Starting Chemo June 2017
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How kind you are HapB! Have been reading about your Port issues and I am so sorry! I know that I am thankful to have my port even though the thought of something foreign in my body bothers me. But having all those sticks or a PICC line, which would be more labor intensive due to the length of my treatment, makes having the port a blessing. I hope you get that straightened out!
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Hello everyone! I just thought I would come over here to this board and ease some of your minds. I started chemotherapy in February and have my last treatment next week!!! I was on the AC chemo for four cycles every two weeks, and then 12 weekly Taxol treatments. I did pretty much OK the whole time. My life went on as normal. The biggest thing I noticed is I was tired, but that's to be expected. Just taking a nap, even a half hour when I felt that way solved that problem. And if I couldn't get a nap, I just went to bed earlier. I never got any mouth sores, rinsed with Biotene mouthwash constantly, and also used to their toothpaste. Also, I know this is TMI, but just eat a high fiber diet for constipation esp if you have to go through the AC portion. I ate the fiber one bars, the fiber cereal, and drank lots of water. I also drink hot water with apple cider vinegar and lemon every morning when I wake up to help filter my kidneys. I know everyone is individual, but my best advice is to take the meds they give you like clockwork, and come home from chemo and go straight to bed for that day if you can. I was diagnosed at 34 years old, just had a birthday last week so I'm now 35, plus I have a six-year-old and a three-year-old. I was terrified for them to see me hair free, as I've always had longer curly hair, but I'm here to tell you, everything involving this whole process was not as bad as I thought. Of course, I've had better days, but just keeping a positive mental attitude and doing what the doctor says will get you through and you will soon look back on this experience. Believe it or not, I didn't even have to wear a wig to chemo today, as I've gotten a pretty decent amount of hair back, and I have not even finished chemo yet! Of course, you will not be the same person you were when you started. I am so much better now at just living every day life. I am praying for each and every one of you, and just know we all understand what you're going through. You are not alone, and you are a true, true warrior! Just wanted to motivate you ladies and tell you, you will get through all of this! i'm not saying some moments won't be tough, but you will get through and at timesyou'll surprise yourself at how strong you are. I know I have! Bless each and everyone of you.
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Hi HapB! Thank you for your kind words! As far as hair loss during Taxol, my doctor told me she could almost guarantee I would lose all of my hair on the AC chemo, but that I might see hair return during Taxol and that is exactly what happened. I started noticing peach fuzz on my head a little over a month in, and now as I'm finishing, my head is fully covered with hair. Of course, it is thinner and very short, but it's hair and I'll take it!
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Good morning.... Can't sleep 🙁.... I start my THCP in about 10 hours.
Feeling OK... scared about allergic reaction.. but it is what it is.
Had my port put in on Thursday... All went well... Sore but good.
Will let everyone know how it goes
Hugs from TN
Denise
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sana18, my prospective regimen sounds pretty similar to yours, and I'm scheduled to start my AC the week of June 26th (barring no crazy surprises from the biopsy on my back next Tuesday). Thanks for checking in to show us what to expect!
Hope everyone's journey is easier than they expect...
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Sana, Thank you for this WONDERFUL report of how well you have tackled this treatment. I start A&C today with Taxol after. So, I am ready to go! I walked 2.2 miles with my neighbor and just feel ready to get the show on the road, so to speak. Your advice and experience are helpful to remind us to follow medical instructions, eat right, get plenty of rest and STAY POSITIVE! WOOT for hair already returning, too! My hair typically grows wildly fast, even though it's shorter in style, so I hope I can see a buzzed look around Taxol. If not, I will have hats.
HapB, I am sorry that darn port is still giving you so much trouble. Mine is only itchy at this point, so I used some oatmeal body wash this morning. Don't want to use lotion on it. Please keep us updated. Stay strong. You are NOT alone!
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Upheld, Good to hear from you! Sorry about your long, beautiful hair. I am sure it is an emotional process. We have to somehow make the best of it. I plan on keeping a journal, too.
