Weekly Taxol group
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MRIs are not typically done following chemo. And recovery from a lumpectomy is very quick. I think I took two days off of work.
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Ingerp- mine only ct scan is done before chimo whichas I heard cannot defect tiny cells. Therefore how they can be sure nothing is gone elsewhere and how they can monitor us during fô' Up when mammo is for the breast only? You will be reassured with just mammo
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Margun I had a PET scan after my chemo was finished.
Doris
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Margun, Everything in life has its risks. They cannot be sure that they got everything, but they do all they can. It might come back, it might not. We live life to the fullest trusting that the docs do their best.
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DawnS1962-I am happy about the purchase. I get compliments on it, and I always feel the need to clarify that it is a wig. I know I don't have to, but it makes me feel better to disclose. I think I figured out a way to style it, so I can wear it without a hat. I added two partial side braids and connect them in the back so that the beehive area looks intentional. DH said that was the first non-hat look he liked too. I got a short wig at my appointment today, and it will be a good fit for the summer. I did have the same beehive look, so I am convinced it is the shape of my head that I dislike.
I was thinking that something that would have been helpful to other readers is if we rated our fatigue and aches on a scale with each weekly taxol? As I get closer to the finish line, I really want to know what to expect. A coworker of mine is helping her mother go through this process, and she told me that Taxol was going to be harder than AC at the end. Her mother is a couple of months ahead of me. My kids are getting ready to go on summer break, and I'm trying to figure out how much I will be able to do with them.
I am interested in how everyone would rate their SE's. On a scale of 1-10, after Taxol #6, I would rate my fatigue at a 4 (mornings are hard, but after a few hours I am up for working or doing stuff around the house), and my aches on 2 days this past week at a 7. Today I feel much better, but of course tomorrow I start it all over again. I have not taken Benadryl or anti-nausea meds at all on this, and have not been on steroids since Taxol #2. I only take Pepcid and Zyrtec the morning of infusion. Taste buds are compromised for a few days too, but they are back to normal today.
Number 7 is tomorrow, and 5 to go!
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Margun—I don’t know the science but I don’t think any kind of body scan could detect the preliminary stage of metastases. You have to trust that your treatment plan worked. If you’re still concerned, are you doing what you can lifestyle-wise to prevent recurrence? Exercise has the biggest impact
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nondefined, I have my 7th Taxol tomorrow as well. My biggest issue is intestinal distress that used to last days 3-5 and now lasts all week. My stomach is very unsettled in the morning and I'm in the bathroom a couple of times. I have to score it at a 7 only because I have an anal fissure that's very painful.
Fatigue I'll rate a 5. I just never feel rested. I'm tired from the time I wake in the morning. That's gotten progressively worse.
I haven't experienced any aches and pains on Taxol. I also still have my brows and top lashes. I've had tingling in my toes but it goes away. I have a runny nose that started on AC and continues through Taxol. It's not painful just an annoyance.
If I compared the 2, I feel better on Taxol than AC. I've still got chemo brain though and that gets a GiANT 10. So much worse than pregnancy brain. I can't remember what I'm saying half sentence through. Makes conversations with customers very difficult. I am constantly writing things down to remember and then forget them anyway.
36 Days, 4 hrs and 41 minutes left till Taxol is done!
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Notdefined
I will rate! I just had #6. 6 more to go. Last week, the fatigue was awful, about an 8. I found out that my blood count dropped again and they want me to eat and rest more or I will have to skip a week. I feel great today, but I'm afraid that is still the steroid from yesterday. I have only taken anti nausea the night of the infusion and have had no need to take them again. I have had headaches, but that could be allergies since the East Coast is getting hit right now. No neuropathy at this point. For me the fatigue is the REAL issue, and I hate it! Stops me at every turn. I feel like I will be limping to the finish line
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notdefined - Great idea as I am nervous about how I am going to feel as the taxol treatments progress. I will have #4 of 12 today. I do feel better overall then I did during AC. No nausea and feel better overall the few days after infusion then I did during AC. I have mine on Thursday and Sunday I have been feeling like I have the flu - body aches but no fever. Right now I would give body aches a 4. I would give overall fatigue a 5. It gradually gets better until I feel good right before the next dose
I have not had any neuropathy symptoms yet. I am icing my hands and feet in hopes that will help. Taste is definitely still messed up. My eyelashes are hanging in there but I can tell they are thinning. When I get my taxol they inject a Steroid into the IV. They also add benedryl and pepcid.
DawnS1962 - Chemo brain is REAL!! I have to write everything down at work as soon as someone says it or I will forget minutes later!! They know now to double check with me later if I have not gotten back to them on something they asked. Luckily they are very understanding!!
Hope everyone has a good week!!
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DawnS1962-Sorry you are having stomach issues. My stomach does tend to ache for a few days as well, but it hasn't been as bad as my body aches. I have the dreaded runny nose too. It is annoying. My dr. is testing my liver weekly now, and my ALT and AST are slightly over the desired limit. I don't think it will stop my treatment today, but I am concerned that they are higher than normal. I love that you are counting the hours!
