+ Reply
Log in or Register to participate in these discussions
Let's Talk Chemo





Post your questions or experience with chemo below...

This is a continuation of this great thread:https://cancerconnection.ca/discussions/viewtopic/48/35831
31 Replies
Boby1511
501 Posts
Chemo sucks
IlaE
16 Posts
Hi everyone,
My chemo treatment starts on October 15th.  I'm working on the mental, physical and emotional preparation and have read some great posts about what to take to my first appointment and a little about what to expect. 

I'd love to hear tips or tricks that you used to help you get ready for the chemo journey.  What did you do that was helpful? what did you do that thought you'd need/use but didn't?  I'm a planner ....and I'm the primary house-tender. Inside the house is my department, outside is the husbands.

Did you make meals and freeze? did you hire a cleaner? what did you do that worked well? did you keep working? understanding that each chemo journey is unique, but feel that hearing your ideas and suggestions will help me prepare and think of things that aren't currently in my thought process.

Thank you!! 
 
Boby1511
501 Posts
IlaE‍ 

I think the fatigue in the beginning was an adjustment for me. Slept a lot early on with chemo.
I'm on doxorubicin and steroids for pain and nausea. I also have low bp so contributing factor to my fatigue, which comes on quickly.
Although the fatigue does get better with each round. You get used to it I guess.
I still get the rage with the steroids so there's an adjustment for that too. But this only lasts a few days.
I never took care of the whole household as you do so I don't have any advice.
Sending you best wishes for strength and peace.
ashcon
1926 Posts
IlaE
I know this may sound odd, but I'm going to say it anyway... Congratulations for starting this part of your treatment. Chemo is known to be quite effective against TNBC so you will be officially taking the upper hand now against this insidious disease. I'm assuming you are getting the dose dense treatment every 2 weeks, yes? 

The tips and ideas for getting thru chemo are vast and varied, as I'm sure you would have seen in the discussion thread https://cancerconnection.ca/discussions/viewtopic/48/35831

I found the first day completely overwhelming, emotionally, as I didn't know what to expect. But then you get into a groove, you get to see the same people and nursing staff for each of your treatments and (hopefully) you will find connection, community, and caring in that, which is so helpful in your healing. 

From a practical perspective, plan on things like how you are going to manage losing your hair, because that will happen.  Meal prep in advance is important. But don't plan on laying around in bed all day.  Exercise, fresh air, and even housework are all things to keep you moving, though you will be moving slower and likely doing less. 
There was no way I could have worked during treatment, so I focused on my self care big time. 
Embrace your cancer centre's pharmacist. They are a valuable resource when it comes to advising you on what to expect with the meds, and ways to counter some of the side effects. 

I too, am a planner. A former project manager in fact, and I saw my cancer like a project.  My "project" included all the things a typical project would include:  a schedule of all my appointments, a log of all the meds, a log of all the questions and answers with my oncologist, a log of each pre-chemo bloodwork results, list of numbers to call. 
I found this patient toolkit from Taking Charge of Cancer author, David Palma, incredibly helpful.
https://www.qualitycancertreatment.com/toolkit.html

I still use it today, 3 years post treatment to keep track of things in my follow up appts with my oncologist and my family doctor. 

Finally, make sure you have a treat set up for yourself on the day of each chemo session. For me that was grabbing a chai latte from Starbucks on my way home. 

You are in good hands, here, and with your medical team. Go forward with your soon-to-be bald head held high and your heart open to all aspects of healing. 
Skye1717
3 Posts
Hi everyone, I'm freaking out right now!  Just got the call today and I start Chemo on Wed Oct 21st.  I've been reading articles about Chemo and Covid and want to talk to my doctor to see if my treatment can be delayed right now as I am so scared to get sick with Covid.  I know he would of already advised me and I just don't know if I can do it.  I've been emotional all day and wonder what did I do to get CANCER during a pandemic!!  Had a good cry and feel a little bit better but still uncertain.  Any advice from someone who has been doing chemo during this pandemic.

