Starting Chemo May 2019
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santabarbarian, aren't we encouraging!?!
But seriously, everyone, you might have some bad days or bad weeks, but it will get better. You've already come this far. Don't be discouraged!! You'll get through this!
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Thank you Neeli! How are you feeling?
BAMR, MountainMia and santabarbarian, I appreciate your honesty. It's nice to hear that I'm not alone in the way that I feel.
Thank you April0315! I like the picture that you posted, too, beautiful!
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Now it is getting lonely out here... Is it just Nat and me now still going? Two more times! I am already so excited to be done!
I have been thinking of what to get for "my" staff at the end. I want something unusual, and what I came up with is a nice selection of healthy dog and cat treats... Since I don't have children, but a largish 4 legged family, I end up talking a lot about animals with the nurses, pretty much all of which have various animals themselves.. My favorite nurse just came out of school and has a 2 months old black lab, so that is a lot of excitement for her and a lot of stories to tell.
My Taxol #10 went really well so far. I finally have a handle on post Taxol constipation, Mg Citrate in the morning will do the trick for me. I did not do a water fast this time, and found that my WBC had dropped to 2.0, but all values are steadily increasing. Taxol 5 seems to be the low point for me for ANC and WBC, Hgb already stared climbing up starting after Taxol 2. I think that yes, there is an effect of hydration (Taxol #9, at least for the WBC and ANC), but also, at least for me, all values are recovering during the Taxol and the low points are probably still side effects from the AC, whose effects has worn off by then (I had a 3 week break after last AC, so that would be 8 weeks post AC when the white blood cells started recovering).
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Well, I did not expect the post rads fatigue and had not planned around it. Most people do not get 28 whole breast but it's good to be prepared for it in case.
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santabarbarian, I had 20 rads and have some fatigue with it. It's nowhere near what I experienced after chemo was over (and hopefully I'll get better, not worse,) but it's noticeable. I think if nothing else, the accumulation of treatment over the many months just wears a body down.
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Mightlybird. It is just natalie and you. One day apart! We would have finished last Thursday but that bizarre/frightening diverticulitis threw us off for 11 days. Natalie is feeling surprisingly well!! Praise God. My dang cold has kept me from my care taking duties as I don’t want her to catch it with low WBC’s. The mask gets old.
So excited for everyone here. Moving forward to complete healing!! I hope everyone stays with us and we keep this May chemo thread going. It will be fun to check over the years to see EVERYONE doing so well. Interesting and strange how from all over the world we were brought together!!
God bless and healing to everyone!!
J
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Hello May warriors! Congrats Happy!!! I loved the pic. And I’m glad you are done with the ☠️.
I have massive chemo brain at the moment. And I’m tired. That Clemson nail biter did me no favors. Lol
I just wanted to check in since I didn’t get a chance to yesterday to wish HappyAnyway a hearty congrats, to catch up on the wisdom of those who’ve cheered us on despite being done for awhile, and to send my love and prayers to those still on the journey. The end is near! Keep strong
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I’m so excited for everybody finishing chemo and moving on to any other treatments or rads that may need to be done ♥️ Hopefully everybody keeps checking in... I’m not finished chemo until November so I’ll bet reading anything that gets posted at the very least.
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Hi Britt. You will get there!!! We do #11/12 tomorrow. Hard to believe we will be done with Taxol next Tuesday. Natalie felt great this week!! Hope the next few will be the same.
Hang tough and I’m praying every day for everyone!!
J
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thank you! I’m so glad Nat is feeling well. I can’t wait for all of you to finish
I’m thinking of everybody daily.
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hi everyone- Mightlybird01 and jrom- You are both nearing the long awaited end. So happy for you both.
Mightlybird01, the pet treats idea for your staff is very unique. I think it a great idea to thank them for your care. Hoping your txt. goes well this week . Hoping your values continue to do better.
Jrom-is your cold better? My hubby and son just got over colds, now my sister has one. Amazingly, I have avoided it, thank goodness. Hoping Nat does well tomorrow.
