Starting Chemo May 2019
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Happyanyway, Please let us know how you are feeling after your chemo. Hope it doesn't spoil your weekend. Glad you're trying to stay warm during your icing.
Mountainmia- I pray that your infusion goes on without complications today. Keep us posted.
I am not looking forward to my next treatment next week, as I am physically feeling good this week. I am having deep fears of recurrence as well , however, but I guess that is normal. I just have to believe that the chemo is doing its job.
Stay strong everyone.
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Melza89, Hanging out with my kids and husband. We played UNO for an hour and a half last night. On my down days, I watch happy shows. No more true crime for me. Too stressful. I drive with the radio loud and the windows down and sing along. No, I don't have a good singing voice!
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HappyAnyway - Thanks for the info about hair. That helps! Good luck with the rest of your infusion!
Another question - What have you been told about swimming in a lake during chemo? I know there is some risk of picking up something, but my white counts are good, and I have no open sores. Lake and boat this weekend for the holiday!
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Hi all. I'm home from my FIRST INFUSION!!! Wooohooo. It worked, at least in terms of actually getting infused. More about that later.
Thanks to ALL of you for your good wishes on it. I am relieved, I'll tell ya.
Alice -- how is the sister-in-law visit going? And Happy Birthday, btw. I missed it yesterday.
melza, I'm so sorry to hear of your mets. How shocking that must feel. You're right to feel mad, or sad, or any way at all that you feel. None of it's wrong. Just remember, though, it's not your fault.
britt-- you are very welcome here. You might also want to check in with the June group that's just started. I will be trying to keep up with them, too.
SJWhitten, I'm glad you're feeling better, and how awesome that you can look forward to seeing your daughter soon.
godisone, thanks for the good wishes. I know stress can make it all more difficult, but sometimes it's a basic biology issue. I just can't use the taxotere. Nerves didn't cause me to react to it. But the Adriamycin worked fine for infusion today, so it's a non-issue now.
HappyAnyway, is this your 2nd or 3rd? Either way, YAY progress!!
As for me, I had a 7am blood draw, so started the day early. They gave me 2 kinds of pre-meds. One is anti-nausea (like zofran) and the other was steroid decadron. After an hour the nurse started the A infusion. It went easily and pretty fast. Once it was done the cytoxan was started, and that was set for a half hour. So both of them were quick. I think including the hour waiting time after the pre-meds, and a few more minutes to apply the Neulasta OnPro, it was about 3 hours.
The pharmacist came to go over side effects. I'd heard some of it before of course but it was good to have it said again. He mentioned getting back to normal life activities and I asked him about having sex, since that is a normal life activity! He was surprised and I said, maybe people don't ask you about that much, and he said no. But he said at least over the first few days use a condom. And no anal sex at all, not that I was planning on it anyway!
I had lunch when I got home, a half sandwich and 3 prunes, and another glass of water. Now I'm beat and think I'll take a nap. hugs all around
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UpstateNYer, hello friend! My angry lump is barely palpable. As a matter of fact, it's not angry anymore. No pain, no itching. My MO told me that the nerve damage may be permanent. So glad it's getting better. Certainly makes it all worth while.
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MountainMia, best news of the day! I'm tearing up. Yay!
My 3rd! Only one more AC. So grateful.
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SJWhitten, I was told as long as my port incision is healed and my blood count is good, that I can swim. Don't take my word alone.
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Thanks for the warm welcome here everybody. It’s so great to find comfort in knowing there are other people out there who understand you.
melza89, I need a good distraction too.... I’m thinking wine?
I’m wondering if anybody has any experience with Lupron during treatment? I’ve heard it can have some nasty side effects and I’m slated to have my first injection on Monday. I’m trying everything I can to preserve my fertility... I’m 25 with no children and always planned and wished for one child in my 30s. Well, I did an egg retrieval this morning... ended up with 5 eggs
I feel so hopeless. Hence the Lupron is to hopefully help protect the eggs i have left? Sometimes you just feel like crawling in a hole..0 -
Brittandherboobs, I think it's good that you were able to save your eggs. 25 is young, no doubt. Hopefully your youth will help you tolerate treatments with minimal SE. I have read about other women on this site that have moved beyond cancer and started a family. I wish I remembered the specifics. Hopefully you can connect with some of them, too. Best wishes and know that we are here for you.
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britt, in the forum on family and family planning, there might be threads on fertility issues.
https://community.breastcancer.org/forum/157
Also you can use the search function on the left bar to track down more info. Good luck.