Denise, We can do this! I am starting today, too!0 -
Hi Everyone! I am still waiting on a chemo start date, right now I am scheduled for 6/27, but am still having wound healing issues from my revision surgery. I saw a wound specialist yesterday, even though my PS said I didn't need to. He found a "tunnel" that I can only assume my PS didn't know about since he has done nothing to treat it. I am now packing the "tunnel" with Silver AG and bandages. He was not comfortable giving me a timeline for healing. I am worried as my MO had started mentioning the "Optimal window" for starting chemo and we are nearing the end of it. I am trying really hard to stay hopeful and positive that they will find a way to heal these wounds, but I just want to move forward, so I can put this all behind me.
HapB, I too am still having a lot of discomfort with my port. They put it in almost a month ago, and there are times when I want to scream, and I'm not even using it yet! I hope yours starts to feel better soon.
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so hap it wasn't painful?
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Just checking in..had my second dose today of AC and it was much smoother then my first. Had a blood draw through the port and everything. Now I am home just a little tired but still functional. My Mom went with me this time which was nice. We laughed a lot and she drove me home. Hey were surprised my hair was still good but I'm sure it will start falling out soon because when I pull a strand it just comes right out. One day at a time and I can mark another treatment off..
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KimPossible, the current plan is not to remove any more nodes. Originally, they thought the tumor was smaller, about 2.5, and my surgeon took my case to the "tumor board" originally suggesting a full axial dissection (am I spelling that right?) in other words taking them all out. But the board recommended not doing that because of then getting lymphedema. So they didn't take the nodes out, but then found during surgery that the tumor was much larger than originally thought. Testing showed micrometastases but a low oncotype (14). I think if they had realized the size originally, I might have had chemo or radiation in advance, but instead I had the surgery first and am starting DD AC (4) and Taxol (12) next week with radiation to follow.
Eschofi, my doctor prescribed Letrazole (lowers estrogen production in postmenopausal women) because of the similar delays I had getting started with chemo. I'm not sure of your age/other factors so that might not be suitable for you, but you might ask if there's something you could be taking to help tide you over and extend that optimal window.
Sana18, thank you so much for your reassuring report! It is great to hear that you have done so well. As it's sometimes hard to maintain optimism, hearing about good experiences is really helpful.
Along those lines, I had my port placed this morning and it went very well -- totally uneventful. The area is a little achy/sore, mainly when I turn my head, but I would equate it to a muscle strain, nothing major at all. I've been icing it on and off every 15 minutes since we got home about 11 AM (it's now about 5 PM) and took some Tylenol, but don't expect to need anything more. I can see the tubing running up across my collarbone and about 2 inches up my neck, but it doesn't really seem that noticeable and so far there's virtually no bruising. We'll see how it looks and feels tomorrow. . . but so far, so good.
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HapB, I'm so sorry to hear that. Thinking of you!
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Finished first treatment today three hours ago. So far the only side effect has been a massive sinus headache and a bit of dissiness. But Tylenol seems to have taken the edge off the headache. No nausea yet. Feeling a wee bit tired but otherwise good. Eyes are dry and sore but put some Systane in them to keep them lubricated. Not sure if drinking three litres of water made a difference. Taste is okay, a bit off but tolerable. I had an excel mint and a Worthers candy during treatment which seems to help.
One down, five more to go. I think I can...I think I can...I know can! You can too ladies.
Will chime in again tomorrow to let you know how it's going.
HapB, some people just don't think before they speak. A lot of people need to be educated about cancer and the treatment. My oncologist said even if I didn't have it in my lymph nodes I would still be given four treatments. Perhaps you could let her know in a gentle way that what she said was very hurtful.
Hugs for everyone.
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long day but went well with my 1st round TCHP ..
Was there 9 hours. Now pill up sleepy.
port worked well.. Staff was wonderful so was hubby and son. They helped a lot with iceing down my fingers and toes.....
Hugs from TN
Denise
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Oh Happy I'm sorry!
hugs from TN,
Denise
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Sana Thank you for encouraging words!! I start next Friday and I'm not looking forward to it but now it seems less scary.
HapB So sorry to hear about your port, get some rest!
