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Let's Discuss...managing symptoms and side effects



Managing Symptoms and Side Effects

Some cancers cause symptoms, which are changes in your body. Treatments for cancer can also cause unwanted symptoms, or side effects. Examples of symptoms and side effects include nausea, vomiting, diarrhea and fatigue. They have different causes and can vary in severity and how long they last.

Everyone experiences symptoms and side effects differently. Although they can affect your well-being and quality of life, many can be treated or managed.

Discussion Questions:
  • Did you experience side effects from your cancer or cancer treatment?
  • What helped you manage?
51 Replies
I experienced nausea, constipation, mental fogginest and fatigue during my chemo. I took Restorolax starting 2 days before each treatment, then daily until my BM started. I took the antiemetics they prescribed right before and for 2 days after each treatment, plus used cannabis under the form of cookies with great results to control my nausea.
I stayed as active as I could also, mostly by going for walks.
My cancer doesn't really give me definite symptoms (ovarian), but I do still feel tired physically and mentally.

Hope this will help someone!


CherryPie
2 Posts
Hi everyone,

I had a very large and deep basal cell infiltrative tumor. The surgical scar across my right cheek is three inches long. The major post-op symptoms of that surgery were extreme fatigue,pain from the surgery and numbness. The best thing was to sleep a lot to let things recover and take really good care of the wound. My nerves are still recovering 6 months later,but the feeling of numbness has lifted. Deep stretching really helps too, and keeps the nerves muscles limber all throughout the body. The most important thing was Vaseline on the cut! Also have been taking biotin,vitamins e and d,and lots of fish oil caps. My right eyebrow finally grew back! Small victories are the best ones:)
good luck to everyone going through surgery and or chemo and radiation. I still have a few surgeries to go this year.
Clarke
36 Posts
I am pretty well past symptoms. Except that I need a nap almost every afternoon and a walk of 800 steps is exhausting 18 mo. After my surgery.
Kuching
390 Posts
I have never had any symptoms from the cancer itself. So I sometimes find myself in the slightly ridiculous situation of trying to convince people that I actually do have stage 4 lung cancer.

I have been on targeted therapy from the start (Oct. 2019) and have had some fairly mild side effects. Diarrhea, skin rash, leg cramps, split fingernails, and hairdo from Hell are the main ones. Imodium for diarrhea, hydrocortisone cream for rash, lots of water for cramps.

i have found both Cancerconnection and the Tagrisso Facebook page extremely helpful, in seeing what side effects to expect, and how to treat them.
ACH2015
2306 Posts

Did you experience side effects from your cancer?

Yes. The tumor pain itself became worse as it grew prior to chemo / surgery / radiation.

What helped you manage?

Pain Killers and nerve blockers, Hydromorphone, Morphine, Gabapentin and Pregabalin mostly. And I'd like to say they were used at the lowest dose toward gaining optimum effectiveness. Not waiting for the pain to become a 10 out of 10 reduces your dosage considerably.

Did you experience side effects from your cancer treatment?

Yes - Surgery (x4) left me with lymph edema in my left leg, pelvis and groin. This required massage, and compression garments to help control and this is a chronic condition after removal of all the affected lymph nodes.

Chemotherapy let me with chemo brain / fatigue that still affects me today. Bone pain was extreme as the treatments progressed. I would have to crawl up the stairs, and basically just had to ride out the aching that never ended. But it finally did. Same as the fatigue. Just had to ride it out, and when I had the energy - I would do what I could and then not feel so useless when I would sleep all day - and night. Acceptance is the best medicine for this.

Radiation left me with a lifetime limit of radiation to the main surgical area. Difficulty in healing is and will always be an issue in the left inguinal (groin) area. The skin is different in appearance and feel.

Immunotherapy left me with increased issues with my psoriasis and colon. I needed massive doses of long term steroids to reduce the inflammation the drugs created as a side effect. Rashes mixed with psoriasis are difficult to control.

