Living with Long Term Side Effects of Chemo

I am new to the forum. Hoping to find some others who are dealing with life changing effects from chemotherapy. Some, I know, do not have long term effects, but some of us do. In 2009, I had chemo (Taxotere, Cytoxan, Arimadex, Tamoxifen, and two others) and my life has been changed forever. I live with severe versions of fatigue, joint soreness, muscle weakness, anxiety, depression, memory impairment, cognitive problems, weight gain. I now take so many medications for the anxiety and depression that I can no longer tell the chemo side fx from the fx of those meds. My life has been altered permanently. There is an overwhelming amount of discussion about breast cancer and this seems to be an under-addressed topic. So, I am hoping to find some kindred spirits who are living with this challenge.

eevah, I hear you and feel you sister. It's not an easy road for some, myself included. I have all that you listed and then some! I try and take it all day by day... it's all I can do. You'll find some good support on this forum and the Mods listed good specific threads (topics) to check out. All the best to you.

So happy for this post. It sure helps my feelings to know I am not totally crazy.  Learning that chemo is the gift that keeps on giving. Proud to be cancer free since 2011 but living with the long term effects  are pure hell.

i was treated for dcis i 2008 and considered cured by my mo until i started having stomach issues this past fall

Turns out it was mets to bone and liver

Yeap nothing will be the same

I see now that I can't respond to individual posts, so here is a general post to thank those of you who have posted today. It is really difficult to feel so alone with these SE ever present and a medical community who seems to not acknowledge the issue of lasting or permanent effects of chemo treatments. I appreciate knowing I am not alone. As many of you have I'm sure, I have tried so many practices, therapies, treatments, supplements, medications and very little effect on these symptoms.

The one symptom I left out is the body temperature issues. Major heat surges and sweating. I was right in peri-menopause when I began treatment. Chemo shut down my ovaries right away. A Naturopathic Dr. told me that when the hormonal system is jolted like that, causing chemical menopause, the body has a very hard time recovering, and may never recover completely. This Dr. believed the sudden hormone imbalance cause by the chemo may have contributed to many of the symptoms I am having.

Have any of you had any support from your various physicians/practitioners about this? Are you finding professionals are starting to come around or not? Where are you getting support, in addition to this wonderful site? Thank you again, all.

I completely relate to the heat issues. I do have hot flashes, but I also have a general intolerance to heat. I sweat terribly, especially around my hairline and runs down my forehead. My family doctor and oncologist were slightly sympathetic and acknowledged the hormone imbalance, but they gave me nothing that helped.

I discussed the problem (and others) with my gynecologist. She prescribed a very low dose of Effexor a few months ago and it worked like a charm, also helped with anxiety and insomnia, but the effectiveness has worn off somewhat. I saw a psychiatrist today who increased the dosage and made the prescription a time-release tablet. I'm hoping that takes care of the hot flashes and heat intolerance. Unfortunately, Effexor isn't for everyone, but it may work for some others here.

I started taking Evening Primrose Oil to see if it will help with the hot flashes and night sweats. I've been taking it about 1.5 weeks and so far no change. I did notify my MO that I have added that to my vitamin regime to see if it would help. She was ok with it. Now....if only it will start working so I can get a full and decents nights sleep.

~Dee

I spoke with a MD psychiatrist today who suggested I do some sort of genetic testing to see if I was predisposed to have a severe reaction to chemotherapy. She thought it might help decide treatment. Has anyone done anything like this? Thanks

Hi eevah

I live in Scotland uk

I was diagnosedmarch 2016 with breast cancer

I had chemo & rads

Before I was diagnosed I had fibromyalgia and was able to do everything but now because of the chemo I'm going through the menopause, my memory is terrible, I'm now severely disabled and need things in my home to help me do things.

My oncologist told me that it won't get any better so I'm stuck like this for the rest of my life.

