Starting chemo February 2018
Comments
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jo-have you started hormone blockers? I have and have also had some vision issues. It’s most likely a side effect of the AI, but I’m having a brain MRI Thursday to rule out any problems. Definitely tell your dr tomorrow-be prepared they may want to do an MRI to be safe but try not to let it worry you-it’s most likely one of the gazillion meds we have to take/have taken.
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colleen- I'm hormone negative and Her2 positive. So no hormone blockers. The double vision has diminished but the vision is still very blurred. I see my surgical oncologist tomorrow and I will address the issue with him. I'm not certain this is his area of expertise but I will see my Mo on Friday. Thanks for the reminder that there's always some type of side effects from these chemo medications, hormone Therapies and targeted Therapies. Thanks
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I’m sorry I should have looked at your info! But yeah, I’d say it could easily be a side effect of one med or another. Good luck and let us know what they saay
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Bad vision is unfortunately a lasting side effect for me too. Mine got so bad during treatment that I could barely read, even with glasses. And at night I was seeing triple! I'm 3 months post-chemo (wow, just realized that) and one eye has almost returned to normal but I still have double vision in the other.
Originally when that all started my MO said the vision may take up to 6 months to clear up/stabilize.
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CBOK and Colleen_ Thanks. Sometimes I have to do a double-take when I realize I am 3 months post chemo. I did have Vision difficulties during chemo with blurred close vision. I had forgotten how I was unable to read or do my paperwork even with glasses on because my vision was so poor. My vision was slowly starting to improve and then I had this episode with double vision. My surgeon did a visual test on me Tuesday and he was not concerned. I see my Mo tomorrow and I will discuss it with him., my most serious side effect from chemo was the deterioration in my close vision. I don't know if I should wait longer to have my eyes examined. I am due for my annual eye exam. Chemo it's the gift that keeps on giving.
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I was diagnosed with a large posterior cataract today. I'm waiting for my Mo to give the ok. A year ago I did not have any cataracts. Im 59 so its age related. There is a family history. Approx. 2 weeks ago, I had already stopped driving at night because the glare from the street lights aggravated my vision. I started using Uber more. I'm relieved it isn't anything more serious. I still have my running. LOL
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jo- I'm glad you finally have the answer to the double vision issue. Did they confirm the cataract is not related to the treatment? Either way, glad you have an answer
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jo- sorry about the cataract but at least you know now. It's funny how cancer can change your perspective as to be relieved about a cataract.
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you are correct. I am relieved it's a cataract. My Mo did tell me he believes the chemo sped up the process. One year ago I did not have a cataracts. Now I do not have any functional Vision in my right eye. My Mo still hasn't given the go-ahead for the cataract removal. And I am eager to schedule this procedure ASAP. Not being able to drive at night is a detriment to my social life. This to involves patients and it will be resolved soon. Thanks for the support and have a wonderful weekend.
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Hi everyone, just checking in.
jo, glad it's 'just' a cataract and fixable.
Colleen - hope you get those MRI results soon & that it's all nothing.
I finished rads on Sep 11 and just had a follow up with my MO. We're not going to do tamoxifen. He said he didn't have any evidence to recommend aspirin for prevention of recurrence and given the news recently about it possibly causing more harm than good, he's not recommending it.
He's sending me to an endocrinologist however as my DEXA scan shows I have osteoporosis
He mentioned I'd probably be put on Prolia or Zometa. On the plus side, he said these drugs sometimes seem to prevent bone mets so there's that....
I've finished the first 4 weeks of school. All is well, lots of assignments already. Handed in 2 papers last week and next week there's a midterm, an oral presentation and another paper due... I'm enjoying it but still trying to figure out our routines and how to pace myself, get enough sleep, exercise, see my family, play with my dogs and eat well - and still do well in school.I've been going wigless because my wig is itching me and I can't pin it back nicely for clinicals. My hair is still very short and fine and I'm thinking of ordering another wig and those little caps to go under the wig to prevent the itch. My eyebrows are growing in and so are my eyelashes - I wore mascara first time this week! My skin looks suddenly worse than it did during chemo. I have a theory that for me chemo was almost like a strong exfoliant - suddenly my face looks older (when I have the wig on, I look younger. I think the short/no hair is much harsher). Also, holy hot flashes - more numerous and stronger than during chemo.
I'm getting blood work next week but it's just the CBC and he'll test estradiol and FSH to see how menopausal I am.
Other than the sudden crap news about the osteoporosis I've been feeling good. I guess I'll have to come up with a good exercise plan to keep the osteoporosis from progressing.
