New here and looking to see if I’m normal

thelazyaranch4

Hi, I am 52 and on April 25th I was diagnosed with triple negative left invasive ductal carcinoma grade 2. Currently receiving chemotherapy taxol / carbo weekly ( round 7 of 12 tomorrow) and keytruda every three weeks to continue for a year.

Having side effects of EXTREAME fatigue, just showering does me in for the day, weakness, skin tingling all over and not feeling like myself at all. I receive treatments Wednesday and for the following four to five days I’m basically down and out on the couch except for ladies room breaks!

I’m just looking for a little support knowing if my side effects are normal. I’m not able to do much at all of what my normal life was like before chemo started.

thank you!!

jessiesmom1

I was about 52 when I was diagnosed with triple negative breast cancer- Stage 2a. I had a right mastectomy which was followed by 4 rounds of Adriamycin/Cyroxan and 12 rounds of Taxotere. I remember all too clearly taking a shower and getting dressed again and saying, "that's it for me for today." I have never experienced such fatigue in my entire life. I had a number of other side effects, too. There were definitely days where I said "I just can't do this anymore." But I finished every last bit of the recommended treatment. What I CAN tell you is that all happened 12 years ago. I have never had a recurrence of disease. I saw both my children graduate from college and my daughter will be getting married next year. There IS life after cancer and yes, you ARE normal.

IRENE

thelazyaranch4

Thank you and congrats on your 12 years and many more to come!!!!! I haven’t had surgery yet, lumpectomy after chemo is what I am told. I just hope I can make it through chemo! Every day seems harder and harder and I’m just half way. I’m also taking mirtazapine for anxiety, sleep and appetite and I’m sure that isn’t helping with the fatigue!! I just feel like a zombie all day long!!! This is so different than what used to be normal for me!!

Karen

anngie

Hello Karen and Irene,

I also was diagnosed with triple negative breast cancer on my left breast that was caught early (under 2 cm area) I did the BCRA test (which cost me around $800) to see if I had any heritary impacts - all came back negative which was good news to hear.

I did 12 sessions of chemo for 4 months. Chemo was taxal and carbo as I didn't want to take the regular chemo given Adriamycin due to its impacts on the cardiovascular system. Taxal was given every session and a taxal and carbo mix was given every 3rd session. All in all, I did pretty well. The later part of the series I became more fatigued but I pushed myself to jog 3.5km each morning and walked most evenings for 1/2hr to 1hr with a friend. I am a strong believer in exercise to boost the immune system and I know I felt better for the exercise even though near the end I had to do more walking and going upstairs and hills made me feel a bit out of breath. Exercise also helps to clear the head and reduce the anxiety. Some nights I would walk a short trail that went in a circle and felt like a zombie but it felt better to be a walking, relaxing zombie than a tense zombie lying on the bed trying to rest when no rest would come due to too much mental stimulation and worry.

Worst side affects were bleeding and stuffy nose, some tingling in my feet - especially in the morning when I got up. My feet didn't feel numb however. Also some sensitivity in my thumbs and very end of my fingers but no numbness. My recommendation would be to do as much exercise daily as you can muster ie: walking, biking, yoga etc. It will help, even if it feels like a real slog to begin! I avoided any additional medication as I didn't want further complications.

Food started to taste very metallic and my stomach was very gassy. I found eating healthy food in smaller amounts and more frequently was best for reduced side affects. Lots of water, I avoided caffeine as I am challenged to drink 8 glasses of water a day and new that caffeine diminishes the benefits. I resorted to hot water with lemon and a bit of honey and herbal teas. Fruit became my treat - especially raspberries, strawberries and cantalope.

I am now onto surgery next. While I was aiming for a lumpectomy now I am not so sure. I have small breasts to begin with and after a consult with the radiology specialist, the long term impacts and related side affects don't seem worth the effort. If my sentinel nodes are clear and I do full breast removal I can avoid radiation - which seems like another onslaught to my system that I would like to avoid if possible. Lumpectomy means I have to do radiation and there could be an issue with enough healthy margins to do a complete job if I go this route.

Given that I have triple negative cancer, I guess I am leaning to full breast removal to be on the safe side even though that was not my original plan. I was hoping to seek the least invasive route - now its not so clear.