The combined treatments described have left lasting affects, and I did considerable research prior to agreeing to anything. Although I sought out lesser and other measures - they were not applicable to my situation given the Stage IV Unknown Primary Adenocarcinoma diagnosis- therefore I had to grit my teeth and submit to some pretty invasive surgeries and other treatments. Foe me, understanding what my situation was and is - gives me the best means of coping with the never ending ups and downs of the end results. I am alive and beat some pretty bad odds - so the cup is half full much of the time. Still dealing with the mental fall out, and that required medication, therapy, and acceptance. All very important components of the mental side of healing.

ACH2015

Elsie13
1545 Posts
When I had my hysterectomy, for ovarian cancer, I thought I would be outside taking long walks after about 3 weeks. But I was 60 years old, and the actual situation at the three week mark was, I could walk around the supermarket holding a shopping cart, with my husband close by. I occasionally got a bit light headed.

With my 6 chemo sessions, I didn't have much nausea. I was given pills for nausea, and the idea is that you take one as soon as you have the slightest symptoms. That worked our well. I always had a steroid pre-med around 30 minutes before the chemo. So once the chemo got started, I had the most annoying restless legs. The nurse said that can happen with the steroids. I had to get out of the chair - and if you know any ballet, I had to do demi plie, stretch, rise, lower, because I had this creeping sensation as if the thigh muscles were falling off my bones.

For chemo 4, 5 and 6, I had extreme tiredness for a few days after the treatment, and day 5 was always the worst for some reason.

I had 25 radiation treatments. So I never had any 'sunburn' or skin problems. The thing is, you have to go every day, so that's very tiring.

My hysterectomy was on November 2016. My radiation finished in late June 2017. I started back at the gym, doing zumba, at the very end of August that year, and two weeks later I was diagnosed with lymphedema in my legs. So I have to wear compression stockings, and I had to learn compression bandaging. Because of the pandemic, I'm exercising a bit less and eating more. My left leg is in good shape, but my right leg has gotten a bit bigger.
Whitelilies
2343 Posts
Lacey_Moderator‍ Hello......
Side Effects.....I did experience a lot of fatigue (from the Radiation).....and probably from NOT sleeping well/nor consecutive hours......I managed by napping the afternoon, while my boys were in school......woke up in time for school bus and ready for action!

Regards
Whitelilies
Tilly59
24 Posts
Boy did I have side-effects from the chemo. I had extreme pain in my legs and feet. I had vomiting and diarrhea. But the worst was the extreme dizziness. I complained a lot about it, but no one took it seriously. It was so bad that I could barely stand up. It was a radiation tech who told me it was low iron and magnesium levels. As soon as I started taking iron pills, the dizziness started to subside. It was a great relief.
altachica
85 Posts
Another good topic Lacey_Moderator‍ . I deal with lymphedema, neuropathy and heavy leg syndrome. Today I am going for lymphatic drainage massage which helps a lot. I wear compression garments during the day on my left arm and hand. I also get acupuncture which helps with the neuropathy and heavy leg syndrome. Now that the weather is getting better, I will also go for walks which helps as well.
ACH2015
2306 Posts
Hi altachica

I noted your post (I posted in this discussion as well) and had a question for you. You mention heavy leg syndrome. Have you considered wearing compression stockings to assist in keeping the excess fluid from accumulating in the leg(s)? I have lymph edema after removal of both the tumor and all lymph nodes in my left inguinal region (groin) as part of my treatment. I find a huge difference in regularly wearing my stocking. I also have separate compression shorts to help manage the fluid build up that flares in the groin, pelvis and trunk. Especially when doing physical exertion / lots of walking, biking etc... the combination of both help mange not only fluid build up, but improve the mobility and reduce that painful fullness that comes and goes depending on many factors. I just thought I'd mention it, because you do say you wear a compression sleeve and gauntlet on your arm / hand. Also, (you likely know due to the compression you currently use) if you are in Ontario, these devices can be approved for 75% of the cost through the ADP (Assistive Devices Program) that make a huge difference in our costs.

Keep safe.