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Thanks for the bday wishes. It was a sluggish day but ended with cake! Surviving the sister-in-law visit. She’s fought the good fight too so she gets it.
I’ve stayed ahead of side effects better this second round. Actually feeling fairly decent right now. First round was much rougher and SEs lingered way too long.
My hair started falling out big time yesterday. Even though I had It buzzed a few weeks ago there was still enough there to be a pain/messy. So I had husband buzz it again tonight - only shaver ran out of juice - so my head is half shaved and looks ridiculous! Laugh at myself every time I look in mirror. Oh well, will try and fix tomorrow.
I’ve been trying not to fall into the melancholy thought that nothing is ever going to be the same. But it keeps creeping back into my head. I need to spin it into my mind of the possibilities that are ahead. Trying...
I definitely need to find some distractions. Thanks for the ideas.
Thinking good thoughts for you all
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Happyanyway-glad to hear your tumor is responding to the chemo. That is great. Also that your nerve damage is getting better. Nobody wants permanent se's.
Mountainmia- our prayers were answered, you were able to get your infusion today--yippee! The third time was the charm. Hopefully se's will be minimal for you.
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SJWhitten - which lake? Norris is my happy place. We have friends with a place. Look forward to floating once I get through treatments.
MountainMia - thinking of you. So glad you got your treatment. Fingers crossed minimal SE
Britt - welcome to this group. Sorry you have to be here. Don’t give up hope on the baby - things will work out.
HappyAnyway - 3 in the books! AWESOME!
Upstate - the dread of the next one is awful - I just kept chanting ‘Kill the bad cells!’ And ‘you got this!’ Enjoy your good days! You can do it!
Happy Saturday everyone. I’m working to find as much joy as possible today
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SJWhitten, Norris is beautiful! My girls are in Girl Scouts and go to camp Tanasi which is there. It's only about 35 minutes from my house.
Have a blessed day, everyone.
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Happyanyway- glad you have 3 down, I will have 2 done as of next Wed. - halfway point for me--yippee!!
Alice- thanks for the positive vibes, you made me feel hopeful and better😊 I will do the "kill the bad cells " chant at my next chemo on Wed. Funny about your half shaved head-too funny- did you correct it today? Happy belated birthday.
Mountainmia- let us know how you're doing. Hope minimal se's for you.
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SJWhitten, have you visited the Museum of Appalachia? It's near Norris.
UpstateNYer, did your MO offer any meds in addition to Claritin for your SE? I hope you you have minimal SE this time.
I saw another shaved head woman yesterday while I was receiving my chemo. She smiled at me when she was leaving. If I see her again, I'm going to introduce myself. It would be nice to have a friend near me going through a similar experience. I don't really want to join a support group in real life. Although I love people, I am not a social butterfly. Have any of you joined a support group other than online?
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I've wondered about a real-world support group, but I don't think it's for me. In some ways I find this diagnosis and treatment really isolating, so I think it would be nice to know others more personally. But one of the things I'm loving about this group is we can drop in when we feel like it... I guess a clear way to say it is, here I don't need to be compassionate and empathetic on schedule.
If I'm grumpy or take someone else's comment badly, I can ignore it easily. That's harder to do in person. How I'm doing: okay so far. Went for a very short walk this morning, just a couple of blocks away from my house and back. Slept in until after 7, so more than 9 hours sleep. Another nap this morning of a couple hours. My tummy feels a bit off, but I'm trying to stay ahead of it. The pharmacist said I could start the compazine as soon as I wanted yesterday. So I had 2 yesterday, 1 this morning. I guess that might be what wiped me out so much.
Waiting now for the Neulasta OnPro to inject in a few minutes. This time of year I take Claritin anyway, but I took another of those.
I did work for a bit on my current quilt project but my stamina for it isn't great.
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Good points regarding real life support groups, MountainMia.
My Neulasta is clicking as I type!
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HappyAnyway, do you feel it when it begins? Or is the only poke when it's applied?
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Only when it's applied. I took mine off in the shower the previous two times. This time I'm going to saturate it with water and apply lots of soap. If that doesn't work, I'll jump in the shower.
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The rubber band sensation, when it's applied, is the catheter being inserted. There is s no sensation for the dose the next day. Just clicking, and clicking, and clicking...
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Just heard the loud beep indicating that it's done.
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Got it, thanks. I'm done now and it's off. Now time for another nap...