Skye
MWI
17 Posts
Hi, Skye1717
I had chemo in the pandemic, started in MAY and finished in Aug. I think I did not get any germs from the hospital. The staff there are making lots of effort to keep everyone safe. Secondly, kids were home too as schools were closed so nobody in the family got flu etc during that time. Now since kids have started school and bringing flu germs we all got sick ones, just seasonal flu. So I think if inside the house, family is okay then you should be good too. 
yes people reacts differently to chemo, in my case I did not find it that hard. No nauseavomiting headache.  Few days after chemo were little lazy but then back to normal. 
I hope things go easy for u too. 
ashcon
1926 Posts
Skye1717
I'm sorry that this news of needing chemo, especially during this pandemic, has thrown you for a loop. I remember being shocked, and even angry, when I heard I needed chemo. 
The good news is that chemo was not as bad as I thought it would be. I saw that you wrote somewhere that it "kills everything in your body" which is not 100% true. Depending on the cocktail, it is designed to target fast growing cells, like cancer cells. Unfortunately that also sometimes includes your hair, nails, skin. Some chemo works differently though, and that may not be the case for you. 

It's worth getting credible information that is applicable to YOUR situation.  Like from your doctor. 

Are you living in a an environment or situation that exposes you to an abnormally high risk of covid19 exposure? 
My daughter worked as a covid screener at a hospital in Ontario that served cancer patients. She described to me the incredible lengths they went to to protect their cancer patients. So much so that she felt the hospital was the safest place to be during this pandemic. 
It sounds like you are young and healthy and can withstand a cancer treatment plan. And yes, even young and healthy people get cancer. I was incredibly healthy before my cancer diagnosis. My neighbour is a marathon runner and he got cancer. 
This disease is insidious. Many people diagnosed have none of the known risk factors. Instead of asking "why me", I eventually learned to ask "why not me?" 

There is a good series of webinars here about cancer and covid19.  Perhaps you'd like the one about covid19 and cancer treatments (posted in June (July?) of this year). 

https://www.cancer.ca/en/support-and-services/resources/cancer-and-covid19-webinar-series/?region=on

I hope this alleviates some of your fears. I'd hate to see you risk not getting life-saving treatment for a situation that is probably quite manageable.

Let us know how you make out this week.
Survive2020
19 Posts
Skye1717‍ Good luck with your treatment. The pandemic has definitely impacted my experience with breast cancer treatment (delayed surgery, no support person allowed in the hospital, heightened fear of infection and isolation from family and friends). But, I have found the experience of chemo not as bad as feared. My oncology staff have been very compassionate. I've also chosen to undertake an integrative approach to treatment involving a naturopath and acupuncturist. Nutrition is critical to your wellbeing during this time. Good resources for cancer patients on the website for the Canadian College of Naturopathic Medicine's Integrative Cancer Centre. 
https://ccnmicc.ca/patient-resources

I have continued to work from home through treatment although some days I need to nap. And a little brain fog can get in the way of productivity. I appreciate the distraction and normalcy of work. You will discover what works for you as you go through the process. And soon you'll be sharing your own tips with others! All the best 💛

 
ashcon
1926 Posts
Survive2020
Love your username! I think that's how we're all feeling. Even those not dealing with cancer! 
That's a great little collection of resources in that link you provided. I finished my treatments 2.5 years ago and didn't really embrace any integrative care, except for really cleaning up my diet and becoming a real "foodie", but I fared pretty well. Like you, I didn't find chemo as bad as I feared.

Glad you shared this resource, and glad you were able to work from home through your treatments. It sounds like you really told your cancer who was boss, and you are not letting it derail you from living your life. 