Brittandherboobs- will keep you in my thoughts and prayers. We are still here to support you.
Hi Happyanyway ,Lacombattant, and palmetto- how are you feeling?
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UpstateNYer. Thank you for asking!! Yes it is much improved. I worked out and went on an hour and half hike with Natalie so almost back to normal. Hope all of your family is 100% now!! Thank you for the prayers for tomorrow.
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Today I am NOT going to chemo. So exciting as Tuesday Chemo has become a routine. I'm still tired, still thristy, but hoping from on out I start to feel a little better each day. Going to hop on the treadmill and see if I can get some of this chemo circulating and flushed out.
Hope everyone had a nice weekend.
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hi everyone!
Jrominger: good luck to Nat today, she is almost there! Happy to hear that your cold is better and you are back to hiking and working out.
HappyAnyway, Palmetto, how are you doing?
Mightlybird, forgive my chemo brain, but when is your 'spa' day?
Britt: you WILL get there! It feels daunting ta the beginning, but you keep moving forward. Day by day, week by week, we will be here to cheer you up!
April, ditto the feeling - first Tuesday without chemo! Enjoy your workout!
UpStateNYer, thank you so much for asking about me - I am doing not too bad. Fatigue has been a b*tch, but it was kind of expected so I just rest when I need it.
I met my RO today, I will have 25 sessions, axillaire, chest wall, intramammary nodes. ... I will be throughly cooked through, LOL.
I am keeping everyone in my thoughts and prayers, please be well!
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Hello everyone! Jrom and mightlybird- the end is in sight! Hope Natalie crushes 11/12 today. Mightlybird, hope your numbers stay up and you stay on track. April 0315, I echo the tired and thirsty. I hope I can muster some energy for a few workouts this week like you! So far, I've just been a slug, and I've been ok with that. But I figure the better physical condition I'm in for surgery, the better off I'll be.
Thank you for checking in UpstateNYer and LaCombattante! I'm a little more fatigued this last time around, but I'm doing my best to take it easy. How are the rads looking for you both?
I'm looking forward to NOT being in the chair this Thursday. Now I just wait for surgery. I go for my pre-op this coming Friday morning. And my MRI next Tuesday. Then Wednesday, I'm leaving for my cruise! I'll be so happy for a complete break from everything for a few days.
You all are in my prayers every day! Hang tough!
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palmetto... I am also trying to get into a more reasonable shape for surgery. Mine should be a week after yours (I’m hoping they don’t want to do it sooner, I have a vacation planned). I’m no where near what I was activity level wise as I was last year. I did 20 min walking on the treadmill and 20 min of laps in the pool. My total weight gain thru chemo was 10 pounds. I feel sluggish and puffy. Trying not to get too worked up about it. Obviously there are bigger issues in my life (and all of ours). How did you decide on the DIEP? I’m intrigued by it, but I also just want to be done with minimal down time. We are doing direct to implant reconstruction (I already have implants so I can skip the TE). They’ll be smaller but I don’t care at this point.
Nat and Britt.... you’re almost there!!!!!
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April... I lost weight on chemo, but I think a lot of it was muscle mass. I feel sluggish and puffy as well. I did keep up with some swimming, but I am nowhere near as active as I was a year ago. I'll incorporate some walking and yoga now that I'm completely done with chemo. As for DIEP, I chose it because 1) I had personal hangups about having foreign objects placed in my body, 2) I didn't want to have to replace those objects every 10 years or so by undergoing more surgery, and most importantly, 3) the DIEP allows my surgeons to at least try to preserve some sensation by doing neural microsurgery. The downsides though, are that I'm going to be a smaller size than I am now, the recovery time seems longer and I'll have that scar from hip to hip. I'm still not 100% that I'm making the right decision, but I'm making the best decision with the information I have.