ACH2015
Littlebeth
144 Posts
Hi - I am just three weeks past my last radiation following chemo and surgery for breast cancer. I was terrified of the nausea and vomiting I had always associated with chemo but, thanks to the great drugs they give you, I had no vomiting and very little nausea. However I think I had almost every other side effect on AC - hair loss, joint and body pain, severe fatigue, headaches, taste issues, etc. There were a few that caused particular difficulty:

Loss of appetite/ loss of weight - I found foods that I could eat and pretty much stuck to those - some days that was only cold foods in small quantities. I ate a lot of avocados, oatmeal, soup, peanut butter, eggs and salmon. When I continued to lose weight I was told to add extra fat to my diet so I added nuts, ice cream and whole milk along with Ensure - not the healthiest diet but it did stabilize my weight. Eating small amounts more frequently is a must, along with drinking lots of fluids.

Mouth Sores - They were always worse the week after chemo. I used salt and baking soda mouthwashes at the beginning, then Nystatin and finally the only thing that helped was my oncologist’s version of “Magic Mouthwash”. I also sucked on ice chips while the chemo was being administered.

Hand-Foot Syndrome - I have very cold hands and feet and no one had warned me that applying heating pads to them during AC could cause HFS. My soles of my feet blistered and started to peel, I developed ulcers on my toes and it was very painful to walk. The advice was to apply urea cream to my feet twice a day (I used UriSec 22%) and Polysporin on the ulcers to prevent infection. This kept it from getting worse although they had to change my Taxol treatment from 4 dense dose sessions to 12 weekly ones because it also causes HFS. I still continue with daily applications of urea cream. As an odd side effect of HSF, I have lost my fingerprints and it is not known if they will ever come back. I discovered it when trying to open my laptop with fingerprint ID.

Peripheral Neuropathy - I’ve got it but nobody seems very interested in helping me deal with it. They just keep telling me to be patient and it will go away in 18 months. I am hoping to learn something from others who are dealing with this.

While the anti-nausea drugs were a great salvation, they gave me one of my most difficult side effects - constipation. Trying to get control of it became my great pre-occupation the week of my chemo infusion. It caused terrible stomach pains, endless bowel and related issues, and constant anxiety. Everybody had solutions - mostly various combinations of laxatives, starting before chemo - but I finally got it under control when a nurse suggested I try adding prunes and prune juice.

I didn’t get as much fatigue as I expected during radiation but I have had more since it ended and I’m still dealing with nail damage, post-chemo arthritis and a mysterious rash that no one seems to be able to identify.

Sent from my iPad
law1
716 Posts
Wowee Zowee..... the most agonizing side effects following my radiation for tongue cancer, aside from my horridly rude, yelling, and gruff behaviour my friends are slowly revealing to me, I had awful swelling of the throat coupled with hideous and painful tongue blisters for about 9 months after my last radiation visit.
The best remedy I had for coping with the pain, so that I could swallow some calories and stop losing more weight, was having my dentist file my molars to allow healing and eliminate the slashing of the blisters,as well as a topical anesthetic gargle recommended to me by my ENT doc.: Lidodan 2%. Although expensive, it saved me countless bouts of agony. Other mouthwashes (Magic Mouthwash, salt water) had no effect at all.
Fatigue and constipation were/are ongoing...but manageable..... and, CancerConnection folks kept me from falling further down the rabbit hole.
law
Debbie4045
8 Posts
Hi
i only really got tired and no appetite
jRiffRaff
43 Posts
The side effects I experienced were from my chemotherapy and included:
altered sense of taste, neuropathy (so-called 'first bite syndrome' was the worst) including cold sensitivity, dry/flaking skin on my feet, fatigue, irritability and bowel irregularities - but surprisingly no nausea.
I used Udderly Smooth lotion for my hands and feet, the usual bouncing between Restoralax and Immodium for the bowel, and not much else, other than support from my wonderful wife to help me manage.
I'm 3 months post-chemo and except for some minor sensitivity in my feet, my other side effects are all gone. One...other lingering side effect is that I still can't walk a straight line...

jR
dster2400
35 Posts
I didn't experience any side effects from my skin caner, because they were able to get ride of the cancer through the use of surgery. I did however have some side effects from the Chemo that I had in 2002 for the Testicular cancer. The days that I was actually getting the treatments, those nights I had vivid dreams, they felt like a different reality. I would wake up feeling that I was - for lack of a better term - going from one reality to another.