Hope everyone is well! I miss chatting with you guys!0 -
Hi all,
Finished the CIBC run for the cure today! That’s my first 5k in about 20 years. Raised over $1500 for cancer treatments and got some good exercise along the way. Hard to believe considering how beat down I was after my last chemo treatment in April. If you are interested in running after a long break like me, look up “couch to 5k”. It was a great help, and a very gentle training schedule.
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congrats Walden! Yay you!
I just got the results of my first blood tests since I finished chemo (in july) and rads (sep 11) and my wbc's are STILL in the gutter. They've not budged since the last test I had in July. Now I'm freaking out since I'm in school and there's sickness everywhere. Also, wth - why aren't they coming back? The mind goes to scary places.....
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moth-congrats on school, i am very impressed that you've taken on this challenge.
I am sorry to hear that your WBC has not recovered as fast as you would like. Can I ask if your blood test was part of routine follow up? My MO has done no blood work since my last chemo treatment, although I was anemic, and had low WBC at my last chemo (within typical low levels they expect for chemo). She seems to have no plan to do any future blood work for cancer screening, estradiol monitoring, or general health. All of this surprises me still. Is your MO taking a more active approach to blood tests? Just asking because I think we are being treated at the same cancer center, but every doctor has a different approach.
In any case, since my MO has no interest, I asked my GP to test my blood for iron, thyroid, and estradiol. My GP thought the tests were reasonable and included a few other things with it to check my general health, including WBC. I'm 5 months out of chemo and it came back slightly low. I was told it is common for this to take a while to recover fully because the bone marrow is relatively slow at replenishing WBC. Did your MO give you any feedback?
As far as getting sick goes, I know how you feel. My son is back at school so I'm expecting to be exposed to many bugs and have already pushed through 1 cold in the last few days. I'm trying my best to wash my hands and not touch my face in the hopes I can minimize some exposure. I think that's a good practice no matter what your WBC.
Other healthy practices I've started include multivitamins, vitamin D, calcium, and shifting my diet towards protein and calcium rich foods (a little tricky because I'm a vegetarian. Incidentally all this advice about diet and vitamins came from the BCCA pharmacist. Perhaps they could give you specific recommendations for WBC recovery? Also try the dietician line at 811 and ask for a cancer specialist. They have given me many great diet and excercise tips over the course of treatment and beyond.
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Congrats Walden1 on the run! Maybe one day I would be ready to go back to running. I haven't done that for years now.
Moth, i hear you about illness. A lot of my students were absent from school recently and i got a cold. Contrary to you, i would be glad to have a MO who does not require blood work. I hate needles and now I don't have my permanent catheter so I will really be spared with blood work and other needle involved test/treatment.
I haven't started yet radiation. The fact is that my breast is "flat" after lumpectomy and I will need plastic surgery. My BS said that I should do it before surgery but as always i have been procrastinating. I don't want to have a second surgery and if i have too i would like to have it next summer when I am off of school.
I asked the radiologist about getting out of radiation as I had a 100 percent response to chemo. He told me that they don't know if people in my case should do radiation or not. They are doing a study right now about having radiation or not when pathology from l lumpectomy comes back negative after chemo. Maybe in 5 years they will say no need for radiation. Thw radiologist wants also to radiate my armpit as there was a suspicious node on my 1st MRI before chemo. Pffffd
A while back, some ladies were complaining about join pain. Well i have that too! If I sit for 25 minutes i have pain/stiffness on my lower back and knees. It is like i am an old granny.
And I have still SE from taxol even more than 2 months after the end. Neuropathy had not diminished at all my nails are still horrible, my taste has not come back to what it was before chemo and my hair are not growing. I don't know whether i will have to keep my scarves on my head indefinitely. Taxol was worse than AC for me because AC SE are really temporary whereas taxol ones seems permanent.
I still enjoy the school i am at even though one class is giving me a hard time. I really need to find a good way to reach those kids but i don't have time this year to create 2 different planning for the same level. I need to succeed.
Cheers everyone!
Laurence
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Lolotte19- I also had pain and stiffness as you described. In fact, about 6 ladies at one of my radiation appointments were sharing stories about that exact problem. Up until then I thought I was the only one. My physiotherapist said that chemo temporarily changes the way your muscles repair themselves so it is common to have stiffness and aching for awhile (1 year in some cases). Mine was pretty bad for at least 4 months after chemo, but now it's gone. I also lost some nails and eyelashes well after chemo, but they are now growing back. Everyone is different in terms of recovery time, but it does get better
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Moth-found this info that you might find useful. Some interesting tips about diet and vitamins near the end
White Blood Count & Diet
Question:
Is there anything that can be changed in the diet to bring up white blood cell count?