KimPossible ok I have waited all day to hear about your day......give me the scoop!
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Hi all, I've followed some of this thread and noticed some people questioning chemo. Here is my view, keeping in mind I am no medical expert!! I personally believe that in most cases, you throw the book at your cancer. Particularly if you are triple negative or Her2. Triple negative has zero targeted therapies after radiation. Cancer does not just spread through the nodes; it also moves through the bloodstream. Chemo is vital for systemic treatment. Yes, it's absolutely toxic, but...ummm....cancer is no prancing pony either. It gets stronger and more resistant the more time it has to evolve I personally want to throw everything at it. There is a thread in the stage 4 forum asking people to speak up about their initial diagnosis. I saw SEVERAL instances of those who initially had DCIS or stage 1. They had their lumpectomies and radiation and then later went to stage 4. No chemo. This means cells broke away even though it didn't "seem that way". Treatment decisions come down to risk versus benefit. Just care about you doing all you can right out of the gate!
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HapB - I'm so sorry to hear about the set-back today. Get some rest and be well.
Pink - How fast did they infuse the cytoxan? Was it a 30 minute infusion or 1 hour? My MO said that one SE of Cytoxan is sinus headaches if it's done too fast with some people. They have to give mine in over an hour for that reason. The nurse slowed it down almost as slow as she could do it because I get this ring of pain right around my hairline near the end of the hour infusion. It makes for a long chemo day, but it's better than the headache
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PoseyGirl Your post was perfect timing for me. I start chemo on June 23rd. A friend gave me a book "Cancer: 50 Essential Things To Do", i read the entire book last night. The author is anti chemo and believes less is more when it comes to treatment. I started questioning why I was about to do this to myself. I'm stage 1 and had lumpectomy and my nodes were clear. I thought radiation would be enough and even began questioning if that was needed. Your explanation of why I need to throw everything I have available at it was like a light opening my eyes. I did not know that as a triple negative it could spread through my bloodstream. Theres so much i dont know and when I learn it's usually because it's happening to me. Thank you for posting on this thread I believe God sent you here to talk to me!!
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Hapb I'm so sorry things did not go as planned. I hope the doctors can get it sorted out so you can continue with treatment.
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Hapb I'm so sorry things did not go as planned. I hope the doctors can get it sorted out so you can continue with treatment.
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HapB, That is so disappointing, and I am sorry. Please keep us posted.
Wordlady, I hope when chemo is done they may reconvene and say no more surgery is needed. I feel like I am healing really well from that. I don't want it messed with again. BS told me the risk is 30% for going back in. Those aren't super low odds I am comfortable with. A friend has weekly lymphatic massage to stave it off, and so far she has.
Denise, Wow, that was a long day, but you seemed to be doing well! Way to go and for all that good help!
Susie and everyone, I did it. It was not bad during the infusion session. Not bad at all, really. The Adriamycin (A) is only like a 5-minute push. My nurse just literally pushed it directly into the port. I had two big shots worth. She said my port was healing so nicely, and all they look for when flushing and blood to return (not medical here) looked just perfect. The Cytoxan did take 30 mins from the drip bag. I only felt tingly once on my head during that (those hair follicles saying we're out of here in a few weeks), and I felt it with the premeds when they were giving me a steroid. So obviously, I have a sensitive scalp.
On the ride home (35 mins), I was starting to feel a bit tired. My DH drove me, of course. Once I got home, I just wanted to take a 30-minute nap, which I did. He had prepared a wonderful dinner. I ate a modest portion, as not to upset the apple cart, so to speak. We watched Zooptopia, which came by mail, and I can totally indentify with the sloths at the DMV. Ha! (Cute movie but not for wee ones). As I sat on the couch watching, I was fighting sleep but I got through. Took all meds and got in the bed at 8:30, out by 9:30. So, the tiredness hit me hard day one. I also had a light headache, but nothing worth taking Tylenol for (enough in my body), and 3 very short stomach pangs like uh-oh, but they were very short lived. Whew!
Today I was slow to rise at 6am, but I just had some toast, not even fruit appeals to me this morning. Maybe some applesauce will taste good. I have water constantly by my side.
