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All TopicsForum: Chemotherapy - Before, During, and After → Topic: Living with Long Term Side Effects of Chemo

Topic: Living with Long Term Side Effects of Chemo

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Aug 22, 2017 11:38AM

eevah wrote:

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.

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Aug 22, 2017 12:00PM Moderators wrote:

Hi eevah, and welcome to Breastcancer.org!

Thank you for posting. You're sure to find many here who are also experiencing long-term effects of breast cancer and its treatment. This is a great space to share your experiences, get advice and tips, and receive inspiration to help counter these effects.

While you wait for the ever-helpful support from others here, we encourage you to check out the following pages from the main Breastcancer.org site, which offers great information on tips to help manage these effects, and how to talk to your doctors about what you're experiencing:

There are also excellent Research News articles on treatment side effects which offer new information on different ways these side effects are being studied and remedied.

In addition, you may want to consider the Complementary and Holistic Treatment section, which offers options for non-medicinal options to alleviate many of these effects.

We hope this helps and we look forward to hearing more from you soon!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 22, 2017 12:24PM Jackster51 wrote:

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.

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Aug 22, 2017 01:08PM tangandchris wrote:

I can totally relate. My fatigue is still a problem, I'm beginning to think I will never have the energy I once had. My joints are in bad shape too. Knees need replacement, and I have arthritis in my feet, back and hip. I was 39 at dx and just think treatment has aged me greatly.

I often wonder if something is wrong with me because I'm still struggling. It has improved some, but still not normal. Also I'm fairly confident I have neuropathy. Oh and yes cognitive problems too. Still get mixed up with words and so much worse if I'm tired.

Anyway I don't know what the answer is. Just good to know where are not alone.

My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Surgery 11/27/2013 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 2/13/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 22, 2017 01:26PM - edited Aug 22, 2017 01:28PM by Mimidi

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.

Dx 11/11/2010, IDC, 4cm, Stage IIIA, Grade 3, 4/18 nodes, ER+/PR+, HER2- Surgery 11/17/2010 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/13/2011 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 7/6/2011 Breast, Lymph nodes Hormonal Therapy 8/1/2011 Femara (letrozole)
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Aug 22, 2017 01:57PM LiDu wrote:

It's great to see this post and the responses because sometimes I feel very alone in this. Nine months since the end of herceptin treatment (and previous chemo, bilateral mastectomy and radiation), and everyone tells me how great I look. I wish I felt that great. Like so many others have mentioned, I have cognitive problems, anxiety, and depression as well as insomnia and fatigue. The only physical side effects that are obvious include continued low white blood cell count, weakness, and severe hot flashes.

I've been on Effexor for three months and it was wonderful at first, but has become less effective and I'm bruising easily. Next step: Psych eval.

Thanks for sharing everyone! If you have any advice, please share.

Dx 4/2015, Right breast, 2.8cm, HER2+, BRCA-; Chemo: carboplatin, Taxotere, Herceptin, and Perjeta; Surgery 10/2015, bilateral mastectomy, lymph node removal; Targeted Therapy: Herceptin 11/2015; Radiation 12/2015
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Aug 22, 2017 02:08PM proudtospin wrote:

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

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 22, 2017 03:32PM - edited Aug 22, 2017 03:54PM by eevah

This Post was deleted by eevah.
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Aug 22, 2017 04:09PM eevah wrote:

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.

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Aug 23, 2017 11:10AM Mimidi wrote:

Hello to everyone..Hoping that you are muddling through today.  It is good to know that I am not going through these long term after effects by myself.

Dx 11/11/2010, IDC, 4cm, Stage IIIA, Grade 3, 4/18 nodes, ER+/PR+, HER2- Surgery 11/17/2010 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/13/2011 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 7/6/2011 Breast, Lymph nodes Hormonal Therapy 8/1/2011 Femara (letrozole)
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Aug 23, 2017 12:07PM LiDu wrote:

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.

Dx 4/2015, Right breast, 2.8cm, HER2+, BRCA-; Chemo: carboplatin, Taxotere, Herceptin, and Perjeta; Surgery 10/2015, bilateral mastectomy, lymph node removal; Targeted Therapy: Herceptin 11/2015; Radiation 12/2015
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Aug 23, 2017 02:09PM eevah wrote:

Effexor helped me greatly for years with depression, but after chemo it gave me terrible anxiety. It's interesting how things seemed to just turn upside down in my brain after chemo. I may try a low dose of Effexor again for the heat and sweating issues. Thank you for reminding me about that.

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Aug 23, 2017 02:22PM dcdrogers wrote:

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.


Dx 11/15/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER-/PR-, HER2+ (FISH) Targeted Therapy 12/15/2016 Herceptin (trastuzumab) Targeted Therapy 12/15/2016 Herceptin (trastuzumab) Chemotherapy 12/15/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/15/2016 Perjeta (pertuzumab) Surgery 5/4/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 6/14/2017 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 23, 2017 06:04PM msphil wrote:

yes sweetie I too had all except depression still dealing with side effects after becoming a 23 yr Survivor But so glad to still be Here so I also take it day by day and think n pray for those who didn't make it and like would have loved to Feel the side effects so that is what keeps me pushing thru. Praise God.I'm still here. God Bless Us All. msphil idc stage 2 0\3 nodes Lmast reconstruction But expander was rejected by my body temp 103 removed chemo before 3 months and after surgery 3months I was 42 at time which was young back then planning Our 2nd wedding did get married between chemo and dad's 7wks rads chemo ariamycin cytoxin 5 yrs on tamoxifen..