Answer:
Low white blood cell counts (WBC's) or leukopenia, can occur at certain times throughout chemotherapy. Most of the time, blood counts will return to normal before a person starts the next round of chemotherapy, and also after cancer therapy is completed.
WBCs and all other blood cells are made in the bone marrow, so radiation to bones, especially as a child, can cause chronic suppression of blood cell production and low counts (1). Most cancer patients, however, will recover their WBC much more quickly. Keep in mind that the amount of time it takes for WBC to return to normal varies from person to person.
While no specific foods or diet changes are proven to increase production of white blood cells, if you have low WBC (leukopenia), it is very important to practice good hygiene, hand-washing, and food safety practices. Neutrophils are the cells that fight bacterial infection. Neutropenia, which simply means low levels of neutrophils, occurs when Absolute neutrophil count (ANC) falls below 1500 (2). When this happens, a person is more susceptible to infections.
If your ANC is low, you can minimize your risk of infection by using an anti-bacterial soap and warm water, and scrubbing your hands for 15-30 seconds several times per day, and every time before you prepare food (4). If you have neutropenia, you should avoid raw meat, eggs and fish, moldy or expired food, unwashed or moldy fruit and vegetables, and unpasteurized beverages, including fruit and vegetable juice, beer, milk, as well as unpasteurized honey. You do not need to avoid fresh fruit and vegetables, because this practice has not been shown to reduce the number of major infections (5). However, you should wash these foods thoroughly before you eat them,. The American Cancer Society's recommendations for foods to avoid for neutropenia can be found here (6).
Good quality protein is important for cancer patients to include in their diet, because our bodies need the building blocks (amino acids) from the protein we eat to make the new WBCs.
If possible, consult with a Registered Dietitian (RD) at your cancer center for an individualized nutrition plan to address your needs during cancer treatment. The dietitian can review your food intake and ensure you are getting adequate protein and other nutrients during and after treatment.
If your diet is poor, or you are having a lot of trouble eating during treatment, you may benefit from taking a multivitamin and mineral supplement with vitamin B12 and folate. The body needs these two vitamins to make white blood cells (7). However, always talk to your doctor or dietitian before you take any dietary supplements, because some of these products should not be taken with certain chemotherapy treatments.
The original question and answer were generously donated by Diana Dyer, MS, RD a cancer survivor, registered dietitian, organic garlic farmer, and the author of "A Dietitian's Cancer Story: Information & Inspiration for Recovery & Healing from a 3-time Cancer Survivor."
Question and Answer updated by Jennifer McIver, on behalf of the ON DPG
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Lolotte, I'm so sorry that you still have all those awful symptoms! I finished Taxol in May. My neuropathy is finally getting better, so wanted to share with you that I've been getting acupuncture between my toes every 2 weeks, and for awhile once a week when it was really bad. Also foot massage supposedly helps to move the toxins out, so I did that too, along with vitamins and supplements (b-complex is the only one I am still taking). My nails are still gross but getting better. I still have some scalp showing, but also getting better. I'm also a teacher so I can relate to class challenges! I need a lot more sleep than I used to in order have the energy to be a kind and patient teacher.
Wishing you all wellness.
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Moth- I'm almost 4 months post chemo. My white blood counts still range from 2.1 to 3.8. Mine collagist isn't concerned at all. My neutrophils are good . All other areas of my bloodwork have consistently shown Improvement. My hematocrit and hemoglobin have finally returned to normal.
I was on TaxACT ear and my hair is growing back in nice and thick. I don't know where all this gray is coming from though LOL I've always been a natural blond.
I have the occasional joint pain with herceptin. It never lasts for more than 10 to 15 minutes. Most of the time it's in my right humerus and left hand .
Karen- I'm sorry for the loss of your uncle. It's always difficult to lose a family member or friend who you have special memories.
Claire love your pictures. What a gorgeous Fall Foliage.
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Hi everyone - just checking to wave hi! I've realized my very early stage osteoarthritis started acting up again (I have it in my second toes and one of my thumbs; dx'd before bc). It was quiet and dormant during chemo - now I'm thinking that it was the steroids keeping it at bay. Now I'm rummaging in the drawers to find the Voltaren again
. My skin is looking worse too. And I'm getting hair everywhere - including on my chin and cheeks lol. Like seriously??? I've never been fuzzy before but now in certain lights, I want to run for waxing kits straight away. But other than that life is good and I'm enjoying school. First midterm was last week!
I got my dexa scan results and it's just the lumbar region that shows osteoporosis and it's at -2.5 which is just the dividing line between osteopenia and osteoporosis. I'm hopeful with treatment I can tip back into osteopenia. I'm seeing the specialist in Nov to see what he recommends.