I have defecated normally twice this morning, and I did take 1 Senna tablet last night, so I am pleased with that. It was suggested to me to eat smaller meals throughout the day. When I woke at 2:30, I came into the kitchen and had 2 peanut butter crackers. I thought I don't want emptiness to turn into nausea.
So not knowing what to expect, while I don't like feeling this tired, I am sure it could be much worse. I will rest as much as possible for sure, but if I can walk around the block later, I will do that, too.
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asking a really dumb question here.. I know that RNs and MD's have told me the answer.. but i'm fuzzy right now..
I just had my 1st round of chemo yesterday ... now from what I've learned so far the first 7 to 10 days after any chemo is when your white blood cells are at their lowest..
So extra precaution needs to be taken to make sure you don't catch anything ... but during that time can I go for walks ? Not to crowded places, and if I feel like I'm up to it.. ??
Or should I stay in and do yoga and stay way from folks..
I'm not working now... so I don't have to worry about that...
Thanks for any adviceHugs from TN.
Denise0 -
I think it's more like days 7-10. I've been working week one
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KimPossible, so glad your first day went well...I hope mine goes as well on Wednesday! Keep us updated on how you are feeling this week.
Denise, thanks for asking that question, I had the same one.
Chemo veterans, here's a question. I know about doing the lidocaine cream over the port area 1 hour before infusion. But I have to go the day before to get a blood draw and I'm wondering, do I do the lidocaine cream for that as well? Now that I have a port they are going to use that for blood draws too, right? I'll call on Monday if I need to but thought some of you would likely know.
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Denise - It's days 7-10 that the counts are at their lowest. That's when it's best to avoid activities that might make us suceptible to illness. Walks are fine and, from what I understand, highly encouraged. I've been working full time and I'm a high school teacher. The Thursday and Friday of the first week of the rounds are my days 7-8. I just tell kids they can't get near me if they have any kind of sniffles or illness. So far I'm 2 rounds in and have been very healthy
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Day 2: Still feeling pretty good today but lots of heartburn and hiccups from the Emend. I sure hope next are similar. Trying to drink lots of water to help flush out the drugs. One litre done one more to go. Taste buds so far are still okay.
Did my 40 minutes on the treadmill but not as intensive as usual.
MsLin thanks for the heads up. I'll check next time with the nurse. Infusion took about half an hour but I did mention the headache which she said would go away right after treatment. I'm also thinking it could be a side effect of the Dexamethasone or the Ondansetron because the headache was back again shortly after the dosages. I've had cluster headaches in the past which come and go. They also make me a bit dizzy.
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Hi Susie and Hapb,
When I wrote my post, I realized it was a bit assertive in sharing my UNPROFESSIONAL opinion. But I really did want to share because while overtrearment is something that the medical profession wants to avoid for us, undertreatment is a scary thought to me personally. Cancer comes back stronger the next time when it recurs. Odds are very low that stages 0 and 1 would ever recur, but you don't want to be one of that 5 percent is my thinking? obviously any decision you make must work for your particular situation, beliefs, breast cancer type and medical team opinion. I just think we need to have all our facts about risks...oh, -and to clarify - cancer can spread through the blood for a any type of breast cancer. And i am surprised to know that forgoing chemotherapy for triple negative bc , even if at an early stage, is suggested? Triple negative responds well to chemo; it's one of the most important weapons a patient has, I believe
So certainly don't take my opinion for more than its worth... I am strong on this opinion, but you don't see the letters MD after my name lol.
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I've had a very similar course-initial surgery was 4/10 and needed revision on the left on 5/8. It delayed chemo a bit, and we ended up waiting an additional 2 weeks until 6/6 as I was leading a student trip to D.C.from 6/1-6/5. My oncologist said not to worry as long as we were within 90 days of the initial surgery. Looking back after having that first round it was a blessing I didn't try that trip after round 1! Hope you are healing well now.
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Wordlady-I would use the Emla cream for all times they are accessing the port! It's solely for decreasing discomfort, and the needle is the same every time they access. So numb away!
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