Fortunately these dreams only lasted while I was receiving the treatments, and they totally disappeared when I had completed the treatments, and have not returned since.

I had a prescription for the nausea so that fortunately was not a problem.

dster2400


Brock C
92 Posts
I had stage 3 anal canal cancer. My treatment consisted of 30 days of simultaneous chemo and radiation therapies over an 8-week period.

Did you experience side effects from your cancer or cancer treatment?

Yes, big time: Excruciating pain in my bum began 3 or 4 days into treatment - particularly when I had a bowel movement, which was frequent and almost-entirely out of my control. I begged doctors for painkillers, we tried several, to no avail. The pain tapered off a few weeks after treatments ended. But the lack of control over my bowels continues to this day - almost 3 years later - albeit to a lesser degree.

Mental side effects kicked in as soon as my treatments ended. Despite being in remission, I was unfocused and ambivalent about everything. I simply didn't care about life and I didn't care that I didn't care.

What helped you manage?

I've learned to adapt to the ongoing physical side effects - I had no choice; I had to accept that bowel issues were my new normal. I use Metamucil and Imodium as necessary.

My mental condition became so severe and I was so desperate that I sought out counselling. I hadn't realized there was a psychosocial oncology department where I was being treated. The therapist recognized my clinical depression and referred me to a psychiatrist. The psychiatrist prescribed several anti-depressants and we played around with the doses until we found a combination that worked. Now that I'm feeling much better I'm slowly being weaned off the drugs. But Covid has thrown a wrench into the works; doctor doesn't want to continue reducing my meds until we're all more confident about putting the anxiety-inducing epidemic behind us.

I'm oh-so-grateful to everyone who played a role in my recovery but I will say it might have been helpful to have had some warning about the possible side effects of my treatments. There was a stretch of time when I felt so very alone. CancerConnection has been a Godsend - thank you so much. But I didn't learn about it until I'd already gone through much of my suffering and even then, it was only by chance.

altachica
85 Posts
Thanks for the suggestion ACH2015‍ . I do not have lymphedema in my legs though. The heavy leg syndrome is caused by previous chemotherapy treatment, compounded by neuropathy...a totally different feeling to the lymphedema in my left arm. I will ask the Registered Massage Therapist who gives me the lymphatic drainage massage if she thinks compression stockings would help. If so, I will have to go to the Lymphedema Clinic at Sunnybrook to have them fill out a new ADP form for compression stockings.
ACH2015
2306 Posts
altachica

I am surprised compression was never suggested or offered to help manage the heavy leg.

"Wear compression socks. This type of sock creates graduated pressure on the legs to promote the return of blood to the heart. Ask your pharmacist for advice to choose the most suitable product for you". This quote is from Heavy Leg Syndrome a link I found about the condition.Although the quote states compression socks, certainly stockings (I wear thigh high stockings and compression shorts to manage my situation) or other tailored compression may help you manage the condition somewhat better.

let us know what you discover.

Keep safe

ACH2015
altachica
85 Posts
ACH2015‍ , unfortunately my oncologist doesn't offer much help with the heavy leg syndrome other than exercise and deal with it. I have not discussed the heavy leg syndrome with the lymphedema clinic because I only have lymphedema in my left arm and hand. The lymphedema is from removal of 13 cancerous lymph nodes when I had mastectomy of my left breast in 2015. The heavy leg syndrome happened WAY AFTERWARDS as a side effect of Abraxane chemotherapy.
ACH2015
2306 Posts
Yes, I know all about lymph edema altachica‍. Had all my left inguinal (groin) lymph nodes taken out during surgery in 2017 along with the tumor. And as you said, the HL syndrome occurred long after chemo as a side effect. Let us know what you find out from the therapist.

Keep safe

ACH2015
supersu
1170 Posts
great thread!