Chemo brain is crazy. I had my phone repaired, and they asked me to enter my pattern to unlock my phone. I couldn't remember my pattern! I was to the point that my phone was getting ready to reset itself, and I had to take it to my son's school for him to unlock for me. I have been able to work okay, but I don't have a lot of interactions with others especially working from home. I do have to write more things down.
Hope today goes smoothly!
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The higher ALT/AST has to be from the chemo. Mine were both elevated but last week's lab only showed the ALT higher at 59.
I'm still slightly anemic but it seems better each week.
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Hi Margun. How are you doing with the Taxol? I hope it has been easier than the AC for you. My experience is different, as I had my surgery before starting chemo, as well as scans (CT and bone). I understand your feeling uneasy, I think all of us will have that underlying fear of recurrence/spread for quite some time after we finish treatment. I realize this may not address your question, but I do want to say that cancer treatments and protocols/followup are well researched and studied and so, hard as it may be, I think we need to trust that the doctors know what they are doing and then report symptoms to either PCP or oncologist. Just like they tested/compared whether mastectomy or lumpectomy + Radiation are best/equal, they have looked at the best way to follow post cancer patients. Any symptom you might experience should be taken seriously and investigated perhaps sooner/more thoroughly than the non-cancer patient. HUGS to you!!
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I go for Taxol #8 this afternoon. I would rate my fatigue at 5-6 or so. Aches and tingling maybe 3--varies from day to day, better toward end of the cycle of course. this week the taste has stayed off/bad essentially the whole time! Uggh. But after today only 4 more to go. I have needed the neupogen shot the last 4 times. Means another visit to the center each week which is annoying. I saw MO yesterday and we reviewed the lab numbers--they actually are a little better than 2 weeks ago, but still borderline enough that I need the shot tomorrow, or I could risk having to skip a week....don't want to do that. Haven't heard many others reporting they need the shot so not sure why I do!
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DawnS1962-my ALT 2 weeks ago was 57. Yesterday it was 46, but my Bilirubin was 1.4 which is slightly higher than the top of the range. I agree that it is the chemo. I just hope that my liver is able to sustain for the rest of the treatment, and then bounce back to normal.
Margun-I agree with Loiswb. The doctors want the cancer completely eliminated and have the same goal. Something to keep in mind as well, is all the stress that having scans puts us through. MRI's are quite sensitive, and often show a lot of false positives. Once you have your surgery, you will have more information on where the cancer was. If you had lymph nodes impacted, then maybe at that point you could push for a scan?
loiswb-I have not needed the neupogen shot. Is that because your WBC counts are low? Are they really low? My RBC, HCT, and HGB were below the range a couple of weeks, but my doctor didn't prescribe anything. I feel like the achiness I am experiencing is doing what the shot would normally do. It feels the same as when I took the shot during AC. I'm sorry you continue to have the bad taste. That is the worst. May I ask if you noticed a significant difference between Taxol no.6 and no. 7, or was it just slightly more on all your symptoms?
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loiswb- thank you for you answer and I cannot believe you remember that I had terrible Ac experience. I finished my 4 taxol. Until now it is easier than Ac but I had and have different se. The weirdest was at 1sr taxol: I had pain at my low abdomen like I had during my period and around my liver area. Now is bone and muscle pain. There is some fatigue but i am not crushed like during Ac. However I am reading here that at the and taxol becomes worse than Ac which is terrible. I hope not every one had such difficult last taxol cycles .hugs to you too.
Not defined- thanks for answering. The most difficult part is wait for the surgery and path report to see where we are really. Pre- chimio I had ct and bone scan clear. Good news but incomplete because small cells cannot be detected. Did you have altready surgery or after chimio? I Am having lumpectomy and breast reduction on the healthy breast , as suggested by Bs even though I was oppen for bmx. My Bs sais that will do no difference in her2 positive case. What type iof surgery are you having?
I saw your picture with your handsome son who seems to be a few years younger than mine. Mine is 17. I and Olson all mother with kids they want to do everyto stick around until they stay on their on feet’s and hopefully beyond. Good luck to all of us
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notdefined: Yes, the WBC count is low--2.7 yesterday, but they base the shot on the absolute neutrophil count, which needs to be a certain level before they do the chemo--mine yesterday was 1500 and a few weeks ago only 1300. I can't remember what the cut off level is. My hemoglobin and platelets are also trending a little bit lower than normal but she doesn't seem worried about those at this point. As far as I know the liver and kidney numbers are staying in the normal range.
The taste seemed to be somewhat worse after Taxol #7. I also note more achiness and a sort of weak feeling in my legs at times. I have been able to still walk and exercise some so it is not too limiting yet. And this week am having more trouble getting myself out of bed in the mornings! Once I'm up, I can function generally pretty good. My youngest (and most neediest!) daughter left today on a trip to Myrtle Beach, SC with her friend, so I think this is going to allow me to get to bed earlier (even though I will miss her I am looking forward to the break). She is staying up later with school being out, but still likes me to be a part of her bedtime routine.
