Starting Chemo December 2019
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Havingfaithtoday - sorry for not answering any time sooner. My cough is on and off. In the morning I don’t cough at all. But later on the day like in the evening I cough. Yes it’s like you want to take air and you can’t breath. I don’t know how to describe it.
Other than that I feel great. I’m at day 8 cycle 3.
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Oh Bejeweled! Glad you are done with AC-I have my last session on Monday and am def not looking forward to it as the side effects have been getting progressively worse! Hoping everyone is doing well and keeping you all in my thoughts and prayers! We got this🙏
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I had Cycle #3 yesterday....one more to go. Wohoo. Starting to see the light at the end of the tunnel, but now waiting for side effects to kick in. Neulasta should be going off in about 8 hours.
Chest weakness and dry cough is still persisting so my Dr referred me to a Pulmonologist who I'll see for a lung function test and another xray today. We have Pulmonary disease and heart disease in my immediate family so I appreciate that they are being extra careful with me. The Dr discussed the possible side effects from Taxtotere, Pulmonary Pneumonitis and Pulmonary Edema. All my other tests from last week were good (previous chest xray, blood work and ekg). But I'm glad she's being extra careful. Please send healing thoughts everything is ok.
Love and healing thoughts to all of you. Sounds like everyone is getting closer to being done. Yeah!!!!
We've GOT THIS ladies!!!!
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Hello ladies! Glad to see everyone progress well without major complications. I had my first DDtaxol on Monday with 3 more to go. I can officially say I will be done with chemo next month. Taxol is very different from AC so far. Day 2 and I am having body aches and bone pain. I feel as though I have the flu. I took some motrin, went for a walk and that helped with the aches and pain. The hot shower helped too. I am still cold capping with only a little shed during AC but not noticable to others. I have a second opinion about radiation setup for next week. I pray that everyone continues to do well without major side effects.
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Bejeweled, Thanks for the info. I'm annoyed that I now feel my care is not that organized and I'm a little neglected. It's hard to keep my mouth shut when something is bothering me. But as I am doing pretty well, I keep telling myself not to rock the boat too hard and accuse them of doing a bad job, as it will just make the next 3 treatments more stressful and miserable. If I have a reoccurance, hopefully not, I will reconsider going to Sloan. Do you go to Philly for treatment? A major cancer center? I work in Trenton, but haven't been there since September. I'm in Jackson. My mother went to Philly for lung cancer, as she grew up there.
Gearup: Glad the cold capping is working for you! I'm on CMF and lost 80% and I'm not done yet. It stinks, it was not totally expected. They told me "thinning".
Margo, havefaith, Eigna: Sorry about your coughs, hope you feel better!
Maryjv, Glad you are almost done with AC!
Hope everyone is doing OK and hanging in there! The more tired I get, the more I lay in bed and read the forums. I'm still off work thank goodness. I've been trying to do all the things in my house I put off for years.
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Oh no! My port is infected...red and itchy...doctor started antibiotic and will have to have it removed next Friday, not sure when it will be replaced but def not looking forward to chemo without it
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Oh no Mary, I am so sorry to hear that. You are almost at the halfway mark now so maybe you can manage with a pic-line.They are easy to place, maintain and use. They can also stay in for an extended peorid of time.
JRNJ I am so sorry your are feeling so discourage about your medical team. Perhapas a multidisciplinary meeting to discuss the issue. What about your nurse navigator...is she(he) being helpful?
Have, I hope your pulmonary issues resolves soon and you finish your chemo like a warrior.
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Mary I'm so sorry to hear this and hope that you're on the antibiotic, now, getting rid of any infection. Surgeon, that put in my port, said she could remove it in her office so you may avoid hospital though not sure if that varies by doctor. Love, light, and prayers that you will not be held up long by this bump in the road.
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Thank you Kat, I am looking at it as just that; a bump in the road...I am on an antibiotic and scheduled on Friday for removal at a hospital of course. Just don’t understand why we can’t replace the port at the same time as removal? Idk will probe more on Monday when I go for chemo 🙏❤️ Not looking forward to 13 more treatments (12 weekly taxol) without a port
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Hi Everyone, just checking in. Mary, so sorry to hear about your port. Hope they are able to resolve it quickly.
How's everyone feeling? I'm feeling a little down and could use some cheer up and encouragement. It's day 5 of cycle 3 and generally feeling yucky. I can definitely tell the cumulative effect of the treatments. I'm so much more tired.
I did see The Pulmonologist this week and had a lung function test. For the most part everything is ok, but my dlco was a little low, so they are going to keep an eye on that and retest after the next chemo cycle. I still have a cough and that chest weakness sensation. And I'm still dealing with intermittent heart racing. I can deal with most side effects, but when it comes to my heart and lungs, I'm having a harder time. I'm just hoping there isn't any long term damage that will be a result of the chemo.
