Chemo starting March 2019
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Hi ladies!
Quick update. Feeling a lot better today. I'm still in hospital but neutrocyte and inflamation numbers are starting to move in the right direction after a few days of stubbornly not moving, and my temperature is back in the normal range. I've been having morning and evening antibiotic drips and daily blood booster injections. I also was given some mouthwash which has really helped restore some of my taste buds and help with the oral thrush and reflux. It's been so terrible for weeks now and it was really getting me down as everything tasted like cardboard or just really really wrong, and the little I could eat was burning my throat. Since yesterday I could taste the hospital food for the first time in ages with no horrible burning and stomach bloating!!! You have no idea how relieved I am. Fingers crossed it'll stay like this for a while.
If things continue I may be released back into the wild on Monday. My next problem is my veins. My 'good' arm has no viable veins that aren't scorched or shrunken at the moment so not sure what's going to happen for the next scheduled chemo on the 17th (if it isn't delayed). Hopefully they'll agree on a port once I'm better even if I only have 3 more infusions to go.
Hope everyone else is doing ok. Big hugs to you all!
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Pokyspider, that's great to hear that you're improving! The whole tastebud thing is VERY frustrating for sure and good to hear you can eat without the burning, that's wonderful! I pray that you'll continue to improve & get back home soon.
Hugs to you!
Angie
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Thanks Angie!
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Pokyspider, so happy to hear you are improving. Here's to continued upward swing for you. Hugs🤗
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Good news! Discharged this morning after a week in hospital and I'm back home at last. Next chemo (docetaxel #2) has been postponed for 3 weeks or until I've recovered enough, and I just have to go back for weekly blood tests to keep track on progress. They will also be giving me a neulasta injection after each of my remaining 3 chemos.
I spoke to my doctor about the trouble getting ivs in and how I'm very anxious about it. He's agreed that we'll have to consider a port if my arm hasn't improved in the next couple of weeks. Not sure if it's done under local or general anesthetic (?) but I guess I'll find out more about the procedure if I need it.
Mouth is still a bit white and gloopy but mouthwash is keeping it under control. My fingernails seem to be getting worse though and I can see the top thirds are starting to separate from the nail beds and discolor. Not too painful at the moment though.
Looking forward to sleeping in my own bed tonight!
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Poky: Glad you are home and get a bit of a break! Take Claritin with the Neulasta shot. A few days before and a week after. It does minimize the bone pain. The shot is great for keeping the white count up. But it has its own SEs.
They put me out for the port installation. Using twilight- like you get for a colonoscopy. Takes around 45 minutes I think. I don’t think they could put it in with a local. But I know they remove it with a local.
I hope the next 3 weeks see some improvement with those darn SEs.
Jean
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Thanks for the well wishes! Feeling a lot better after a good nights sleep in my own bed.
I was getting the neulasta shot 2 days after my FEC infusions. Didn’t have one with this first Docetaxel so that’s probably what sent me into a tailspin. Doc said they will be giving it for the remaining 3 Docetaxels. I’ll see if I can find claritin here. I’ve never seen it in the pharmacy but maybe it’s sold under a different name. I remember after the first neuslata having terrible pains in my legs, pelvis and spine. They gave me pain killers that took the edge off a bit but I could hardly walk for a few days and sitting down was torture. Since then the bone pain hasn’t been too bad. I think the FEC100 chemo was very strong and my body never really recovered enough after the liver damage. With the new Docetaxel I just couldn’t cope.
Anyway, looking forward to 3 weeks of recovery and then back to business!
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update after last chemo treatment May 29th. I was scheduled for surgery (Lumpectomy with some nodes ) but all heck broke loose right after my last chemo. All of a sudden I felt awful, fatigue and brain fog to where I could hardly think. Went and got checked and find out I went super anemic and after a CT scan of my chest I had a blood clot! So off I went to get two iron infusions and put on blood thinner and an estrogen blocker pill, as my surgery had to be postposted for three months! I was devastated and just sat and cried in the oncologist office. I have improved, no longer anemic, but now have a UTI ! What next I am wondering? I sailed thru the chemo months with only a few SE, but now that it's over, I seem to be a mess. And terribly worried about having to wait three months to remove the cancer. I was assured the estrogen blocker pill would keep the cancer that's left after chemo under control, but....
Anyhoo thanks for listening. And to everyone in this battle I pray you get through it all, put it behind you, and have wonderful futures ahead of you. I know I am looking forward to getting "me" back again!