I note too some "chemo brain" as a few have mentioned. Can't think of names and forgetting things--just now I put clothes from the washer into the dryer and forgot to turn it on! So far it doesn't seem to be impacting me at work at least that I can tell.
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loiswb-thank you for sharing. Hope your counts go back up. I'm glad I'm not the only one having difficulty getting out of bed. I have been struggling all week.
Margun- I am the same as you, in that my surgery is scheduled after chemo. I had a clear PET and MRI as well, and I hope that everything stays that way. I will be getting a mastectomy with DIEP reconstruction on my right side. I am anxious to get my surgery done and get the results. Yes my son is 7 years old, and he is my sweet heart. Today was his and his sister last day of school for the summer, so working from home will get interesting.
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One thing I've experienced since starting chemo that I haven't seen mentioned is slowing down.
Before I started chemo I moved at a pretty fast pace. I was born and raised outside NYC and always in a hurry to get where I was going.
Now I'm like Tim Conway's old man character on the Carol Burnett show. I walk slower, I get ready in the morning slower. I even eat slower. Everything with me now seems to move at a snail's pace.
Anyone else experiencing this?
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Yes, I move slower too and it is annoying! The nurses actually told me to move slower. Take a shower, then sit down for a minute before getting dressed. It was explained to me that I should take things slower for the time being until this mess is done
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Lauren, I was told not to get up too quickly but no one said to slowdown. It's just so weird. I finish dinner about 20 minutes after my husband and daughter. I can't seem to move any faster. I try when I walk to pick up my pace but then find I have to take a break and rest.
How has your taste been? On AC I lost my taste for most things but in the past week I've noticed everything tastes nasty. It's not the metallic taste I've read about. Everything just tastes gross now. I would have a cup of vanilla ice cream a few times a week. Huge treat because I could taste it. Not a treat anymore. It even tastes gross now.
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Everything tastes gross to me too..... especially food I really liked even water tastes vile.....it's slightly better now as not had a treatment for 18 days but still tastes horrible, almost furry.... even cleaning my teeth has a nasty taste...
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Lilly55, I'm constantly cleaning my tongue to no avail. It's clean but everything still tastes nasty. 18 days and still tastes horrible? Not good
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I've made a decision about my nipple reconstruction. I'm not doing it. It feels so good to finally feel like I have control over something.
I found this picture in Cure magazine and it's what I'm going to do. Not roses. I'm not a roses kind of girl😜.I'm thinking forget me nots.
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Dawn--I'm not in your boat but haven't I heard/read about some *amazing* 3D nipple tattoos? (I think one guy was in Richmond.)
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Ingerp, I've heard amazing stories of nipple reconstructions using skin from the labia which my PS spoke of and 3D tattoos. I just don't want them.
I think the flower tattoo is a better fit for me.
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not defined, thanks for posting the pic of you in your hat. You give me hope. I had my 2nd taxol treatment today, and so far no issues with my hair, but I am very anxious about that. I already have my wig. My hair stylist for the past 40 yrs has offered to come to my home to style my wig and for now my hair the same as the wig. I’m hoping it will make the transition easier. I love the idea of the hat with the wig. You rock😊
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Hi ladies!
How did you get over low hemoglobin and platelets during your chemotherapy? My mom has low hemoglobin and platelets during most of her chemo journey. She actually needed several blood transfusions. I have never heard someone on chemo needing blood transfusion so it’s concerning me. Even after transfusions her hemoglobin and platelets are borderline.
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Kkmay,
My platelets were low. I ate eggs, avocado and papaya. I also drank pomegranate juice. It helped
https://www.healthline.com/health/how-to-increase-platelet-count#supplements
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Katiekins-I'm happy that it helped! I hope your hair stays for the long haul. I had AC, so I knew it wasn't going to last. Hats have been my lifesaver. I also use scarves and headbands with my wig when I don't feel like wearing a hat. I keep trying different things with it to see what best reflects my style. Losing our hair, eyebrows and eyelashes really strips our appearance, and I barely recognize myself without makeup and my wig. The picture on the right is the wig with no modification. I don't like the top at all and it doesn't really fit my style. The left picture is the same wig with braids and apparently the waviness has gone away. I like that so much better, and honestly it is better than my real hair style. The picture in the middle is my real hair before it started to fall out
My advice is to keep playing with the wig to make it work for your style. Edited: since order of pictures was off.
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DawnS1962- I love that! I have been searching for reconstruction pictures online, and I have seen several iterations of what you have chosen. It looks so pretty! On moving slower--Yes! It takes me longer to do everything, even eat! I'm trying not to fight it, and just go with the flow. Regarding taste-I have only had a few days last week where I could tell that my taste buds were off. They went back to normal after a day or two, and I'm wondering if that is a cumulative side effect? Does yours last all the time or does it get better?
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