I thought I had coasted thru my radiation last summer--at my final appointment the tech pronounced me 'looking good' - ha

about 1 week later I got these strange little 'bubbles' on my skin, (which had also dramatically changed to a bright red color),---over the next few weeks I ended up with some really painful open ulcers!

the only thing that helped with the burning pain was a trick I gleaned here on these forums, home-made saline stored in the fridge to cool things off -- not sure if it helped with the healing, I think time took care of that, but ooooo - the relief of the saline was like magic. such a simple solution, to what at that time, seemed an overwhelming problem - once again THANK YOU to folks here for pulling me over the finish line!

everything resolved itself, and at my christmas mammo - the tech asked which side was affected! ha ha, not sure it really is that hard to tell, but that did make me feel very good.

best to those who are suffering - hope you find some tips & tricks to help you out

cheers
su


I was diagnosed and treated with F.U. CHEMO AND RADIATION for squeemacell carcinoma in my body but it presented as a growth on my back end. Had all the 4 chemo after party fallouts nausea, balance, cramps , lost in thought, and I feel worse now then I did before I knew... And sad part is I feel I'm not done yet. Body is always in pain and the only relief I can find is through CBD cannabis which I've used for around 37 years in all forms .... Is helping but the feeling of the chemo going through my body is a ugly feeling...
Pleuvoir
22 Posts
Anyone know of why products for dry mouth and throat? My father takes morphine for pain and gets very dry and also mucous feeling in his throat a lot
ACH2015
2306 Posts
Pleuvoir

When I was on chemo, I developed dry mouth and was worried my gums looked as if they were receding.
They recommended Biotene mouth wash - also in a spray. It helps to keep the mouth and gums moist. Give it a try, and I am sure there are other similar products out there.

ACH2015
Runner Girl
2799 Posts
Pleuvoir

I concur with ACH2015‍ on the Biotene mouth wash and spray. They also have a toothpaste and a squeezable gel tube that fits in any pocket to have on hand for any time needed.

I used all of their products during my chemo.

Runner Girl
Pleuvoir
22 Posts
Thanks for replying! My dad finished radiation and I see biotene but it only mentions dry mouth, his throat is also getting so dry and building up with as he puts it gunk especially at night and makes his breathing worse. I saw a spray shoppers may have called mouth kote which mentions throat as well. Anyone heard of or try this? Also would a humidifier be beneficial even in the warmer months? He has throat cancer and respiratory issues like emphysema. Any suggestions for dry mouth and throat as well as breathing would be helpful!
ACH2015
2306 Posts
Hi Pleuvoir

I have not heard of the mouth cote myself, and it might be a good idea to run it by the pharmacist and the oncologist first. If it is mucus, is there anyway the oncologist can recommend products that are safe to use or help reduce this issue? Same as the humidifier, best to check with the medical professionals as you mention emphysema and you don't want to make a bad situation worse unintentionally - right? I mean with potential for pneumonia or other issues.

ACH2015
Pleuvoir
22 Posts
Thanks for getting back!

i definitely plan to run it by there pharmacy as well as the oncologist, I’m just trying not to be to overbearing as my stubborn father has a lot of pride and is trying to hold onto his independence and just really takes help as pity. But I hope to discreetly discuss it. I’m also frustrated with his liquid pain meds over 2 weeks now not delivered and every time he calls he’s told the doctor sent it down then the pharmacy can’t find it. Not sure if there’s other information I’m not aware of but I hate seeing him in pain. Luckily he has pills to tie him over
ACH2015
2306 Posts
Pleuvoir

Happy to help. It was good timing as I was on line and saw your post.

You aren't being overbearing - just concerned and thoughtful. Been there many times as I am sure you have been as well. Especially when family and friends can't necessarily do for themselves - we have to step in to assist when needed. With medical conditions and cancer as it relates to breathing and humidity and mucus etc... always beat to run it by the medical folks as well as here on the site. They may have solutions to the problems vs just treating the symptoms - right?

Re the pain meds issue, Perhaps you could call the doctor and the pharmacy and see if something is being missed somewhere. Keep doing what you are doing, your dad needs your assistance and it is not overbearing. I am sure he would - and has done the same for you. Remind him of that!

Keep safe

ACH2015
Pleuvoir
22 Posts
Thanks for the kind words!

His wife has also called the hospital as well and it infuriates my father but I keep getting the same story and it’s been over two weeks. And for sure I agree getting well rounded input from professionals as well as those who can relate to what we are going through or have been through it themselves it really is helpful!



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