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GratefulGrandma— I’m so sorry about the delay in surgery! I had side effects all through chemo and it seems to be the gift that keeps on giving as chemo brain did not really interfere until after chemo stopped and now I’m having an outbreak of hives which I haven’t had to deal with for nearly 10 years! I have chronic hives but nothing more than a small area breakout for a day in over 10 years... today is day 4... and several areas covered and itchy
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2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me
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mncteach I had terrible hives half way through chemo. I went to an allergist and he gave me a cocktail of things to take and it really helped. Pm me if you want me to send it to you. He thinks it was my immune system giving me the middle finger.
Ucfknights. I am having my second surgery the same day as your Moms BMX. I hope it goes smoothly. They can prescribe a Valium for her for the MRI if she gets anxious. It is an uncomfortable position to be in for an hour. You just have to go to your happy place in your brain. Definitely get the ear plugs. That machine is loud.
Gratefulgrandma. So sorry for all the post chemo SEs. I hope you are on the mend soon.
Poky. How is it going? Feeling better? Enjoying your 3 week break?
I am feeling pretty good. Leaving for a cruise tomorrow. Hoping for some relaxation!
Everyone have a good week.
Jean
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jean-my acquaintance has the same type cancer as you a tiny 0.5cm tumour , no lymph node involvement like you and therefore she is not getting any chemo. Why you are getting chem0
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usfknights-wishing the best results for your mom. But if she did not have surgery yet how, as I see in her history. Shehas 1 lymph node involvment? It was seen by ultrasound ?
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Margun. I have a high oncatype. So this is my insurance policy. I had a 20% chance of it returning somewhere in my body. The chemo brings that down to 6%.
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falls church- i thought that. Oncatype is determined by tumour size, type and node involvment. But I guess I am mistaken. This is interesting because all you have as info on your case is exactly the same as my acquaintance and she is getting surgery and radiation only
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Went for my blood test on Wednesday and doc was very happy as levels were looking a lot better, and I felt good. He decided that I had recovered enough to go ahead with an 80% dose. Bit gutted at first because I thought I was getting an extra 2 or 3 week break but after thinking about it I was happy it went ahead - don’t want any more delays really. It kinda worked out well as I didn’t have time to work up any anxiety about the infusion!😅
Nurse did an awesome job and found a vein first time (a first in itself!), and so far feeling ok. Bit achey today but nothing unmanageable. With only 2 more to go I hopefully can avoid a port as long as my battered arm can keep going.
Unfortunately the oral thrush that I got just after the last infusion appeared to have migrated south! (Great 🙄). Extremely itchy, burning and dry so I was referred over to the hospital gyno section immediately and am feeling much more comfortable. Have to go back just before next infusion for a follow-up.
Weather here is ridiculously hot and humid with rainy season at the moment, so I’m just staying in the air conditioning as much as possible. Managed a trip over to Costco for some supplies so all sorted 😊. Fingers crossed no more neutropenia but I have an overnight bag packed this time just in case
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Oncotype testing:
https://www.breastcancer.org/symptoms/testing/types/oncotype_dx
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Chemo #7 went well on Wednesday. Can't believe I only have one more to go on Aug 28th and then on to radiation. A huge sebaceous cyst the size of a golf ball popped up on my chest 2 weeks ago just below my collar bone and got infected, so I've been in having the dermatology department at the hospital monitor it. Nothing sinister - doc sent me for a chest ultrasound just to make sure - just put me on antibiotics and it's looking and feeling a lot better now. Trying to get out and walk when it's a bit cooler in the mornings and after the sun goes down. It's 38c (100.4f) with high humidity so feels like 44c (111.2f) here most days, and coupled with hot flashes from chemo induced menopause I'm one hot steaming mama! 😅
Radiotherapy for 6 weeks to follow but I haven't had any official information about scheduling or what it involves yet. Guess my doc will discuss that at my last chemo session. I'm very fair skinned so feeling a little anxious about getting deep fried. 🔥
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Although it looks like you're all done with chemo and have moved on, I just wanted to share that I had my last infusion on Wednesday. I'm done! 6 weeks of radiation for me next scheduled from September 16th and then hormone therapy. Hope you're all doing well. Can't believe I'm finally done (fingers crossed). Whoop whoop!
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hey, Poky. That is awesome! I am so proud of you for toughing it out for the worst run of chemo ever! I know you are thrilled. I didn’t have radiation, but my takeaway from this forum is to use lots of lotion. So get out there and moisturize!