It's so frustrating having your independence just ripped away from you

I'm only 48 and I feel like I'm 80

But the good news is I had my yearly mammogram and there's no sign of cancer

I just wish I can get my life back

Hello, all! I went through chemo and radiation in 2015. I have been struggling with anxiety and depression my whole life, but it seems that it got worse after the chemo. Also, chemobrain! I'm a practicing gynecologist and I'm here to tell you that my brain just doesn't work like it used to. I even went so far as to get a neuropsychological test done (4 hour test) and it did show that I have memory issues and some attention issues. Got an MRI of my brain which showed some nonspecific changes in the microvasculature. I no longer do deliveries (of babies) or surgeries. I have limited my practice to just office gynecology. It was recommended to me - because of my cognitive issues - to no longer do deliveries or surgeries. It takes me FOREVER to chart - when i used to be able to do it more quickly. And on top of all that, I now have diabetes as well. Apparently the anastrozole that I'm on can cause an increase risk for diabetes. I'm sure it doesn't help that I have a family history of it AND I'm overweight.

So, I've decided to walk ever day for at least 45 minutes with my dog at 5 or 6:00 am. I'm doing that to be proactive because I understand the anastrozole can cause joint pains. If I get some of my extra poundage off, maybe my fasting blood sugars will go down, too.

Any advise on how to deal with the chemo brain??? I'm considering going on at least partial disability because of it -

Any suggestions are welcome!

Yes, BosumBlues, that is a good way of describing some of the cognitive problems. Attention deficits are definitely part of it for me. Anything that takes more than a couple of steps (which is everything in life) requires a flow chart, lots of notes, and much frustration. And often I just don't complete things, or I forget what I was in the middle of. We learn to adapt in so many ways, don't we. Hope you have a good week.

I have been 9 months off of chemo. I am still fatigued, have brain fog, and sometimes my words don't come out correct. The doc told me to expect a year, so we will see. Now I am having tingling in my face. Anyone else having that? I did develop neuropathy in my hands and feet during Taxol. That has gotten better, still slightly there.

I'm 11 months PFC and I'm still having body temperature issues and blood pressure issues.

Before chemo, my normal body temp was 98.6 During chemo, I would get high fevers and after my 6th and final round, I had two episodes of uncontrollable shivering. Each episode lasted 30 minutes. (Really weird). I mentioned it to my MO, but since I finished chemo at that point it wasn't discussed. Now my 'normal' body temperature ranges from 96.0 to 98.6. It's hard to tell if I have a fever because I don't know what my 'normal' is for that particular time/day. (I was post menopausal when I started chemo and had the occasional hot flash. Still have occasional hot flashes. Fortunately, they have always been mild.)

Before chemo, my blood pressure was consistently 106/66. Now it can be as low as 80/54 or as high as 125/90. Usually on the low side. But I would feel fine when it's really low or 'high'.

Anybody else with temperature issues or blood pressure issues since chemo?

For those who have mentioned Chemo brain, here are the Lumosity games that a neuropsych recommended for me:

Speed Match Overdrive, Tidal Treasurers, Playing Koi, Lost in Migration, Disillusion, Ebb & Flow, Color Match, Space Junk, Memory Lane.

I've been doing them for 6 weeks and I have not seen much of an improvement. I'm slightly better at some of the games but still not as good as the average 6 year old would be. I don't see an improvement in my ability to cope in day to day life.

I wonder if there is a chemo brain diet? Probably the same as other health matters: eat vegetables, get exercise, stay hydrated.

ProudtoSpin, I'm sorry to learn about the mets. Are you being treated by the same team as the first occurrence?

Hey guys:

I am developing night vision issues. I can't see when I drive at night well, and if its raining or snowing I'm a danger.

This started a few years ago and I have had my eyes tested and antiglare coatings were put on my glasses but this is not helping anymore.

I have looked up causes of night vision and on the Mayoclinic site (I think or WebMD) it says one risk of night vision issues is having had treatment for cancer, (ie chemo and/or rads) years before.

Has anyone had this issue? I am going to go to my doctor about it and insist on a more comprehensive eye exam.

Wallan