Just hitting a little bit of wall and shed a few tears today over the whole chemo experience. Anyone else feeling this way? I want to be done and return to normal.
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Oh have faith today! I’m right there with you!!! Progressively worse each treatment and when I feel bad (days 1-8, fatigue, bone pain, hot flashes, reflux, no taste buds, out of body experience) I forget when I ever felt good! Sending you a big hug and hoping tomorrow is better than today🙏❤️0
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Mary I'm wondering if it is because of infection risk. They may want to wait until existing port is removed, antibiotics completed, and no sign of infection before putting in new port. Pretty sure they are not going to want you having 13 more treatments without a port. Do they use it only for chemo and/or blood draws as well?
I know it's easier said than done but try not to worry. Big Hugggs
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havefaithtoday I am feeling the same way. Completely over this. Something about that third cycle threw me over the "I can do this, no worries" feeling that has carried me through to this point. It's for various reasons including, but not limited to, each cycle is increasingly difficult, has more side effects, is scarier, more worrisome, feeling anxious and have to make a genuine effort not to be snappy. Just know you're in our thoughts, many of us are likely experiencing the same and it will be OK. xo
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Makes sense Kat, waiting to replace until infection is resolved! Hoping we all can make it through to the end of these very tough chemo treatments!!!
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Thank you ladies. I knew I could count on you all for some encouragement. I figured since we all started in Dec, we must all be hitting that same wall by about now. I know we've made SO much progress, and we've all been warriors, but we're not quite at the finish line, and at times it feels so far. But we will march on and finish strong one way or another.
Sending this healing mantra to you all:
'May everything that doesn't serve your body well be removed and may every cell in your body be restored and renewed. May a beautiful white light of healing circulate through you body to bring peace, wellness and wholeness '
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Maryjv - that is awful about the infection!! Did they say how that even happens? I am glad you are on antibiotics and getting the care you need.
Havefaithtoday - Hitting the wall... ugh... I definitely had that happen a couple weeks ago. I persisted and it did get better, although each treatment gets a little harder to show up for. This is so hard, but I know we can do it.
JRNJ - I totally understand about not wanting to create any issues that will make the next 3 treatments more stressful. At the same time, you definitely deserve the absolute best in care. Maybe you can create your own list of questions/reminders for each visit and basically just take matters into your own hands... list every side effect and symptom you are having and ask if there are any labs or imaging studies that need to be done to monitor these issues. I don't know - just a thought. I am getting my treatment through my local hospital, but they have an oncology affiliation with Penn Medicine in Philly, so the oncologist is a Penn Med doctor, but I can go to local locations.
Thinking of everyone - each week gets me, and all of us, closer to the goal line.
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bejeweled-the nurses I work with say this is due to poor port care during my chemo, feels like my body is rejecting the port and pushed it to the surface...I am not sure but def not looking forward to chemo tomorrow without the port!
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Maryjv- oh wow that’s awful!! Sayi. A prayer that chemo goes well without it! Let us knos
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Thank you! I am very thankful to the lord that I was able to have my last AC treatment today, they used the port (my doctor said I would not have been able to have the treatment through my vein) and I will have it removed on Friday! Feeling good with the steroid, cooked dinner for the first time in the last two weeks! Taking this one day at a time🙏❤️ Keeping you all warriors in my thoughts and prayer
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Congratulations Mary!! So glad it worked out with the port and you got your final treatment in. That must be a great feeling!!! You are a true warrior indeed!!!
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Mary, so glad you got your final treatment!!!
Havefaithtoday, kat, I feel I'm getting angrier as time goes on as I don't feel my family and friends don't really understand. My 14 yo son is laying in his yogibo yelling mom I'm hungry get me a tray and my daughter annoys me every 10 minutes. And my husband is a lazy couch potato
bejeweled thanks for the input. I am an ocd engineer and I find things, mistakes other people wouldn't and some, most drs don't like that.I found a mistake in my mri report and BS told me I was wrong. imaging confirmed the mistake and fixed it. Later I wanted to discuss nccn guidelines I downloaded and she went off the deep end. my new BS is great bashed my old one too and told me she respects an intelligent woman. Maybe we can have lunch someday how far south jersey?gear up. I don't have a nurse navigator. Met her once and never saw her again. Her job was to give me therapy pamphlets nothing else. She was in my BS team who I hated and have a new BS. So my “team" is fractured but for the better. I can't form a new team unless I dump all my drs. New BS is awesome but too late. Although apparently my mastectomy left excess tissue so she may join my PS during reconstruction. My reconstruction adds a whole new level of complexity regarding drs surgical infection horrible hospital ....another story on another thread.....