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Some encouraging words from my own experience: yesterday husband and I went hiking at a state park in Wisconsin (about 4 hours away from our home.) It's a special spot geologically due to movement during ice ages, and the fact that the last ice age actually bypassed this particular area. The park has a smallish lake and on one side are bluffs rising about 500 feet above the lake. We hiked up, and then hiked down, what in essence are stone staircases. Yep, imagine a stone staircase -- slick with damp because of the rain and humidity -- rising 500 feet. That would be about 1000 steps up, and then 1000 steps down. Of course, remember that the steps aren't all the same size or height. Some require a pretty good lift to get you to the next step. And it's steeper than a stairway in your home. We did that. I did that.
On Saturday I'll be 3 months past final chemo. Some of you have been hiking throughout chemo (Nat, LaCombattante,) and some of you haven't felt that well or otherwise had the opportunity. Some of you will struggle to get back to doing what you "used to do." Surgeries, radiation, other procedures may make that seem a long way off. But you can get there. Just keep doing what you've been doing, and what I did yesterday. Take one step at a time. Sometimes it was slow going. Sometimes I needed to rest a moment. But I kept going. You will, too. One step at a time.
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I love that, MountainMia. One step at a time... literally and figuratively. And many congrats to you on that monumental accomplishment! Our bodies are indeed full of wonder and power.
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LaCombattan, my SPA day is tomorrow.. REALLYY looking forward to it.... I hope the radiations will be ok for you. I am trying to avoid radiation by having a mastectomy. But have not yet 100% made that decision. I still have to met with the breast surgeon to discuss it, so far only emailed with her. I have a choice of two different hospitals/surgeons, and I can't even decide which one I should go to. It is so hard to make all those decisions.
The one decision I think I have made is that I won't have any kind of reconstruction if I have mastectomy. Am I the only one who has made that decision? I have very small breast to begin with (barely A cups) so it just does not seem worth it for me to injure another part of my body (stomach) to have a fake breast. I definitely don't want implants, I don't know if they even make them as small as I would need them :-)! From what I am reading here, DIEP flap can also be done later, should I change my mind. I am still considering myself "young" at 50, so in a few years I may feel differently. But my husband also thinks mastectomy without reconstruction would be my best choice, given I am so active and don't want to have an extended down time due to the extra surgery. I will definitely keep my healthy breast (I am not BRCA).
April, hope you feel more energetic soon. Loosing weight is hard! I lost about 20 pounds from beginning of diagnosis to right after AC.I was never overweight, but the pounds have been creeping up over the years, so I am so happy I lost all that weight. I have not lost anymore on Taxol. Most of my weight I lost due to the anxiety BEFORE I even started treatment. It was bizzare. I had more side effects from the waiting and uncertainties than the actual chemos. I must say it almost feel unreal to me, but I feel pretty much totally normal right now. I have cut my refined sugar consumption to pretty much zero and no alcohol during chemo either. That helps a lot in keeping weight down, although I can tell already it is getting harder, as I see those cookies in the kitchen cabinet and my appetite has come 100% back. I may have to throw them in the garbage. Prior to diagnosis I had a sweet tooth. I so hope I can keep the sugar down from here on out! It will be a struggle, but I really don't want to gain that weight back again. My fitbit helps too. It tells me how many calories I burned every day. So when I get up to 13,000 steps, I can have a bit extra!
Palmetto, good luck with the MRI. And wow, going on a cruise sounds like a great way to make up for what you have gone through during the last few months.
jrominger, hope Nat had a good session and #11 feels as easy as #10.0 -
Hello EVERYONE!! So good to hear from all of you!! Nat finished #11 today!! Her numbers were up and the best they have been for 5 weeks! Praise God!! She had a great week last week but did start to see neuropathy in her toes. First time ever. They hurt more tonight but she thinks they may hurt because we really iced hard today. Maybe too hard. We are very grateful for where we are!! One more to go!
Mtnmia your post was very inspiring and gives us all great hope. We love Wisc and spend a lot of time there.