Any thoughts on this Jessie??

Ann

anngie

Hi again Karen and Irene,

One foot note, I am 62 years of age so a bit older on the cancer stage...

A

thelazyaranch4

Ann, you are a true Warrior!! I’ve been trying exercising in small doses, jogging has never been my thing but we have a large country yard and I always enjoy walking it when I’m up to it. At my recent appointment I was told if I don’t feel I am able to go forward with chemo I will be sent to the surgeon. I am going to give it my all to try to get to the end without giving up. I’m not a quitter, except for cigarettes, I quit those three weeks ago!! I too have small breasts so I am hoping for a lumpectomy but won’t know until after meeting with the surgeon August 11th. At this point I’m willing to do anything just to be healthy!! I have also just learned my first grandchild is expected in the beginning of the year!!!! So much joy to look forward too:)

anngie

Hi Karen,

Thanks for the compliment - but we all do the best we can!

I forgot to mention that I also received gastrofil shots for day 2,3 and 4 after each chemo tx. This was done because after my first few chemo txs my white blood cell counts took a deep nose dive. So the gastrofil worked to keep them up to more acceptable levels for chemo. I am wondering if you get these too as I would expect they would help with fatigue. I also think that if you can avoid the anxiety, nausea med and replace it with something more natural that it might also help with fatigue. I know some people take CBD products for relaxation and appetite issues with a fair bit of success. You are also taking  keytruda  which I understand is not a chemo product but more of an immune boosting agent. This product is not approved for use in Canada so maybe you are taking that instead of gastrofil?

At any rate, my side affects seem to have been less than yours so may be worth looking at the CBD and more exercise if possible. I appreciate that quitting smoking only three weeks ago will also be a challenge but good for you for forging in that healthy direction!

Here are the stats I got from the radiology oncologist

Chances of recurrence of cancer to the breast

Full breast removal - 1-2%

Lumpectomy and radiation - 7%

Lumpectomy and no radiation - 20%

If the sentinel nodes are clear, radiation isn't needed for full breast removal - that is my hope!

I am also concerned about having big enough margins (due to a small breast) to get all the cancer via lumpectomy

and still have a reasonable breast and no residual cancer that requires further intervention.

How exciting about a first grandchild! You are right - so much to be healthy for and to look forward to!

Keep up the good work!

thelazyaranch4

Hi Angie,

I do not get the gastrofil shots. They gave me prednisone 5mg once a day for the 3 days after treatment. I try not to take it if i truly don’t need to. My blood work all comes back normal but my white and red blood cells are on the low end along with platelets. As for the anxiety meds, my gp upped my dose ( it’s less sedation at higher doses) so hopefully that will help a little. The ketruda is to boost my immune system to attack the cancer cells. It doesn’t help with the fatigue unfortunately. Thank you for the stats!! I probably won’t know much about my plan until I see the surgeon. In the beginning they did say that I would require radiation. I too am worried about having clear margins with such small boobs!! I’ll do what ever it takes to be heathy though!!!

anngie

Hi Karen,

If I were you, I'd get some clarity around radiation treatments, protocol and radiation impacts to the body and the breast. I wasn't clear about this from the start which is why I was aiming for a lumpectomy. In fact, I didn't meet with the radiology oncologist until the end of my Chemo and just prior to next step consult with the surgeon.

I would have appreciated more info up front so I could think more seriously about full breast removal versus a lumpectomy.

Just my two cents worth! I know we are all in different places...

thelazyaranch4

Hi Anngie,

I agree! I will ask for info for radiology at my next visit. I’m not very knowledgeable on the process of all of this so I am just going along with what I am told to do petty much. I was told radiation after surgery, each day for 4 weeks. I have a good friend who had radiation but didn’t need chemo.

anngie

Hi Karen,

All the best with your journey. I tend to ask a lot of questions - may not always be a good thing 😅

I have heard that chemo is more challenging than radiation. All the same I don't like hearing about all the impacts of radiation as they seem pretty close to the heart and lungs!

Let me know how you do. I appreciate the opportunity to share our experiences.

Best wishes,

Ann