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hello everyone sorry for long rant, well sorry not sorry kinda ... I am at a stand still... too much Drama, long rant, dazed and confused ...My chemoteach was May 7th, went over the TCHP and Neulesta, signed my agreement and came home. My first round was May 13th, 8 hours long and then at 4:15, they close at 4:30, the nurse says you will have to come back tomorrow for your Udenyca shot.. I was like wait what, what is that, she explained it's a WBC booster. I open my folder and tell her I don't have that, here is my treatment plan, I am to have the Neulesta OnPro.. so she went to check and then she came back with the NP and they explained my Insurance Denied OnPro and approved Udenyca it's a biosimilar and it's cheaper ... cheaper, when your life is on the line does not comprehend in my head at all ... mind you I have employer Insurance and Medicaid back up AND a local county grant... I get so upset because I know the TCHP & Nuelesta, I googled the shit out it and read thousands of like Pink Warriors have success with it, over course I get upset and emotional, especially after 8 hours of toxins dumping into me... I was so upset I think I hyperventilate LOL, this my life your messing with!!
So we came home, I started googling etc and knowing all medications have a patient assistance program so I took the chance and applied, got immediate approval. I called Onc the next morning and asked them to appeal, and told them before I make the drive (1.5 hr of back roads) I need to make sure I am getting the Nuelesta, they said Drive up for your appt at 4pm it should all be straighten out... HA ... We got up there and NOPE they still trying to sell me this biosimilar crap ... we went around and round for 2 hours until they finally gave me the Neulesta shot "this time" but need to figure out by next treatment June 3rd... blah blah
So for days I am on with insurance, Onc Center etc etc ... I go to my follow up on May 22nd, bloodwork all good WBC 17 ... THEN Dr drops, we are going to change your treatment regimen because its cheaper... I AM LIKE WTF !! I said No, he then said I can't treat you because the neulesta was denied ... WHO CARES if 1st insurance denied, I called Medicaid, they approved, I have Neulesta assistance, I have other small grand, Hell I can put it in a damn credit card ... they came back with half truths, never sent a medical necessity to my Insurance, never even sent in a claim all the while telling me they did a peer to peer review ... kept trying to push off this Biosimilar Udenyca, I asked many questions and they had no answers? How many BC patience here use it, have you looked real patient stories, it was just approved Nov 2018 is there anything from real BC people?
IT MAYBE FDA APPROVED BUT THERE WAS NEVER A TRIAL ON CANCER PATIENTS... are you kidding me ... I have searched on this website, and many others NOTHING for Pink Sisters stories, nothing.. I did find Nuelesta is a CHOICE, whereas they were telling me it's Mandatory ... jerks!
SO I left distraught told them to give me 24 hours and let me speak to an attorney ... How can a cancer center change a patients treatment plan "because it's cheaper", what about what is BEST for ME ...
Anywho, my Aetna insurance Nurse Manger filed a complaint with the Joint Commission and found me another Cancer Center BUT they can't get me in until June 17th ...
My appeal is on hold waiting a Medical Necessity letter.
So I have been researching more and it seems like I could be okay, skipping my June 3rd treatment, ppl stop and go all the time for low WBC etc ... but I am still a little scared, because after my second Lumpectomy May 1st the report said DCIS in ever slice of tissue..
Oh and on another group, someone posted about Chemo may not be Triple+ best choice of treatment, wait what? Waiting for the link now.
I am Triple+ and micromets in Sentinel Node...
Are all you Triple+ doing TCHP and Nuelesta?
Are there Natural alternatives to slow the Estrogen down?
I feel Dazzed and Confused...
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hi all..
Happyanyway- no, I was not off offered any other pain meds for horrible headache from last txt. I think that my np was going to check and get back to me after speaking to MO. She did tell me Claritin is ok to take. Do you remove the onpro patch immediately after it has stopped clicking? I never thought about taking it off in the shower. It is a bitch to get off. My hubby tore it off my arm and it HURT.
Mountainmia- sounds like you are holding your own so far. Nice that you were able to get in a walk. I am not in a real life support group either, although there are many in my area. I tend to be a "stay in the background" kind of person. Most people in theses groups tend to take over and monopolize the conversation. I guess I just don't want to get into that. I have made calls to the American Cancer Society. They were nice, but mostly quoted out of medical books when I asked some specific questions. I think I knew more than their nurses, as I had already done the research but needed some clarification. I love our little group. We do support each other.
