Log in or Register to participate in these discussions

Side Effects Query

Side Effects Query

Posted by Aries on Sep 9, 2019 10:42 pm

Hi all,

So I am just cycling through my Cycle 11 of chemo - as most of you probably know I have been very lucky with side effects. This Cycle though has affected me a little more than usual; I got what I thought were mouth sores but in the throat - sensitive to swallow but similar to a regular sore throat so still able to eat and drink OK. Now this has subsided somewhat, I am now thinking it might have been an infection - I feel like my glands are a little swollen so might have to put a call in to my Oncologist about that. I am worried it might affect Cycle 12 next week. My blood counts have been great though so I feel like my immune system is doing OK.
I am a bit worried that the chemo drugs are starting to become less effective - it might just be in my head - tumour markers are still going down and I have no other real reason to think it's not working so not sure why I am suddenly thinking this way but I am feeling paranoid or something! LOL ... WTF right?!
I noticed my pixie cut hair is getting thicker, is it normal to get new hair growth during chemo?! I am close to convincing myself that this is proof chemo is no longer as effective!

Any thoughts would be appreciated.
 

Re: Side Effects Query

Posted by Essjay on Sep 10, 2019 7:47 am

Hi Aries‍ sorry to hear things are a little rough just now. It sounds like you need a chat with your oncologist as an infection could be the reason.

its easy to read into things any answer, such as the chemo not working. Hair growth is one of those huge variables - some don’t lose their hair, others lose it and it takes months to return, some have it return during chemo, others not. Again, talk to your oncologist, but meanwhile enjoy the hair xx

Re: Side Effects Query

Posted by Cynthia Mac on Sep 10, 2019 9:04 am

Thanks for the update, Aries‍ ! 

Don’t know if you get the daily digests, but did you see the post from yesterday about the person who wanted a t-shirt that said something like, “radiation would be better if I could hear the cancer cells screaming”? Ditto for chemo, eh!

A few days ago, I talked about using affirmations. Might it be time for you to assemble a couple to help “shoo” away those negative thoughts?

Re: Side Effects Query

Posted by Runner Girl on Sep 10, 2019 9:30 am

Hi Aries‍ ,

I'm sorry you're having a hard time after round 11.  As the others have stated, pose these questions to your oncologist.  That's really the only way you're going to be satisfied with an answer.

In the meantime, think about this, my hair started to come back between round 5 and 6, but my eyebrows and eyelashes disappeared a month after round 6, just as I was starting radiation.  What the heck!!!???  Our bodies do strange and weird things sometimes.

I hope you are feeling a little less stressed today.

Runner Girl

Re: Side Effects Query

Posted by Scoot on Sep 10, 2019 10:06 am

Hi Aries‍, I’m happy to hear you’ve done so well with your treatments so far.  I can very much relate to your trepidations if the chemo is working or not, I keep having the same feelings after my 7th cycle this past Wednesday.  I’m going for a CT on October 3rd and can’t help wonder if the bone pain I’ve been experiencing is new mets or just side effects from the immunotherapy , zometa or pemexetred.  With all that has gone on, we can’t help but let our minds wander there.  I can also very much relate to your throat issues which have been my number one side effect through chemo. Right after my first treatment I experienced ongoing and intermittent extreme sore and swollen throat, swollen glands, white throat and mouth (which they first thought was oral and esophageal thrush), globus sensation (huge lump in throat), constant need to clear throat, with angry red and white patches in the throat and mouth.  I’ve been on a number of magic mouth rinses, mucusitus mouth washes, nystatin as well as the good old salt and baking soda regime.  My med oncologist finally sent me to an ENT onc this past Friday to look down my throat.  I was worried something other than side effects were going on but he confirmed what I’ve been experiencing is a very common side effect of chemo. The mucus lining of my esophagus and throat have been the chemos target, which can be very common.  He also felt the acid from Gerd has caused much of my esophageal and sore throat issues, even though I don’t experience heartburn and the oncologist already has me on  a PP1 blocker just for that.  Even with this going on, they have and will not stop my maintenance treatments andlike you, I’m still able to eat and tolerate it.  Wishing you all the best!!!!!!!!!!!!!  Hope the throat issues are just a one time thing for you.

Re: Side Effects Query

Posted by Aries on Sep 10, 2019 9:00 pm

Essjay‍; Cynthia Mac‍; Runner Girl‍ and Scoot‍ 

Hi all, thank you so much for all your responses - you have made me feel so much better about everything!! I feel truly blessed to have such a wonderful supportive community to reach out too 🧡🧡🧡
I went and treated myself to some fancy natural hair product today that my hairdresser used!

My throat is feeling quite a lot better today but I have a little sore spot on my tongue - have the Magic Mouthwash in my fridge so will swish with that later.