April with your determination I bet this 10 lbs will be gone before you know it!! It's supposed to be 32 in Flag tonight:(. So happy you are no longer in the chair!!
Lacombattante praying the rads will Be easier on you than you expect!! When do you start? You will be hiking throughout the whole thing!!
Palmetto walking, swimming, yoga you will be back in fighting shape before you know it!! Blessings with your surgery decisions!!
Mightlybird the 3 hr water fast seemed helpful again 3.4 WBC's ANC 2.0 Praying for your day tomorrow Natalie and you will be done next week!!! We are doing almost the same. We will do a DMX due to the BRCA2 with no reconstruction We've been partners since our teens, now in our mid to late 50's those girls served their purpose:) I'm 100% behind whatever Nat wanted but I am relieved to see her not go through any additional surgeries. I just want to hold her hand and put our toes in the sand for another 3 decades!!
What amazing women you all are and I pray every step you all take and every decision you make will turn out perfect!!
Thank you all for your prayers and I will continue to do so for all of you every day. Hang tough.
Jay
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Palmetto, thanks for the encouragement and sharing so much of your journey. My PS appointment is next Tuesday. He is a micro-surgeon and has done a lot of DIEP, I will share my goals with him and see what he thinks is best for me. I've had implants for over 15 yrs, so having them doesn't bother me (and I've had no issues with them) so I"m not adverse to them. However, I do realize that I'm getting older (51) and repeated surgery isn't something that I particularly look forward to. But more than anything, I just want to get back to my regular life. I'm tired of recovering from something. Doing my best before surgery and then I have the rest of my life to tackle the extra pounds.
Mightlybird... good for you for knowing what you are comfortable with and hubby being on the same page post mastectomy wise. The beauty of all this is that we all get to make our own choices, and no matter what they are they are all right for each person. I started dropping a few pounds on AC (I was so sick) but once my appetite came back, I ate my normal amounts but my activity level was so decreased. Anyway... I did well yesterday, here's hoping today is another good day. We are getting rid of refined sugar as well. I just love ice cream so much.
MountainMia.. awesome job on those stairs. I could picture them, and they looked challenging to me! Thanks for the encouragement.
Jay!! Woo Hoo number 11 is DONE. one more. Can you believe it???? That last week crept slowly for me. Hope it passes quickly for you and Nat. Flag is nice and chilly now. Enjoy that nice drop. It's under 100 here, my pool is getting too cold to swim in, but that trails are looking good. Those rattlers should be hibernating soon.
Going out to lunch with my some friends for a birthday celebration. I'm actually really looking forward to the attention not being on me.
Happy Wednesday everyone!
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April, I hear you on the ice cream!!
Had my onc meeting today and afterwards infusion. My neutrophils had gone down (1.57) again (yes I was drinking quite a lot), while the WBC as a whole keeps going up. I asked my oncologist what he thinks is going on with the ANCs, and he said that they don't mean too much to him as long as the don't go down consistently over several cycles, as the lifespan of those are only a few hours in the blood. So if I came back a few h later, they may be totally different. Life cycle of ANCs is still very poorly understood. I thought this was interesting and I confirmed by doing a quick pubmed search.
https://www.cell.com/trends/immunology/fulltext/S1...(19)30102-4
So here we are trying to find cure for cancer and don't even know much about basic functions and life cycles of blood cells....
He also re-iterated that everything from now on is a bonus. I should try and get the maximum benefit of chemo and do all 12, but more often than not he had to stop patients after #10 because neuropathy became so bad. I still don't have any in my fingers and toes. Sometimes I have a shiver down my legs, like a fever chill, but it only lasts a few seconds and it is affecting the muscles. It is very minor and then does not come back for days and it does not affect my movement at all. He said it could be some form of neuropathy but he really does not know.
Jrominger, I am sorry to hear about Nat's toe tingling. Yes, it can certainly be too much ice too. I hope it resolves quickly. I am glad that I am not the only one choosing no reconstruction. Yes, it is great that everyone can make their own decision, but I would feel I could make a mistake, if I am the only one deciding to not have recon.