Kim- My gosh girl, I can't believe what your team is putting you through. I would definitely seek another opinion.I think that micro Mets in nodes would indicate the need for chemo. If Neulasta is being paid for by ins, why are they trying to push the other med???I am not triple positive, so not sure what protocol is in your situation. I also have some DCIS left, but additional surgery won't be until after chemo is over in July. I would not worry about the DCIS, you need to get a medical team that has their act together. I wish you luck.
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Kim - how awful that you are getting such a run around. I am triple positive on THCP but no Nuelasta (yet). MO is only going to give it to me if I absolutely need. First round I did not need. Second round she backed me off a little (75 percent) on chemo drugs to see if that would keep white count up enough to not need Nuelasta. She did that also hoping that I would have less SE’s (1st round was rough). I’m Day 6 right now and this round is better than last from SE point. Won’t know white count until I see NP next Friday.
You all are my support group also. I have a shrink too but only go to her occasionally when I really feel I need. I may try getting into Casting for Recovery this fall after primary treatment is done. It looks like a neat program.
Shaved the head rest of the way yesterday- hated it! Having a little fuzz made it better for some reason. Guess I’ll try some scarves today.
Confession: I’m eating junk. With lack of appetite I just try to eat something which leads me to comfort foods, carbs and junk. Fruit all tastes salty and salads or veggies don’t even sound good. But potato chips, hot dogs, sweets and ice cream - bring it on! Ugh! Wish I could shake it. Guess I need to push myself or go to protein drinks instead.
I’m encouraged that this round has gone so much smoother (fingers crossed - I’m only Day 6). It certainly helps my mental state. And the mental game is a big part of it all - isn’t it??
Wishing you all a good mental state on this Sunday
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Here's an interesting article in npr.org. It's about how those who have a purpose in life have lower mortality rates than those who are more aimless. Maybe it explains why people intent on doing bad seem to persist for a long time, just as those who do good.
From the article, about the lead researcher: "Before she started graduate school, Alimujiang worked as a volunteer in a breast cancer clinic and says she was struck by how the patients who could articulate how they found meaning in life seemed to do better."
Not sure I how I would define my "purpose," but life is meaningful to me and there are important aspects of it, my family, my friends, my activities. Those are all highlighted even more, with the risk of loss, with having cancer.
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Kimmh012, rant away! Dealing with insurance during critical treatment is beyond infuriating. Especially when (I feel) the insurance company dictates treatment over medical professionals. I'm triple negative and have no knowledge of triple positive. I'm sorry.
UpstateNYer, I hope they follow through with pain management. My nurses have me leave the Neulasta on for an additional hour. Don't know why, but I comply. I took it off yesterday with soap and water. I prefer the shower method! Lol
Alicesneed, I can relate to the shaved head and diet. Sometimes I feel like uncle Fester, sometimes I feel fierce. I had been on a diet prior to my diagnosis. I ate so well! Absolutely no sugar, bread or processed foods. Since treatment, I have not been very good. My RBC is a little low, so my nurse told me to eat more red meat. I eat it every other day now. Pb&j, please. The days that I'm not hungry at all, I drink Atkins shakes, the ones with 30 grams of protein. The chocolate is good. I just bought some vanilla, but haven't tried it yet. Once I get through chemo, I will get my diet back on track. I'm glad that this treatment has been smoother for you! That's great!
MountainMia, thank you for the information. I appreciate your research.
Be well, everyone.
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Things you can eat to add protein: meat, nuts, Greek yogurt, beans and lentils, eggs. You can add protein by adding some non-fat dry milk powder into shakes and smoothies, or anywhere else that it fits like creamed soups. Things I've seen recommend having some protein at every meal.
Here is some info from the site Chemocare, which is interesting and might be helpful.
They have a lot more resources available, too.
http://www.chemocare.com/chemotherapy/health-wellness/default.aspx
Husband Jim and I went for a slow walk this morning already. Went about 1 3/4 miles. I had to stop a number of times because I just get short of breath. I joke that walking me is like walking a dog, not an even pace to it. But I'm pleased I felt well enough to do that.
Kimm, yes, this sucks! As others have said, you shouldn't have to fight the insurance. I hope you can get good solutions to this and very soon!
Neulasta OnPro: I took mine off an hour after, per nurse's instructions. I had mine on my belly and it came off pretty easily.
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Hugs to you, MountainMia. Thank you for the alternate protein choices. Today is my down day, same as after my other two treatments. I would love to sleep all day and wake up tomorrow, knowing my third day isn't as bad. I hate to complain.
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