Skye1717‍ . Good luck on Wednesday! If you can, start drinking lots of water tomorrow, and each time, 1 day before each chemo day. Hydration will be key. 
💦 ❤️😷
 
IlaE
16 Posts
Skye1717‍ 
Hi Skye - so glad that you posted. I'm a few days ahead of you - I started my first round of chemo on October 15 in Calgary at the Tom Baker Cancer Centre (TBCC). It is freaky to be walking into a hospital during Covid to start chemo. And, it's important to take it one step at a time. The protocol at the TBCC is super high. I'm asked to sanitize my hands and change my mask on entry and again on exit. I keep to myself, I don't touch things I don't need to. I take the stairs instead of the elevator. I make my husband touch things if needed, e.g. door handles. The treatment area is set up like pods - so other than the nurse that was with me and my husband, I didn't interact with anyone else or come within 6 meters of anyone. The waiting room is set up with lots of space between people. The nurse that worked with me sanitized / washed often, changing gloves, wore a face shield at times, and was fully gowned for the entire process. 
I packed way too much to take to my appt. I didn't touch my snacks, books, journal, music.  I used the blanket I took and drank my tea and listened to a bit of music. 
For me, the worst part was the uncertainty of what it would be like, how I would feel and the symptoms I would experience. Now that I'm through the first round (I'm on day 8), I have a better sense of what to expect. And, I focus on one day at a time. I rest when I needed to, I drink a lot of peppermint tea (hot water with a tea bag) and drink soda water at room temp and have ginger ale on standby if needed. Drinking lots of water, staying hydrated is super important. Nothing really tasted great, but I had toast every morning and ate small snacks when I could. I went for a walk every day, even if it was around the block. Then later I'd go again. I go a little further each day. Hubby came with me for the first few days and now I go on my own.
People will want to help. Let them. And if you're not sure what you need or how they can help - let them know that too. My oldest sister was super overwhelming, texting me every day and asking if she could bring cookies, soup, colouring - she was so desperate to help, which was so sweet and I had to tell her that I needed space. I have family spread all over Alberta and BC, and everyone was texting with "how are you feeling?" - it was too much so I asked for space and put my phone down for the better part of 3 days while I focused on me and let my husband respond and the rest of the messages could wait till I was ready. 
If there's anything else I can answer for you, share with you, please let me know. It's ok to not be ok - this is an adventure we didn't sign up for and, we're going to do our best to take it one day at a time and come through the other side. 
Ila 
Skye1717‍ 

I am glad you posted as well. As you can see by the responses, you are certainly not alone. supersu‍  talks about going through cancer during a pandemic as DIY cancer.

How did the appointment go on Wednesday?

Lianne
FeatherLou
6 Posts
Everyone who is stepping up to chemo is a superhero!
It took my hair; I got a sexy wig.
It stole my hiking boots; I marched around the block.
It put my mood on a swing; I said "push higher!"
Now there's a clot twist!  DVT for me.
I'm not sure if I can step up anymore.
Just one flight is exhausting.
Should I keep climbing?  If I fall...
I'll just be lying down over here for now.
Kims1961
2094 Posts
FeatherLou‍ Well said...the staircase that is chemo - sometimes it feels like it is 100 steps tall and other times, we can ride down the staircase on the railing.

Just know - if you are lying down over here for now - we are but an email away to help you back up or maybe just lay beside you.

Take care, Kim
FeatherLou
6 Posts
Thanks Kim.
I'm not confident that chemo is the way to go if it's going to bring my quality of life to that of a toxic clotty blob.
I'm tempted to just stop, maybe skip to the radiation.
Any ideas, wise ones?
PS  Wish there was a peer support phone line  ...   maybe I could start one!
 
Kims1961
2094 Posts
FeatherLou‍   We have so many things to consider with treatment - pros/cons - quality of life etc.  

Have you had a chance to discuss this with your oncologist?  Sometimes it helps for them to understand as a patients - what is important to our “living well” and what information is helpful to us.  I also thought that at any point, I could stop treatment if i wanted to - we have choices.

I’m not sure what area you live in - but there is a Community Service Locator - that may be able to suggest a possible peer support group in your area or via phone?

https://www.cancer.ca/en/support-and-services/support-services/find-services-in-your-area/?region=on

Keep me posted on how you’re doing.  All the best, Kim
Boby1511
501 Posts
FeatherLou‍ 