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Aug 31, 2017 06:23PM eevah wrote:

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 :)

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Sep 1, 2017 11:14AM eevah wrote:

Well, I don't know much about the test yet. I will find out more. I so understand the hesitation to resist treatment after feeling this way for so long. From what I understand the test can be used to help decide treatment for psychological issues, but my doctor thought it might shed some light on the sensitivity to chemotherapy. I will report when I know more. xo

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Sep 3, 2017 01:09PM Marine20 wrote:

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

Dx 3/21/2016, IDC, Right, Stage IIIA, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Sep 11, 2017 09:04PM Reina_de_los_changos wrote:

Hello Everyone,

I'm glad to hear I'm not crazy! Chemo ended in March (AC+T), and I haven't been able to get my body back. I used to hike, and exercise regularly, but my body can't take it anymore. My legs ache so bad-- really painful cramps all up and down. The bottoms of my feet hurt too. I was having joint pain, but I've been taking glucosamine for a month now, and my joints feel better now. I also have the sweats that was mentioned, but I'm pretty sure that's the menopause that was starting when chemo started.

Like what I've heard, I take it day by day. I work full time teaching second grade, and that can wear me out sometimes. But I'm grateful that I can work, and enjoy what I do. Also, I don't feel depressed at all. I do have some anxious moments, and can get stressed, but Itry to remain grateful. I figure it could be worse.

When I spoke with my oncologist last month about this pain, she suggested a couple of things. I just messaged her to tell her I'm still in pain. So we'll see what she says.

Hang in there! I think we're all here for a reason...

Dx 8/16/2016, IDC, Left, 2cm, Stage IIB, Grade 3, 1/16 nodes, ER-/PR-, HER2- Surgery 9/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 10/13/2016 AC + T (Taxol)
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Sep 19, 2017 09:07AM dopbell wrote:

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!

Stage 2B breast cancer (March, 2015); chemo and radiation (2015) Did Tamoxifen 2015 - 2017. Now on anastrozole
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Sep 19, 2017 09:59AM eevah wrote:

Hi dopbell. I am so sorry you are dealing with all of this. I know there are many of us who have had to alter our lives drastically to adjust to these difficult effects of chemo. It is really challenging and I know I have had to go through quite a grief process about losing my previous capacity. I didn't have any tests done, as it was very obvious I had cognitive deficits. It's great that you can get yourself out to walk every day. Movement really helps, though it is very difficult to get up and move, feeling the way I do. But, I do think moving is one of the best tools for managing the problems. It helps my joint pain and my mood, when I can do it. I don't have many other suggestions. I have tried everything I can think of to bring back my cognitive capacity (supplements, medications, brain exercises, etc) and it is really just gone. But, it is not long since your treatments so time may still help a great deal. I know many people have improvements in the first couple of years. And, talking to others who are dealing with the same has helped me as well. It is not popular, or even accepted, to talk about negative effects of these drugs. It is important to talk about it. So, thank you for sharing some of your story. And don't hesitate to message me if you want to chat further.

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Sep 19, 2017 10:13AM eevah wrote:

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.

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Sep 19, 2017 11:45PM - edited Sep 19, 2017 11:48PM by kandispaz82

I've been free of cancer for over a year, yet the risidual effects just won't give up. My hair has not grown back to normal...head, eyebrows, eyelashes, legs...you name it. I'm in constant pain. My joints feel weak. Still do not have the stamina I once had. Always have this constant struggle with brain fog and memory. I'm 35. Had stage 1 IDC. HER2 positive...estrogen and progesterone positive. BRCA1 negative. I just want to find myself again amd not feel so old when I'm still so young...#fuckcancer!!!! (Please excuse the language, but I'm just so lost and frustrated)....I just want to be "me" again...whatever that is....

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Sep 25, 2017 06:47PM SurvivingToday wrote:

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.

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Sep 25, 2017 07:48PM eevah wrote:

Yes, SurvivingToday, definitely give it a bit more time. Most people I've known do have a lessening of side effects eventually. But, there are a number of us who have continuing symptoms. I do hope your symptoms subside in the short term. I did not have neuropathy but know many do. Best of luck to you.

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Jan 12, 2018 06:01PM BellasMomToo wrote:

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?

Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/1/2016 Herceptin (trastuzumab) Chemotherapy 11/1/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
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Jan 12, 2018 06:55PM eevah wrote:

Hi BellasMomToo. Yes, I have absolutely had the temperature (both perceived and actual) issues. My temp was always normal pre chemo. Since chemo, it varies from 96.5 to 97.5. Never 98.6 unless I feel feverish. And, like you, I wonder if I may be feverish when my temp actual reads normal. And I also have had persistent hot and cold flashes ever since chemo. The intensity varies, but they persist. Apparently there is a temperature regulator in the body that can be damaged by chemo. That information came from my psychiatrist. My Dx came when I was in peri-menopause, which is a sensitive time for the hormonal system, and can result in these kinds of problems. That has been an explanation by various docs, for my lasting side effects. I'm glad you checked in. Thanks.

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Jan 14, 2018 03:01PM aterry wrote:

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?

Dx 10/13/2016, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2- Surgery 4/18/2017 Radiation Therapy 5/23/2017 Chemotherapy AC + T (Taxol)
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Jan 16, 2018 10:53AM eevah wrote:


I have also tried the Lumosity games. I think it is difficult to notice improvement over the short term but I hope it will help eventually. Brain HQ is another company that has great brain games. I just reread through these posts, and I want to thank you all so much for this discussion. Somehow, it really helps to know I am not alone. xxoo

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Jan 16, 2018 06:30PM wallan wrote:

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.


Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/31/2004 AC + T (Taxol) Radiation Therapy 11/30/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 16, 2018 07:00PM eevah wrote:

I don't know if my vision problems are chemo related, but I suspect that is at least partially so. I have terrible night blindness, and my day vision has worsened. How much is aging is hard to say for sure. Chemo affects nearly everything. It does not seem to discriminate.

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