Can't recall if I mentioned it before but I returned to work part time - 3 days every 2 weeks (non chemo week) and so have something good to focus on which is where I was at today otherwise I would have responded sooner 😊

I will put a call into my Oncologist just so she is aware of my issues before my next treatment but I feel much better from your feedback. Scoot, your input on all the throat stuff was good to know - I have been getting some crazy acid reflux - sometimes it feels like a painful bubble stuck in my chest so that has probably contributed to the throat soreness too. Thankfully I don't get it too often and 1/2 tsp of baking soda in a small portion of warm water seems to help clear it.

I hope you are all doing well - big hugs to you 🤗

Re: Side Effects Query

Posted by Kims1961 on Sep 11, 2019 12:08 am

Aries‍   Ah....the physical and emotional challenges of cancer.  I can so relate.  I had terrible mouth sores/ thrush/ sore throats - a clicking jaw...and then there was the terrible taste in my mouth for foods! I took these terrible side effects as a sign that the chemo was working and my body was trying hard to return to "normal".

I found that as chemo went on, some side effects got worse.  I mentioned to my oncologist and they adjusted my dosage, which made a big difference.  I definitely echo the advice to talk to your oncologist about your side effects and worries. 

Glad to hear that you are starting to feel a little better.Take care, Kim

Re: Side Effects Query - Update

Posted by Aries on Sep 17, 2019 5:33 pm

Update: I had my blood work on Sunday (day before chemo yesterday) and they had my tumour markers on this one too - just 2 weeks from my last one (usually done once every month - 2 cycles) and my CEA had gone up by less that 2 points - 13.8 to 15.5 so was a little concerned about that but the plus side, my CA19-9 for my liver tumours had gone down from 228 to 215 which I thought was good as my liver is the worst area. I spoke to my Oncology nurse yesterday and there hadn't been any change in dosage. I will be seeing my Oncologist on Sept 26th so will discuss this with her. All my blood count was good though so my immune system seems to be staying the course thankfully. I will see what kind of side effects I get this cycle - can't believe I have had 12 already!
I did leave a message last week with my Oncologist's secretary and she said I will get a call back about any concerns if my doctor has and I didn't get one so I think that helped ease my mind more too after all your messages.

My parents are here for a visit from Europe and so they got to come and sit with my and experience the "chemo" session. 

Anyway, just thought I would give a little update about that as you were all so helpful it setting my mind at rest :)

Hope you are all doing well!

 

Re: Side Effects Query

Posted by Brighty on Sep 17, 2019 5:45 pm

Thanks for updating us, Aries‍ !!   Please keep us posted!!!!!!!!!!!!!!!!!!I hope you are enjoying your time with your parents!!!!!!!!!!!!!!!!!!!!!!

Re: Side Effects Query

Posted by Lianne_adminCCS on Sep 17, 2019 5:46 pm

Aries‍ 
Thank you for the update. I won't pretend to understand all your numbers but going down on the CA19-9 is good news for sure.
How nice that you are getting family time in from across the ocean and also that they grt to have a bit of an understanding of what your routine is like these days.

Keep us posted with your Sept 26th appointment.

Lianne

Re: Side Effects Query

Posted by Michelle_MB on Sep 18, 2019 3:35 pm

Aries‍, the small change could be within the measurement error range. Congratulations on finishing 12 cycles of chemo!

Re: Side Effects Query

Posted by Aries on Sep 24, 2019 7:20 pm

Michelle_MB‍ thanks for that suggestion - I hadn't even thought about the possibility that it could be a measurement error!

Update - cycle 12 is going very well. I have had no real side effects other than the usual mild constipation. No mouth sores this time round! Yay!! Maybe having my parents here - that positive time, love and support was the key! My parents left today and while it was a bit sad to see them go, I am happy to have my space back! haha ... It was a great visit; we did lots of fun days out. I felt pretty great the whole time - really can't complain; feel so lucky!

I am looking forward to seeing my Oncologist on Thursday, wondering if there will be any updates. I have made some notes on things I want to ask. Can't believe October is just around the corner - but Oct 2nd is my next CT scan and fingers are crossed there will be some significant and positive changes in my tumours. 12 cycles of chemo over 5 months ... there must be some changes of note by now!!

Hope you are all doing well 💛

Re: Side Effects Query

Posted by Brighty on Sep 24, 2019 7:26 pm

Aries‍  so glad you enjoyed your time with your parents!!!!! Please post when you get the results of your next CT scan!!!!!!!!!!!!!!!!!!!!!!       (post before that anyways, we miss you!)

Re: Side Effects Query

Posted by Aries on Sep 24, 2019 7:35 pm

Sorry Brighty‍ - I have been somewhat absent of late! I will definitely post an update of my scan results. 

 

Re: Side Effects Query

Posted by Scoot on Sep 25, 2019 10:02 am

Hi Aries‍.  Happy to hear you are feeling well and the mouth, throat issues have passed and you had a good time with your parents!  Best wishes for your CT on Oct 2nd after 12 treatments.  My CT is the next day, on Oct 3rd after 8 treatments...Let’s try to keep only positive thoughts!  I don’t know about you, but it’s difficult after everything we’ve been through.  I don’t want to have to stop these treatments even though they knock the @#$& out of me.  Best wishes!