Good healing vibes to everyone who is already in the healing stage and strength to the rest of us, who are still going through treatment.
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mightlybird I hope you are able to do all of them.... With TNBC, it makes sense to slam it as hard as you can.
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Hello everyone, Thinking of you all this evening. Just wanted to report I finished rads today. No bell ringing was offered, but that did matter to me. Hoping that was the last leg of this journey. I have a follow up with RO in November. Also taking my AI's and no noticeable se's so far.
Sending healing thoughts to all😊
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Thank you santababara, I will definitely try. Certainly if I feel like I did for the first 10.
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UpstateNYer congratulations on finishing rads!!! So extremely happy that this was the last leg of your journey....forever!!! Now just get back to your normal self and enjoy life. We will continue to pray for your complete recovery. Please keep in touch!!!
Mightlybird. Our oncologist may drop Nat’s last chemo down 20% just because her neuropathy came on so quick. Her right big toe is sure hurting her a lot. A bit swollen but we still did a crazy 4.6 mi hike today. Otherwise she is feeling good. We have also heard that they tend to over treat and a reduction is no big deal but as santabarbarian says finishing with the full dose being TNBC could be what we should do. We’ll advise as to what is decided on next Tuesday’s final Taxol!!!! Also Nat’s best friend and also our next door neighbor did not do reconstruction and are very happy. APRIL is 100% correct though on whatever each individual decides is absolutely the best choice and you all deserve everything in life!!
Happyanyway how are things 5 days post chemo?
Blessings to everyone!
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Believe it or not, on Saturday I'll be 3 months past final chemo, and tomorrow I have my 3-month followup appointment with MO. I don't know what is typical for an appointment like this. I'll show him my fingernails that still have stripes from chemo. He'll see that my hair is still very short (shorter than he told me was likely by this point.) I'll tell him about my tinnitus, which sort of drives me nuts when things are otherwise quiet. I'll ask him if he's coming to my birthday party later this month (he and his nurse were invited.) And I guess I'll ask him about what we do next time, if we have to do this again. Other than that, I don't have a lot of questions for him, and he's unlikely to have much to say to me.
Might be a quick appointment.
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Congratulations Upstate NY, on finishing rads and having no SE on the AI. That is very important too, as those SE would be long term.
Mountain Mia, don't get discouraged with your hair still being shorter. Everyone is different. It is growing and that is the most important part.
I had terrible tinnitus many years ago, when I finished my PhD. It bothered me so much, I could not sleep for about 3 months. I think it was due to burn out from the efforts, of finishing the PhD, defense etc, but I also went to a loud pop concert just before and had a preexisting condition in that ear (perforated ear drum many years prior to that, that had completely healed though). The only thing that helped me is accept it that this will be my new normal and pay as little attention as possible to it. I guess it is easier when you are 30 dealing with this, but honestly it drove me crazy at the time too. You can ask my family, they talk about this episode until today, as I started shouting at them when they dropped a fork on the plate as it released a horrible loud ringing in my ear! I was hard to tolerate during my tinnitus time! I had notice that when I managed to focus on something else that fascinated me it went away or got much quieter. This was a learning process and it may be different for you, but my tinnitus completely vanished withing a few months (I don't remember how many). Maybe go and see an ear/nose/throat specialist, but I don't think they can do much about that. I think more important is reprogramming the brain of not listening to the the tinnitus, maybe councling will help with that.
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Thanks, mightybird. As to the hair, it is just a fact that he told me it would be longer, but I've accepted it fine and am glad it is growing. For the tinnitus, yes, when I'm busy with other things, it doesn't bother me much or at all. When I am quiet (like lying in bed, waiting to go to sleep) it is incredibly loud and often disturbing. I know there is not much, if anything, that can be "done" about it. I have an appt with ENT later this month for a hearing test and ear exam. Other than that, all I can do is wait and hope it resolves some over time.
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