopsied malignancy.
BI-RAD CODE: 6-KNOWN BIOPSY-PROVEN MALIGNANCY
RECOMMENDED FOLLOW-UP: 4-FURTHER DIAG RECOMMENDEDRLoc: A"
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kmntwins -- good news! No idea re: the lymph nodes.
ChaosRains -- sorry to hear about the two new tumors
. You'd think the chemo would prevent such growth, but who knows. Like you, my cancer is Grade 3 and was "growing like kudzu" in the lab. What does your MO think? Does he/she offer any explanation?0 -
Chaosrains, we must have posted at the same time as I didn't see your post until ElaineTherese mentioned it. Sad face! I do know that my tumor was measured on the u/s and MRI at 3.8cm and grade 2 but when they removed it it was 5.8cm, don't know whether that was just the difference between imaging and actual size or it actually grew 2cm in the month between. Are they going to biopsy the other two? What is your ongoing tx plan? Rads? Mx? Lx? Will this change all that?
I'm curious about something, though. As an older person going through this, I never considered having reconstruction and I'm really glad I didn't. My surgeon was all in favor of doing a lumpectomy only, and when I insisted on BMX she wanted to do recon, and I flat out said, no recon, not ever. It seems, however, that she left enough skin for that, contrary to my wishes, so that I now look like I have deflated C cups and I will have to have surgical revision if I want to be really flat. And they are full of knows and lumps which I assume are scar tissue. But here's the thing: it turned out that the on site pathology showed cancer cells all over both breasts and into the chest muscle tissue, so a lumpectomy or single mx wouldn't have gotten it all. My understanding about recon is that if there is a recurrence, recon would make detection and diagnosis more difficult, not to mention, how would you even find a lump? And it's not like they would actually be replacements for your real breasts, as they would have no functionality. The nerves in my chest are so damaged that I actually have no feeling in my chest area at all. In any case, as far as "looking normal" as a reason for recon, I've never even bothered to be fitted for foobs, and I can honestly say that even people who know me don't look at me funny and no one seems to notice that I no longer have a bust. So, I'm curious. Who had recon, or not, and why, or why not?
I hope no one finds this offensive.
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chaos - oh no. So awful. Do you have any info about the 2 new? Are they sure they are cancer, or chance they are something else? Is it possible they were lurking there all along unnoticed? This happened to my father who has liver mets from a separate cancer.
I'm sure this sounds impossible to see as good news, but it IS good news that the primary has shrunk considerably - means this one is responding for sure. Please keep us updated.
Mags - I had immediate TE reconstruction with my BMX. You asked why...a totally personal decision. Mostly a desire to feel normal - at work, socially but also when I look at myself and am intimate with my husband. No, I have no feeling, and yes recon has been a pain (see hospitalization a few weeks ago), but for me worth it. I am 39, fit and didn't want people looking at my chest for the wrong reasons. I also wanted to (as much as possible) avoid a daily reminder of the stupid cancer. And I know I wouldn't have the patience for prosthetics. So, much like my decision to do cold caps, recon is about making me feel as 'normal' as possible for the rest of my (hopefully long) life.
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Giles, I can't speak to your other experiences, but keep in mind that $3,000 is NOTHING. I just got a bill for $75,000 which included my surgery, hospital stay, and first visit to the ER. I still haven't seen the totals for my second ER visit which reslulted in my being in the hospital for 3 days. I only owe a copay on all of that, but my point is, if your insurance makes it so you only owe 3k once everything is said and done, then it's working. Perhaps not on the level that private or employer-based insurance would, but it's a heck of a lot less that your be paying otherwise
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Onco has to meet with board of specialists about it so I'm awaiting to see what they decide... biopsy? Back to the red devil? Full of questions with no answers...
When I started this journey I was dead set against mastectomy... everyone I've ever known personally that had one ended up with lymphedema had to wear a compression sleeve or suit... all I ever heard were problems... I'm still young, 39 but still feel like high school was last year... was very active until this and mastectomy just didn't seem like a good idea for reasons of vanity either... now, I'm at the point where I just want them gone! I haven't given much thought to reconstruction can't decide how I feel about it one way or the other logical and emotional I struggle to find the middle ground
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Mumford,
Woo hoo!!!:-)
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mags,
I had BMX too, and I told my doc I did not want reconstruction. Partly because of age, and partly because I wanted to be done with mammograms (which never found my over 1 1/2" tumor even though I had them every year for 14 years.) I didn't want to keep my "healthy" breast and I do not want a silicon boob/s in a mastectomy bra. I have a lot of numbness now and I don't see the point in having fake breasts I can't feel. And I'm positive for the CHEK2 gene which doubles my risk of breast cancer. I'm also grade 3, so if it does come back I want to be able to find it fast, not let it hide behind implants!
Shirley
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Just got back from having my blood drawn for the genetics testing. 3-5 weeks for the results.
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Mags - I've had breast implants for years - I assume recon is similar. My cancer showed up on a regular annual mammogram - it was too small for the doctors to feel even after they knew exactly where it was located (.6 cm). I had a lumpectomy (breast conserving surgery) which is what my team of doctors decided for me. When they told me that the path report came back with HER2+ cells in the margins and that I would have to have chemo instead of just radiation which I was told in the beginning, (before path report), I asked if I could skip chemo if I had both breast removed. I was told I would still have to go through the whole chemo experience which I was afraid of (but now that I'm in the big middle of it, it's not so scary, it's just my new norm).
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Puffin -- I am also awaiting genetic test results. My insurance company put up a big stink about paying for them, but MO thinks she can get the testing company to cough up some results for a reasonable sum. I originally did a Scope swish, but MO ordered blood tests for her latest effort to get results.
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