Starting Chemo in July 2017
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Jen, Proud and Dodgersgirl, I'm so sorry for all the spoiled and missed plans. I share your disappointment, I've canceled 3 trips and one was a bucket list item. It's the pits. I have one trip hanging out there for March, we'll see if it goes forward, depends on the timing of my hysterectomy after rads.
But this ends soon and I know we'll be out there and this all behind. And yes it will be all the more sweet. This time next year let's post our goings on and I can't wait to hear about all the places we go.
For me it's always about the beach or a cruise. Like you Jen, nothing suits me more than a lounge chair with my name on it and a drink with an umbrella, a great book and my family.
Jen, I remember you mentioning this trip and I'm so sorry it had to be cancelled, it sounded like a wonderful trip.
Dodgersgirl, you definitely have had the most difficult imaginable time and you've handled it all with such grace. I can't wait to hear that you two are in your way to the ocean.
Proud, Im so sorry retirement has been sidelined, we just retired too and had so many plans. Ugh, I feel like I'm just spinning my wheels waiting till we can get back at it.
So now what we do is start the planning for the post treatment trips. Funny this came up today because I thought this morning that I was gonna start this evening with the research. I'm a huge planning freak.
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Sunnyjay, WOOT!!! Today is a great day! Ring that bell and wake up the whole place!
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sunnyjay-- congrats on last chemo!!
If you start rads in October, join our rads group.
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Sunnyjay - so glad you reached to the end of the chemo tunnel, I still have 9 more taxol to do, 🙁🙁🙁😭 you gals will be on the normal life soon. I’m still behind 😓😓😓😓
DodgersGirl - I was going a trip to Japan before this BC roller coaster and I have to cancel the trip. We are hoping to do another trip next year but I wouldn’t able to do anymore Hot Spring with my lymph nodes out.
Spoke to my MO I can do flu shot, so will do that next week. Tomorrow is my taxol 4 infusion, wish me luck!
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Unfortunately my infusion center doesn't have a bell to ring. But I did get Congratulations all around! I got back tomorrow for my neulasta shot so I get to see my nurses one last time. Since my port needs to be flushed monthly this won't be my last visit to that place but at least it won't be for drugs next month! ☺ Since I am doing reconstruction I will keep the port in for future IVs. I have tiny, rolling veins so the port is a Godsend! Just getting my labs each time resulted in 2 pokes to find a vein.
Like all of you, I am waiting for an opportunity to travel. My husband wants to have a 2nd honeymoon since ours last year was only 5 days. We went to Maui so 2 of those days are basically traveling days. We were hoping to go somewhere this year then all these treatments came up. So then we planned to go at the end of the year... but he's on a kidney transplant list. We don't know how soon he'll be called but his doctors keep alluding to it being within the year, so we have to stay close by. (fingers crossed)
I thought it was funny that just a few hours after I left the infusion center I get a message from the RO wanting to schedule a follow up. I should be able to get a few weeks in between treatments, right? I haven't called yet to schedule. I'll probably wait until tomorrow.
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Paulette, good luck tomorrow!
Sunnyjay, yay!
As for me, a little better than yesterday, but taking a shower was a struggle, as well as walking the one flight of stairs in my house. I was able to do a little work from home. I can't believe my MO originally wrote a note to my work saying I could work full-time (I corrected him, but that could have caused me problems, if work had it on record that I was able to work full time, but wasn't).
I called the oncology nurse, because we are supposed to if "fatigue interferes with everyday activities". When I said I could barely get out of bed, she said that was normal. Don't know why I am supposed to call, then. I'm definitely having cumulative issues.
On the bright side, I ate oatmeal and split pea soup today, with no ill-effects so far. It's the little things, right?
I'm sorry people missed pre-planned trips. How disappointing. My husband wanted me to start thinking about what I want to do when I'm "all better", and while it's sweet, I just got overwhelmed thinking about how long it might be, and how I will be expected to be "all better."
Definitely not taking enough happy pills,
Leatherette
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Leatherette, we are on a similar regimen except my C is Cytoxan. Were you going every 3 weeks? My day 5 is usually my worst with bone pain from the Neulasta shot. I'm anticipating a tougher time with this being my last chemo and the cumulative side effects all around. Ugh!
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dodgersgirl... the ocean is calling....
Congrats sunnyjay!! Happy to hear you're done... and hoping the next week is more tolerable than you're anticipating.