Hi there. I was referred to palliative care. I found the doc there super nice. And quick! Got me into another CT in days.
Anyways she explained all the pros and cons better than my oncologist. She told me to feel free to decline any treatment and that she would still take care of me.
My earliest fear was that if I declined treatment the docs would no longer be on my team taking care of me.
These discussions are best left with yourself and your team. They know your cancer best and your possible outcomes.
My only advice would be to find that doctor that your comfortable with, their going be with you for a long time.
My palliative doc is Kathy, a very nice lady.
Sim
3 Posts
Hey all!
I came to this forum for information on side effects as I have had a few; I am sharing mine in the hopes it helps others in the same situation.
My treatment is 4 rounds of a combo of Docetaxel & Cyclophosphamide over a 3 week cycle. I also take Filgrastim (Grastofil) injections for 5 days about 4 days after each chemo treatment.  Treatments are intravenous and I take some anti-nausea + steroids before & after treatment for a 3-day period.
So my side-effects... My 1st chemo treatment was Oct 23rd.
-I noticed my hair falling out about 12 days later. Because of the clumps falling, I chose to shave my head.  Was incredibly surprised when I went to my hair salon for the shave and my bill was only $15!  I have never paid that low a price for a hair cut/shave :)   
- I had constipation for 2 days after chemo.  I ended up taking senokot to help by day 3.
- Mouth felt dry/numb to bland taste on foods right away after treatment that lasted about 7 days.
- Felt itchy, a general feeling of being "off" or "wrong".  I felt I could smell chemicals in me.  Trouble sleeping... 
Then I took the Grastofil injections which I inject myself in belly area starting on day 4.  
- That night of the injection & for the 5 days I felt low-to-mid level pain in my knees and ankles. Finally gave up after a few hours & took Tylenol which helped.
- Itchiness by now so bad I had taken to scratching between my breasts & though I did not touch face, face was red and splotchy.  I am not sure if pimples or what but got these sores all over head and some along jawline.  My underarms also turned darker in color with a couple of breakouts under each arm. 
- By around day 3 of Grastofil, the area between breasts that I was scratching had turned black & close to bloody.  I knew this was bad so starting ice-packing it to lessen desire to scratch. Also, got some Polysporin Eczema cream and applied to face, scalp and breast area.  This totally helped calm skin down.  Still, face still has darker areas.
- thumbnails turned a bit blue

ROUND 2 of treatment went pretty much the same as the 1st. This time I was ready for the sores and itchiness so liberally used the Eczema cream in all areas I was previously affected. Sores still came but went away a little quicker and my skin did not blacken as much as before. Since I was expecting being constipated, I ate a lot of oatmeal, veggies etc to encourage my system to move. Did not have to use Senokot this time. still constipated 1 day but then ok.

In general, with the current Covid pandemic & the colder weather, I am not missing out on much with interactions and work as everyone is very restricted right now. Wearing a cap is normal (I don't like the feeling of the wig so only use caps).  I have continued working from home throughout my treatment  except for chemo days because they don't advise what time my chemo treatment will be until about 2 days prior (Abbotsford).  Since it is hard to plan & takes me some time to drive out, I just take the day off. I don't feel ill or nauseous after. The chemo room is a large circular room with nurse station in the center. We all sit in chairs with intravenous needles in arm to get the drugs.  Nurses at Abbotsford are incredible and so wonderful. I have my phone to keep busy but I also enjoy watching their interactions of joking around. I take large water bottle with me to keep hydrated. It takes about 45 minutes for 1 drug and about an hour for the 2nd. They said they can shorten the time for the 1st drug by 10 to 15 min as long as I don't get reaction to drug (which I have not).  I also get frozen gloves on hands to prevent it from going to fingers. (My thumbnails still turned a bit blue a week after the 1st treatment).

For any one who is wondering what can happen, above is my experience (age 48, breast cancer/lumpectomy). I hope the above helps you in some way.  I know I had zero idea of what all this entailed and when I got some of my side effects (the breakout/dark skin), I freaked out.  I still don't know if this skin color change is permanent so if any others have experienced this, any info you are willing to share would be most appreciated.  Take care.
 
Boby1511
501 Posts
Sim‍ 
Thanks for sharing.
I was injected with Lapelga a day after my last chemo, it's a white count booster, but only one injection.
I had bone pain, and slept for about 20 hours/day for a few days. Took Tylenol and some tramadol.