Me, had treatment yesterday. Very frustrated with inadequate medical care. I realize I'm pretty healthy and grateful for that. Liver enzymes a little high. I asked head nurse not my nurse why they weren't being tested every treatment and she said they would be now. I realized today they are sending it to the drs own out of network lab Instead of my required lab which Is why obnoxious nurse said insurance didn't cover it. Regarding Neulasta it turned into a major big deal just to get someone to give me options. They told me there is no such thing as reduced dose,Charlie I wish I had my own syringe. They would not tell me about NEUPOGEN until I asked. They said switching plans is a fight With insurance. I am skipping it this week and they will test me next week. I am calling insurance today I don't believe them. Third issue. Why don't I see a dr or assistant before each treatment? Because they are doing chemo in office and can't bill 2 visits in office. Why have my past visits been in same day? They are probably eating cost. All wonderful answers.My obnoxious nurse made me cry today. 😢 I'm stuck with her 2 more treatments. I knew if I asked too many questions it would end like this and now I’m labeled a problem patient.But I can't keep it in when I see problems.0 -
Hi everyone! I was offline for a while as I got the flu between rounds 2 and 3....hope everyone is ok. I'm definitely feeling more tired with the cumulation of treatments.
Mary: seems we are on roughly the same schedule. I just finished my last AC and starting weekly taxol tomorrow. I hope your last treatment went well. My 4th treatment was easier than the middle two but my red blood cells are going down and I sure feel it! I'm trying to eat iron rich foods like chicken liver (highest concentration), blood sausages, etc. Has anyone here been able to stabilize RBC with dietary changes?
As for taxol, Mary and those on taxol, were you offered a choice? I was given a choice between 4 heavy taxol every 2 weeks (like the AC) or 12 weekly at 1/3 of the dose. I chose the latter hoping it would make the side effects more manageable - easier with a young family- although it ads a month to my treatment, and steroids every week...
Let me know how it's working for you!
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Marmothka - just to answer your question about stabilizing the RBCs with diet... My oncologist wanted to do some additional testing and ran blood work for Iron, Ferritin, B12, and something else. Those all came back normal, so she said that it means that the anemia is being caused by the chemo only and that there isn't really anything I can do (other than transfusion if it gets that low). I don't know if that is a standard treatment process or what, but it didn't sound like dietary changes would help me because they would impact things that were normal anyway.
MaryJV - congrats on last AC! What a great milestone. Glad you could use that port one more time and that things went well.
JRNJ - I am speechless. I am so sorry for all of the issues and problems. On the one hand, I am so glad you have a better BS who is more respectful of you as an intelligent person. Details are important. You would like my MO. She is very much like you and your new BS. She spotted a typo on the pathology report that could confuse someone else later. She apologized, but said she couldn't let it go... called the lab director right in front of me (told him he was on speaker and the patient was also an interested party to the conversation) and explained the issue and said she needed it corrected by the end of the day. :-)
But on the other hand, I just don't understand what you are being told related to the infusions. I have had no real issues with insurance approvals, etc. (And I have an Aetna HMO product, so it's not like it's some kind of fancy insurance). I have my physician visit and chemo always on the same day. I am glad you were able to advocate enough to get the labs done each time, but I am not sure why the Neulasta/Neupogen was a big deal. I am so glad you only have 2 left. I have 10 left, then a year of Herceptin, and I think if I were dealing with those issues, I would just lose it.
Stay strong and focused - hopefully radiation will be a better experience. Sure- let me know if you want to try lunch at some point. I am working, but right now I am mostly working Monday and Tuesday, chemo on Wednesday, then recovering Thurs-Fri, but have been feeling much better now that AC is over, so Thurs and Fri are doable. I am down near the Voorhees, Marlton area, if that helps for a frame of reference.
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Happy Valentine's Day to all you lovely ladies!
I have a quick question, has anyone else dealt with all over itchy skin? If so, did anything help? It's day 11 post chemo and it started yesterday. Wondering if a Claritin would help or if I need Benadryl.
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have faith today, sorry to hear of itchiness! I would try both, for the neulasta shot I was taking Claritin in the morning and Benadryl at night! Hope you get some releif
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Thanks Mary. I just heard back from Dr and they said it's ok to take Benadryl so I just took a half to try. In the past I used to take it here and there for sleeping especially when I'd be traveling. But then there were so many reports of it being linked to alzheimers, etc, so I stopped. But I am thinking maybe it would be helpful during all this for sleeping.
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for sure! Helps me with the steroids!
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ladies! Wondering if any of you suffer from crusty eyes and red/burning, goes away during the day but everytime I sleep or nap bam!...anything you have found that helps??? Thanks in advance!
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Mary, I haven't but I have had dry and/or burning eyes. I use the artificial tears. I like the preservative free kind in individual tubes and toss them after each use. Also, maybe a warm washcloth compress might help. Hope it feels better.
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Hi Maryjv - I've noticed that I have dry eyes especially when I put eye makeup. I thought of putting artificial tears but I haven't tried it yet.
Going Tuesday for my last chemo. Can't wait to finish with this! Keep you posted
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