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LoJo100: I wish I could say that the swelling was caused by the hives. But they were just aggravated I think. I got fitted for a compression sleeve when I started the LiveStrong fitness program but just to use during workouts. The guy that fitted me noticed my left hand (surgery side) was swollen compared to my right. When I wore the sleeve during my first workout the swelling reduced. The following week was when I got the hives and the swelling was in both hands. When the hives cleared, only the swelling in my right hand went away. I saw my oncologist on Friday and he told me to wear the sleeve for several hours a day, so as of last weekend the swelling has not gone down. So I have an appointment to see my PT next week.
I never noticed the swelling until it was pointed out to me. My rings still fit until the hives breakout and now I feel the tightness on the back of my hand (the swollen area). My left hand is also my dominant hand/arm, so it is really hard for me to get used to doing things with my right arm. but I am being very conscientious of that now. I can't really tell if the rest of my arm is swollen and there's no tightness in my forearm. My elbow to my armpit is still numb from the surgery (and has always been pretty flabby LOL) so I'll leave it to the professionals to diagnose lymphedema (LE). Hopefully LE will be reversible.
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sunnyjay - Imy upper left army swollen a little and I got my compression sleeve cup days ago, I wear it few hours a day and hoping it helps my swollen flabby upper arm. My armpit is still numb from surgery from what I’ve been told it might take couple years to get the feeling back or it might damage completely.
Leatherette - I need some happy pill, I’m kinda down today, because I found out my blood pressure is high. Took me couple years to get my BP down, now taxol got it high again. So I hope my BP pill can take it down and tomorrow is infusion again. I need happy pills!!
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Sunnyjay...yay congrats!!
Jen so sorry you will be missing that trip. I hope you get a new trip planned soon.
Finished DD Taxol #2 today! Only 2 treatments left, 4 weeks left!
We had a fun family spring break trip to AZ with our boys in March, about 2 weeks before I found my lump. We were also able to do our summer vacation to my nephews wedding. It fell after surgery and 2 wks before chemo started. I am lucky nothing has been cancelled and we r hoping for a big family trip to San Diego next summer. A few weekend trips are also in works.
Hanging in there this week...hospice has started for my sil. These past months have been very overwhelming.
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Paulettek: One of my regimens is Taxotere aka Docetaxol so some of the SEa are very similar. I check my blood pressure regularly at home and it seems to go down within normal range. My BP is always high when Im at the doctor's office since I usually get called in as soon as I arrive after sitting in traffic and not being able to relax... Then it's time to take the BP test, which is usually 148 to 156 / 90-95. If they take my BP again later, it's down to a high-normal reading. When I take it at home it's at 122 to 135 / 80.I take my BP & temperature at the same time.at home. I hope that whatever is causing this can be put in better control. My BP meds is amlodipine and hydrochlorothiazide.
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Good morning ladies,
runnermum, so sorry to hear your news of your sil, praying for comfort and peace for you and your entire family.
I have DD #3 on Monday, and for the first time am anxious to get there and get going. 17 days till I ring the bell, and youll be a few days behind that, Woot!!!!
Paulette, sunny, I would imagine these BP issues will resolve once infusions are complete. Does your MO feel this is something more than that, I just assumed these things would resolve. However I know that white coat syndrome is a real thing, my hubby has it and his Dr treats his BP based on readings he takes regularly at home. In the office they can get ridiculously high.
Paulette, I felt so bad to hear of your cancelled trip to Japan. Please reschedule and then come back and give us a complete report.
Once we're back at it, it would be so uplifting to hear about everyone's trips, kids achievements, careers advancements, promise me guys that you'll pop back in. We keep each other going now and I want to be able to cheer us on in the good times that are coming.
Leatherette, it's hard not to get down on the low energy days, it's frustrating and I wonder how I'll possibly finish. I felt that way on Mon and Tues this week. Then Wednesday and Thursday were better. Today I have a very busy day, hoping to have the energy to get through. I think I remember you have just one month till you're done. You've got this!
Sunny, your SE may be ahead, but it's got to be easier just knowing that it the last of them. At least that's what I'm counting on. Prayer said for an easy time for you.
I don't know for sure about the timing between chemo and rads, and my RO appt isn't till 10/19, but I was under the impression we'd get around a month break.
My daughter is coming home for a long weekend, looking so forward to some fun girl time. We both love British films and we'll be going to see "Victoria and Abdul" movie for sure.
Hoping for a good SE day so spirits are lifted, and let the planning for our future trip, or at least some daydreaming begin.