Itching! Came on mild round 5 but has come on strong now after round 6! Just on my face!
I can't stop scratching! The itching is driving me bonkers!!

I tried eating ice chips during chemo, think it helped a little with the month sores.
Hello and welcome Sim‍ 

Thank you for sharing your experience with chemo. I found when I was in chemo, I had lots of side effects that I had not been made aware of prior to starting. Most of us think about feeling nauseous and losing hair. Most of the rest came as a surprise, such as chemo acne which I experienced. It manifested all along where my hairline would be if I had hair ha, and along my jawline. Perhaps that is part of what you were describing in your post? As to the skin discolouration and itching, those are more unusual and it probably won't be a bad idea to let someone on your medical team know, if you haven't already.

I took a similar type injection to bring my white blood cell count up and I ended up in the fetal position for 4 days with extreme bone pain. There are many levels of this kind of bone discomfort which is your bones stimulating your  immune system to create white  blood cells.

Keep us posted on how you are doing as you are able.

Lianne
Sim
3 Posts
Hello Boby1511 and Lianne_Moderato,
Thank you for your kind words.  Boby: My heart goes out to you going on 6 rounds.  Personally what worked for my face rashes and itchiness was the Polysporin Eczema cream which I got from Amazon. Sharing this in the case that maybe it will help you. (My sister recommended it). Lianne: Yes, you're right.  Most of the discussions seem to be around hair loss but for me losing my hair was not as difficult/traumatic as these breakouts all over my face and head and the skin discoloration (blackish patches over my face).  In round 1 the breakouts were along hairline and jawline. In this 2nd round it was not on face but was all over my head/scalp/back of neck.  Cysts were painful. They are going away slowly but then it will be time for round 3 so will be back....  will keep you all posted. Best wishes to all and thank you again for your kind words.
Lucy77
26 Posts
I was diagnosed with invasive lobular & ductal carcinoma on Nov. 5 2019.  I went on hormone therapy for 8 months hoping my tumour would shrink. All it did was make very sick. I had every side effect possible.  I had a lumpectomy Oct. 1 but a spot of cancer still remains. I talked to my medical oncologist about chemo followed by radiation. I decided not to do chemo but start radiation on Dec. 3.      BUT my Oncotype DX test is back and the medical oncologist called this am with the results. There is a 36 % chance my cancer will reoccur.  She wants to see me in two days to discuss and make a final decision.     I am in a terrible quandary about having chemo then radiation. I am 69 years old and have had a stressful life which I think contributed to my cancer as well as some other medical factors.
After reading about chemo in this forum it makes me really wonder do I want to go through all the chemo, radiation and hormone therapy.
It will take such a long time and personally I’m tired of feeling lousy. I do not think I have any fight in me!
Thanks for reading !    Glad I found this forum just before my lumpectomy.
Lucy77‍ 

Thanks for sharing. I wanted to give you a link for more information on chemo from cancer.ca
https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/chemotherapy/?region=bc


And this link is specific to breast cancer chemo
https://www.cancer.ca/en/cancer-information/cancer-type/breast/treatment/chemotherapy/?region=bc

You may have seen some of it already but it may help you to develop some questions to ask when you are at your appointment
At the bottom of the 2nd link is a link to questions to ask as well. write down any questions on the list or your specific situation and take them with you to the appointment. Write down the answers as you get them so you can review them once you get home.  It is important to make these types of decisions with as much information as you can get.

Wishing you well for your appointment and let us know how you make out as you are able.

Lianne
Lucy77
26 Posts
THANKS
Lucy77
26 Posts
Is there anyone in this group who has refused chemo or is refusing chemo but going ahead with radiation and hormone therapy !
 
JustJan
743 Posts
Lucy77‍ I was diagnosed with TNBC in January 2019 at the age of 59. I had a lumpectomy and it was determined that it was stage 1. I was referred to the oncologist to discuss chemotherapy which was a bit of a shock to me. Thought I would be off to radiation and on with my life. I met with the oncologist and chemotherapy was offered to me as an insurance policy. After reviewing the possible side effects, the stats for recurrence, my life expectancy and my sheer terror of chemo, I did decline chemotherapy and I did complete radiation. Well fate intervened and I ended up with ovarian cancer just 2 months after I met with the oncologist and ended up doing chemo anyway. In my mind after the second diagnosis there was no discussion to be had, I just had to put my big girl panties on and do it. What I will tell you is that chemo was not nearly as bad as I had imagined. I had some difficult days but managed quite nicely through it. I won’t say it’s a walk in the park and there are definitely some side effects but it is very doable. 