I had my tissue expanders out and the implants put in last Monday. My PS also took out my port. What a blessing to have that nasty thing out of my chest. Don’t get me wrong, I loved it during chemo, but was always aware of it sitting there. I went for another stomach shot yesterday and they drew blood. Had to find a vein like the rest of the world. 😎
I unfortunately developed a hemotoma in my noncancer breast and had to go this Thursday to be put under again ( second time in 10 days) to have it drained. It was from the surgery the week before, but from the little bit of lipo he had done on the left side. I haven’t looked under the dressing yet- no shower until tomorrow- but I hope it looks better. My MIL said I wasn’t black and blue, I was black and black.
My hair seems to be taking a break from growing. It is still filling in, but I only have about a 1/2 inch all over my head. I can still see scalp where it is a bit thin in places,but I think it just looks like a super short haircut now, not chemo hair. No curl yet, but it will, I think when it gets longer. It is very salt and pepper. My husband is calling me the silver fox. Not so sure about the foxy part. 😛
Love to you all and I hope everyone is well. I am pretty excited to not have to wish anyone a week free of SEs. Hopefully we are all past them!
Jean
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Poky
Congratulations for being done with chemo! Good for you! I don’t know if I'm doing radiation or not, docs are still deciding, but I assume I’m there next too. Let’s get this mess done
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congrats to all on being done this huge part, poky you made it!! Jean I’m right behind you, no radiation and scheduled to swap out my expanders and have my port removed 9/13... lucky Friday the 13th 🙄. Keep on feeling good everyone
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Congratulations Poky! I agree that you did have a rough time with chemo. So glad it’s over for you!!!
I had my 2nd round (out of 14) of Kadcyla yesterday. It seems to be pretty well-tolerated, yay! Also thankful that it only takes 30 minutes to infuse. I also got started on Anastrozole yesterday. Anyone here have any issues with it? I know we’re all different, but would just like to see if there’s any common side effects.
I’m recovering well from my right sided mastectomy w/DIEP reconstruction, planning to return to work in a few weeks. I tried walking on the treadmill just over a week ago and developed redness and warmth below my left hip incision which finally resolved with antibiotics from my PS. It’s always something!!
Praying for everyone here for speedy & complete recoveries from all that our bodies have had to endure and also for emotional well-being. This journey is challenging and we all know it affects our mind as well as our body. Thank you to all for sharing your story and helping to support each other. This forum is hugely beneficial.
Love to all,
Angie
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Adhoney- how long after surgery you felt tiredness and wanting lying down often. I am 3 week post bmx but still feel tired. Nurse told me that my hemogylevel were slightly lower than before surgery.( after finishing chemo Ac and taxol.). Even thigh my lymph nodes are believed negative this worries me. That explanes my anusysl Fatih these few days
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Margun:
I was pretty wiped out after surgery for a few weeks. I had to get a unit of blood during my hospital stay after surgery & I was also on iron by mouth twice a day for 2 weeks after surgery. My hemoglobin & hematocrit levels dropped quite a bit after surgery as well, but were slightly improved 2 weeks post-op.My energy level got better slowly, probably around 3 weeks post-op.
How many weeks after your last chemo was your surgery? It’s a lot on your body having to endure all that chemo & then a major surgery. Give your body time to rest & heal. I’m sure you’ll turn the corner very soon.
Angie
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Adhoney, any side effects on Kadcyla? I've read of fatigue but not much else. I'm hoping they'll be a thread dedicated to Kadcyla now that it's approved for early stage BC. I start Kadcyla on Friday.
Thank you
Dawn
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Hi DawnS1962,
So far, I’ve noticed just a slight bit of fatigue a day or 2 after and also some random slight nausea. I had absolutely no nausea with the chemo so it feelsodd to get it now. It’s not enough to need any med for it which I’m so thankful for. Otherwise I’m feeling pretty good.
I see you’re about a month out from surgery. How are you feeling? I hope things are going well for you.
Angie
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Adhoney, I'm feeling good. I think the best I have since pre chemo. I'm not looking forward to fatigue again but if that's the only side effect I have I'll be thrilled. MO mentioned Kadcyla is like Taxol and can cause neuropathy. Do you ice during treatment? I iced my hands on Taxol but not my feet and I do have a little numbness in my toes.
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DawnS1962
I haven’t used ice during the infusions, but I’m considering it. I have some slight numbness in a couple of my toes and don’t want it to get any worse.
I’m returning to work in 2 weeks, which I’m kind of looking forward to and kind of not. I’ve enjoying taking these last weeks to recover from surgery and just rest and chill. I really needed this down time.
Angie
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