Hugs and prayers,
Theresa
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good evening ladies,
I have a little reaction to taxol, last three taxol I could control it with deep breath. Today I can't, it happens close to the end of taxol infusion. My heart beats went to 101 so I informed the nurse so they stopped the infusion and let my heart slow down to normal before they can finish up. So next round they will slow down the drip speed so it might help.
I hope every have a good weekend
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Teese, thanks for the prayers. I know that many prayers have been said for all of us and I known it's been helping. I pray for you all too! Today was a fatigue day for me. I got my neulasta shot and was getting sleepy driving to my appointment so after I got the shot I slept in my car for 20 minutes and it helped get my energy back. I left my Hydro Flask water bottle in a friend's car last weekend and that has been my security blanket throughout this bc ordeal. So ive been so lost all week without it! I known I need to drink lots of fluids to remove the chemo meds from my system. Regular bottled water is not cutting it since it doesn't stay cold. Ugh, I'm just ranting because the hot flashes SE are starting. Haha
Paulette: A similar thing happened to me on my first Docetaxol/Taxotere infusion. My nurse started it slow since it was my first time. My face felt flushed after the first 10 minutes so she slowed it down more. It helped and I was better the next time. Hope the next time will be better for you!
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Sunnyjay - mine is toward the end, and taxol seems to increase my heart rate even on the daily basics. I’m going to monitor and find out more.
I’m hoping tonight is not sleepless to me
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I got my flu shot on Wednesday, the day before Taxol #4. I felt pretty tired on chemo day but got over it after getting the steroid. No one had told me I was getting steroids with the Taxol, but because so many of you are talking about it I asked, and lo and behold I have been getting it. And then lo and behold I couldn't sleep last night. I had not made the connection. The nurse told me that often when your white cells are down your immune system doesn't get much of a boost from the flu shot. Great! She said I should ask the MO when chemo is done if I should get a booster. ! They cut my Benadryl down to 12.5 mg. I didn't feel any less stupid or slurry, but otherwise no difference. I iced my fingers and toes. Anybody having trouble with their nails yet?
Paulette, how are your red cells doing. ? Mine have been dropping more than a half a gram a week. This week it was 10.1. At this rate I will need blood in 2-3 weeks. My white count took a dump this week too. Good luck sleeping.
LoJo & Dodgers Girl So nice to hear things are moving in the right direction. Since I am so bummed about my lashes and brows, your quick return is heartening.
Dodgers, a trip to Japan is on my dream list. Have you been before?.
Jen Runs. Sorry about the trip cancelation, but prolly the best decision. We are missing out on so much, it is like life is suspended while this is going on. Another aspect of the grieving. I had to cancel a big trip to England back when I was getting the AC. Then I just put everything on suspend.
Proud, how long do you expect to be on chemo?
SunnyJay. Hooray! When do you meet with your plastics guy? I'm anxious to hear about the switch out of your expander. I hate mine so much, I cannot wait to get it out. It will be good if they can use the port during surgery. I just realized what RO was. Will you have the surgery before or after radiation?
Runnermum Hope the hospice is helpful for your SIL. So sorry.
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I got my flu shot on Wednesday, the day before Taxol #4. I felt pretty tired on chemo day but got over it after getting the steroid. No one had told me I was getting steroids with the Taxol, but because so many of you are talking about it I asked, and lo and behold I have been getting it. And then lo and behold I couldn't sleep last night. I had not made the connection. The nurse told me that often when your white cells are down your immune system doesn't get much of a boost from the flu shot. Great! She said I should ask the MO when chemo is done if I should get a booster. ! They cut my Benadryl down to 12.5 mg. I didn't feel any less stupid or slurry, but otherwise no difference. I iced my fingers and toes. Anybody having trouble with their nails yet?
Paulette, how are your red cells doing. ? Mine have been dropping more than a half a gram a week. This week it was 10.1. At this rate I will need blood in 2-3 weeks. My white count took a dump this week too. Good luck sleeping.
LoJo & Dodgers Girl So nice to hear things are moving in the right direction. Since I am so bummed about my lashes and brows, your quick return is heartening.
Dodgers, a trip to Japan is on my dream list. Have you been before?.
Jen Runs. Sorry about the trip cancelation, but prolly the best decision. We are missing out on so much, it is like life is suspended while this is going on. Another aspect of the grieving. I had to cancel a big trip to England back when I was getting the AC. Then I just put everything on suspend.