I’m happy I didn’t have to go through my treatment during Covid but I’m sure the place where you are having treatment has all the protocols in place to protect you. 

Whatever you do, make sure you have enough information to make an informed decision and try not to let fear make it for you. At the end of the day you have to do what is best for you. 

 
Essjay
1536 Posts
Lucy77‍ I can understand your reluctance...you want to feel well again, and you want to live your life again, and chemo will not give you that...

Like JustJan‍ i didn’t have a choice, triple negative, under 50 at diagnosis, taking a year out of my life for treatment and recovery was worth it for a long and healthy life (I hope)...

I found this, which explains the oncotype testing and the interpretation of the results
https://www.breastcancer.org/symptoms/testing/types/oncotype_dx

From my understanding, your score puts you in the category of higher chance of recurrence, and chemotherapy would be more beneficial than not...

It’s always up to the patient, and I’m not going to try and persuade you either way.

What I can say is that chemo wasn’t as bad as I expected it to be. The side effects I was afraid of such as nausea and losing my appetite, were well managed by the medications, and my team were very attentive to every side effect I reported and did what they could to help. Losing my hair was a drag, my nails and skin were pretty rough, losing my taste for things affected my enjoyment of food, but these things were all temporary. My hair is shiny and soft now (and white and grey, which was a shock), my nails look awesome, and my skin has recovered with the help of some collagen. 

If you have any questions about chemo to help you decide ask away - plenty of folks who can answer your questions that remain after you’ve checked out the publication @lianne_moderator shared

Wishing you well whatever you decide - keep us posted. Good luck for your appointments, you have a busy week.

Essjay
Cynthia Mac
3229 Posts
Lucy77‍ , I read your post this morning. I’m in the school of not wanting to tell you what to do: treatment choices are very personal, and it’s said often that every case of cancer is different.

My Dad was diagnosed with lung cancer at age 78. He had a 50/50 chance of recurrence and chose to have chemo, even though it only reduced his chance of recurrence to 45%. I was very concerned about how Dad would react to the chemo, and a lot of that was because of the little I knew about chemo. 

But, as it turned out, things had changed since I’d heard those things, and Dad made it through his 12-week program reasonably well: he allowed himself to eat as much steak as he wanted and actually gained weight, and, when his symptoms were too severe, they made a change in his regimen to help him manage it better.

One thing I’ve learned is that hydration is important, particularly on the days around the treatment. 

Whatever you choose for you will be the right decision. I wish you well.
Lucy77
26 Posts
😊 Thank you
Lucy77‍ 

I agree with all the others, treatment is such a personal decision. Making an informed decision that is right for you is key. I'm so glad you posted to hear other people's experiences. 

I wanted to offer some information for you:
Chemotherapy for breast cancer - Canadian Cancer Society
Understanding Treatment for Breast Cancer

You may find it helpful to talk this out with one of our Information Specialists at our Cancer Information Helpline by calling 1-888-939-3333.

You know yourself best! Wishing you all the best,

Lacey
Sim
3 Posts
Hello all,

So I finished my 4 rounds of chemo!  All things considered, I feel OK.  Now I have a 3 week wait to begin radiation so... moving on :)  Then onto hormone pill for 5 years...
I wanted to update you on the dark skin and rashes. My Onco and I concluded it was from the Grastofil (not the actual chemo cocktail). She suggested Benedryl and this work for me on rounds 3 & 4.  I also cut my Grastofil to 4 injections instead of 5 days - my blood counts were normal and I had my Onco's concurrence. This for me helped reduce that bone pain from the Grastofil.  The dark skin on face has healed and no more rashes, yay!
Hopefully head hair regrows :)

Best wishes to all,
S
 
+ Reply