Laurence - sorry you're still having neuropathy and not feeling like yourself. My nails are still crap too - I'm babying them along to get them to grow out as I have lifting on most of them. I think if I'm careful they'll grow out to the healthy part in about 2 months.
Walden - thx for the ideas. I'm starting Vit D again now (and I guess from now on it will be a year round thing. before I was just taking it in the winter). My B12 is measured yearly because I'm vegan and it's always high so I don't think that's it. But I think adding a multi back into the mix now that chemo is over is probably a good idea. I might be deficient in some trace minerals & given the beating that our bodies have taken, they need lots of babying.
jo - thx for sharing your similar slow slog back up to normal WBCs. I keep forgetting that we were injected with incredibly powerful medications, the repercussions of which will probably ripple out for many months until the healthy cells recover.
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moth- in my family we all tend to develop osteoarthritis in our forties due to being small, light eyed and fair-skinned.. glad you're doing well in school. Have a great weekend
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Walden: congrats on the 5k! That's terrific! I'm doing a 10 mile ride tomorrow! My first and I'm really excited..velocityride.org
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Moth- I have to agree with you regarding the steroids and arthritis. Prior to chemo I would occasionally get a flare-up of my Right thumb and wrist. Up until . 4 days ago, I was pain free . Now, I'm experiencing moderate to severe pain in my right thumb and wrist. This too shall pass.
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butterflylily- enjoy your first 10 mile bike ride.
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Hi everyone, I just got caught up on all the posts and I'm so glad to hear that everyone is moving on and doing some really exciting things (school, exercise, jobs, raising money for bc) post chemo, and for some post surgery and rads too!I seem to be the caboose in the group- finally finished all my chemo 2 1/2 weeks ago. I started with 6 rounds of TCHP, had a lumpectomy, and then it was recommended that I do 4 rounds of AC chemo. I cried for a minute when my onc told me that, then I pulled on my big girl panties and got back in the chair. The first round wasn't bad, and I thought “Oh, ok. I can totally do this". Then they got progressively worse, as they do, and I'm still recovering from round 4, but doing better every day. I was told there is no more chemo left for early stage bc so I don't have to worry about going back- I found myself worrying about that after the experience I had! I'll be continuing HP, and also starting 6 weeks of rads on the 29th of this month. If not for the extra chemo I'd be done with radiation by now. The last 3 months I have felt so stuck in my never ending chemo treatments, and was trying to patiently focus on getting to the end of that. It's been a long year of treatment (and not over yet!). Here's a pic of me celebrating the end of chemo for the second time. So glad to be done! Again!
Have a great day ladies!
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22fightor- congratulations on finishing your chemo for the second time.. You've had one hell of a ride. Your picture and poem are wonderful. I'm receiving h&p until mid February. So far, I haven't had any issues with h&p. So good luck to you. And hopefully this will be smooth sailing until you're also finished with the h&p
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22fightfor - congrats!!!!! you rock girl. You've been through such a long slog & look at your beautiful smile!!!
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22fightfor- congratulations on finishing what must have felt like never ending chemo. You look beautiful! I hope the rest of your treatment is a breeze. I’m on just the HP and it’s easy. No premeds just one hour of infusion. I have no side effects, no diarrhea. 6 weeks of radiation was also pretty easy, just annoying to keep driving there 5 days a week. The hardest part was the daily reminder that I have cancer. The treatment itself was not a big deal After all that chemo, hopefully the rest will fly by easily for you. Almost there....
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h&p have been easy. Unfortunately for myself it takes several hours. Labs, oncologist, order meds and wait for the meds. Sometimes my infusions take 60 Minutes other times 90 minutes. It all depends on the nurse for the day. Even though my oncologist stated I did not need a 30-minute rest between herceptin and perjeta because I've been on it since February of 2018 with no side effects. However it will end February of 2019. But you should do very well on it.
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22fightfor- congratulations! This fight is not easy. You're doing great. Take one day at a time.
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Hi everyone, sorry not been around lately. I just needed a break from talking about and reading about Cancer. Now that I see some of you are just finishing your chemo, I had a pang of guilt. 22fighter, wow, what a long trial this has been. Thanks for sharing the photo.
to all the rest of you, I've been thinking about you all, just away.
Me, I'm doing pretty well. My worst complaint is my hands. I have developed trigger finger in both hands middle fingers, as well as Carpal Tunnel Syndrome. Doctor believes it's from the AI (Letrozole) that I am supposed to take for the next 5 years. Anyway, I'm off it now and will soon be starting another brand of the same drug. Sometimes depending on the brand, they have different fillers that cause side effects. Other than that small issue, glad to be alive and well, riding my bike taking pottery and mindfulness classes and walking my dogs.
Wishing all you all happy healing.
Take care
Laurie
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