Proud, how long do you expect to be on chemo?
SunnyJay. Hooray! When do you meet with your plastics guy? I'm anxious to hear about the switch out of your expander. I hate mine so much, I cannot wait to get it out. It will be good if they can use the port during surgery. I just realized what RO was. Will you have the surgery before or after radiation?
Runnermum Hope the hospice is helpful for your SIL. So sorry.
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Travel - my HGB didn’t drop from my taxol #3, it actually went up .3, wbc is 7.3 now, went up .9 so I planned to have my flu shot 3 days before chemo. Will try to eat healthy and more meat so keep my blood counts going. My family suggested me to make my own juice such as beets juice, I am thinking to give a try.
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travelhound, the mo has not given me an and date but since i am stage 4, i expect or hope to reduce the frequency of chemo but likely never really end it
Depressing but i only think about it when someone asks really, got next one coming up this friday and was actualy thijnking of driving myself but sort of hesitant now
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ProudI remember your scans came back good.Are you only on Taxol now? I understand now why travel is in the distant future.Tho a short trip can be refreshing.I took a 4 night trip to NYC between AC and Taxol- I took a 3 week break.It was a good thing.Helped me forget.Re your hands:One of the nurses said this week that if the numbness gets better over the week, then it will go away when the taxol is over.I don't know if that is anecdotal or what.When I asked my MO about the numbness she immediately brought up the glutamine.I looked it up on line and actually found research that supports it.I found other research that says the ice helps with the nail issues.
Paulette, your red cells went up!Have you been eating lots of red meat?anything else?
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Travel, I ate hamburger couple times, then steak one night. TBH I tried but I really don't like the taste of meat after my taste buds changed. But I have little bit of meat on every meals. This week I'm going to try out homemade juice and add beets into it.
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What is TBH?
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the numbness in my hands seems to go away when i massage them, hey another reason for regular treat ouf a massage! My onco says to watch it, I do like my onco!
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Tbh .... to be honest
Proud - just wonder is our insurance going to pay for the massage??
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Hello all,
I am doing better-actually went to work for four hours yesterday and feel a lot less anxious about it, but am still pretty tired. Getting dizzy easily. I'm reading everyone's posts and I see a lot of talk about neulasta and rbc counts, neither of which have been a part of my experience. I don't eat any meat, but the thing I have been craving most whenever my taste buds work is saag from a Himalayan place near our house, which is essentially pure spinach. I'm hoping my mouth continues to behave with no sores, and maybe I'll have it tonight.
I started using Aveda scalp remedy, and sadly, I can't smell it (love the smell of Aveda products), but my scalp looks and feels better, and my fuzz looks longer. At night I look at my little fuzz halo in the mirror and try not to get too attached to it! It could still go.
As far as neuropathy, the L-Glutamine makes it a lot better in about a half hour for me, massage and warm/hot shower help, too.
Sunnyjay-I lost my insulated 34 oz cup for a day a while back, and it was totally like losing a security blanket! It cost 20$, so I only have one.
Hope everyone has a good weekend. Dare I dream of doing a little Fall gardening today? I hope I can! May we all get to do something good that we weren't sure we'd be able to do!
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paulette, not thinking massage would get covered, i am on medicare with a suppliment.,so far it has covered pretty much all the nasty stuff. Cept for the affinitor but i got a grant from kolman folks as it was hugely expensive note....it did not work so moved to the taxol
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hi Ladies,
I think many of you are going to finish this journey soon, I'm thinking perhaps we can starT a group in Facebook so we can be Pink Sisters of 2017,we can ask the August group also since some of us are active there too. Let me know what you think?
Paulette
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Paulette, I'd love that .... if folks aren't comfortable sharing full names on this post, we can sending private messages. I would love to stay in touch with you ladies, and get to know everyone better.
I've been having a rough time with the nerve/joint pain, mostly at night. It's great that most days I can do what I need/want, with an Aleve to get by. But we were at a football party last night and I was just ready to go home. (Not drinking contributed to that sentiment too. Our social group drinks. A lot.) oh well. 8 more weeks
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JenRuns - I still have 8 more weeks to go also I can feel my fingertips are getting a little numb especially my right thumb. But overall I finally could have some normal time. Went out lunch with family. That I missed so much.
If anyone send me your real name to me on private message I will add you as my friend then we set up a Facebook group so we can keep in touch. From what I read putting our life together after this journey is not as easy as we thought. Maybe we can give each other supports
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