Re: Side Effects Query

Posted by Cynthia Mac on Sep 25, 2019 10:26 am

Aries‍ , your positivity is such a breath of fresh air! I’m so glad you had a great visit with your folks.

We (Dad and I) got good news from his CT scan last week. I posted about it at https://cancerconnection.ca/discussions/viewtopic/68/63671?post_id=304177#p304177. I hope your news is as good, or even better.

Scoot‍ , from what I’ve read, your feelings about treatments coming to an end are quite normal. You may wish to check out some other discussions - I think there’s one in The Emotional Roller Coaster - for some strategies to deal with those feelings. And, I think ashcon‍ or Lianne_adminCCS‍ know of some other resources that might help you, too.

 

Re: Side Effects Query

Posted by Scoot on Sep 25, 2019 1:33 pm

Hi Cynthia Mac‍.  Don’t think you quite understand the reasons I fear treatments coming to an end.  My treatments do not mean I have completed a required number of cycles towards a cure.  I will be on maintenance chemo every 21 days for the rest of my life, however long that may be.  When treatments end that will mean they are no longer working for me and the cancer is progressing.  There will be no other options other than clinical trials.  I hope to stay on maintenance chemo as long as possible, as it means the treatment is keeping everything at bay.  

Re: Side Effects Query

Posted by Cynthia Mac on Sep 25, 2019 3:52 pm

Ah. Sorry I misunderstood.  My Dad is on the same regimen as you, now, too. Sigh.

Re: Side Effects Query

Posted by Aries on Sep 25, 2019 9:43 pm

Scoot‍ - Thanks Scoot! Good luck with your scan too ... keep me posted! Being positive is the name of game - believe to achieve and all that!

Cynthia Mac‍ - great news about your dad!!
Positivity is all I have right now ... I have to believe I will beat this or else what's the point? And maybe because I have been lucky with treatment so far and haven't suffered; I believe I will beat it even though I have a major mountain to climb to do so. I can still picture a future and look forward without Cancer blurring the view; sure I sometimes think when planning just a minor future date, whether I will be around for it but at the end of the day I refuse to allow this disease to take anything from me and who I am as a person. I am scared and devastated this has happened to me but it is what it is and I can't change it now so all I can do is go through treatment and fight like heck crossing all my fingers and toes! haha

Re: Side Effects Query

Posted by Scoot on Sep 25, 2019 10:23 pm

Aries‍, thanks for your positivity!  You are an inspiration to me.

Re: Side Effects Query

Posted by Cynthia Mac on Sep 25, 2019 11:16 pm

Scoot‍ , sorry for my brief response earlier - I was on my phone, and even with my Swype app, phones are slow.

I guess you, Aries‍ , and my Dad are all in Stage 4 now. Let’s hope those meds keep doing their thing.

Re: Side Effects Query

Posted by Aries on Sep 26, 2019 11:16 pm

Cynthia Mac‍ - yes, unfortunately, I am stage 4. But I don't let this get to me ... it is what it is!

I met with my Oncologist today; she is going to add the 3rd drug, Bevacizumab, to my treatment plan. This one was risky due to even slight bleeding when using the bathroom ... to not get too graphic! As I haven't noticed any for the past couple of Cycles, we are going to give it a go. This drug stops or helps prevent the cancer cells from forming blood vessels to spread the disease. I was using a high dose (4000 IU) of Vitamin D3 to hopefully to the same thing (based on a phase 3 clinical trial I read about in the States).
She also checked my breathing, glands/lymph nodes, and liver and was satisfied there were no issues.
We are both looking forward to my scan results. I really hope there will be some significant changes since my last one on July 29th.
 

Re: Side Effects Query

Posted by Michelle_MB on Sep 29, 2019 3:26 am

Hi Aries,

My husband used Bevacizumab during the 2-6 rounds of chemo. They stopped using it after a CT scan showed two pulmonary embolisms. The finding was incidental because he had no symptom. I don't want to scare you because people usually don't have the same side effect from the same medication.

This medication is the first line drug for colorectal cancer. Its benefit must overweigh its side effects. I just want you to be careful. 

Good luck with your scan results.

Michelle

Re: Side Effects Query

Posted by Aries on Sep 29, 2019 2:32 pm

Hi Michelle_MB‍ - thanks for the heads up. I will definitely be paying close attention to any signs of bleeding. I am a bit worried about going on this drug as I feel like it sounds riskier than the heavy dose chemo I have!
 

Re: Side Effects Query

Posted by Lacey_adminCCS on Sep 30, 2019 10:50 am

Aries‍ 

Good to hear from you. Fingers and toes crossed with you 😊