topic Re: Worried about effects of Chemo in Treatments and side effects

Worried about effects of Chemo

Albundy21 — Mon, 08 Jul 2019 13:15:29 GMT

After operation to remove Bowel cancer on right side I'm now due to start 12 Cycles of chemo. Oxaliplatin, Calcium Folinate and Fluorouracil by pump over 46 hours at home. I'm finding this is causing me more stress than the operation. The number of possible side effects is scary. I recently had pic put in and this was painless, they have also talked about putting a port in.... What. Is better? Does one have more risk? I'm also hoping that I don't get to sick from the Oxaliplatin as I've been told you can't have any cold drinks including water for a couple of days after having this drug... I would be interested to know what experience others have had.....

Re: Worried about effects of Chemo

sch — Fri, 12 Jul 2019 11:15:48 GMT

Hi Albundy21,

Bowel cancer is a shitty thing to happen.

The side effects are pretty damn annoying, but here is a fact for you. The chemo drug side effects don't effect everybody in the same way.

That list of side effects you read is a possible list. I can tell you now, you won't have them all.

OK. Oxaliplatin sucks. Having cancer sucks worse. My own experience with oxaplatin was that when I started chemo, there were 0 side effects. After round 2, I had numb lips and a sore throat. Round 3, cold water felt like razor blades sliding down. Tip, just drink warm water.

The oxaliplatin is going to make you feel nauseus. Take anti-nausia tablets.

You may have a number of side effects or you may have none.

For each side effect you experience, try strategies to work around. Discuss them with your doctor, especially neurapathy.

Best of luck,

sch

Re: Worried about effects of Chemo

Albundy21 — Sat, 13 Jul 2019 00:08:07 GMT

Hi sch

Thanks for getting back to me, Its just good to hear from someone who has some idea what you are going through. It's easy to get overwhelmed, sometimes by it all that's why Iam glad thier are forums like this.

Thanks

Re: Worried about effects of Chemo

PhilPepper — Mon, 15 Jul 2019 05:04:26 GMT

Hi Albundy,

I have also just had my bowel cancer surgery. Chemo is my next step.

I am waiting to see my Oncologist at the end of the month. I've being talking to some cancer veterans and reading through various sites to find info , trying to get an idea of what is to come. Like yourself, I've heard plenty of horror stories, but also ways to deal with them. I think the process I'm going through is similar to what I do at work. I look for risks and work out a way to manage them, so I can keep the project on track. It seems to be coming easily to me.

It takes me back a bit when I consider that this project is my health and longevity, but nonetheless, I'm able to draw on the practicality of this approach .

I'd like to follow your progress . It seems we are on a similar path. I am in the ACT. Where abouts are you located.

Cheers

Phil

Re: Worried about effects of Chemo

kj — Mon, 15 Jul 2019 06:18:31 GMT

Hi Albundy 21

A good mate of mine had rectal cancer surgery ,also a reduction of his liver due to metastasis,he had the same combination chemo you are having ,his side effects were very cold hands and feet he puts gloves on to take food or drink from fridge,also stomach upsets he has to watch food and drinks,and bowel habits,he had the pump infusion for 2 days after chemo at hospital,back at work later same week,you can’t think someone else’s side effects will be yours ,our bodies react completely differently .

He is now on maintenance chemo,I rang him recently after he returned from work ,to see how he was going he said I am going on a 6klm walk he is an inspiration to me. Yet when I was on chemo I could barely make it around the block and his chemo was a heavier dose.

So just go in with an open mind as to how Chemo will affect you good luck

Re: Worried about effects of Chemo

Albundy21 — Sat, 27 Jul 2019 01:22:36 GMT

Hi Phil

Im in W.A . The journey for me has been a bit surreal it was not expected. I didn’t have any signs or symptoms no history of cancer in my family. I just decided to finally do the “test “ they send in the mail. This all around Christmas and further tests by another specialist confirmed it was cancer, but didn’t know how advanced till I had further tests including PET scan in the new year. Lucky for me they determined that it had not spread and was contained . So I had my op last week of Febuarary and spent a week in hospital , the pain management team were excellent very good and pain minimal. So once I was discharged life went back to normal for a couple of months. Then I started my chemo and have just finished my second round yesterday it being every two weeks. The main side effects I had was after the first round was the cold sensitivity was bad the first week , can’t touch anything cold from fridge or cold water from tap , I get pins and needles in my hands and no cold drinks. The cold sensitivity is strange as it seems to come and go and was not as bad the day of my second treatment. I’m also just starting to notice a bit of a metallic post in my mouth which people have mentioned in other posts. Regards Albundy

Re: Worried about effects of Chemo

PaulineG — Mon, 29 Jul 2019 08:27:00 GMT

Hi Albundy21,

I currently have bowel cancer which has spread to both lungs. I was diagnosed in 2015, have had many operations and treatments, have an iliostomy and am currently undergoing chemo (cycle 16) and am still battling on so hang in there.

I have had a pic line and currently have an arm port. I would recommend a port. Once it is inserted it is totally covered by your skin and only accessed by a needle. As it is covered and nothing protruding I would say there is less chance of infection. I have had mine since July last year and have not had any issues whatsoever. You can also get some ointment from your oncology unit that numbs it prior to being accessed so you can't feel the needle being inserted at all.

Good luck.

PaulineG

Re: Worried about effects of Chemo

PhilPepper — Wed, 07 Aug 2019 13:17:19 GMT

Hi Albundy

Tomorrow, I'm at week 5 post surgery. Still adjusting to managing an ileostomy stoma. Baby steps forward.

Today I had my first shot of chemo, oxalyplatin. You nailed it with all the cold sensations descriptions. I got them too. I'm preparing a long winded description on my blog.

Tonight, I started my oral chemo, Capecitabine. These will last 2 weeks. I'm not sure what side effects will come from this.

Early days. I'll take it as it comes. I hope you are managing well. Take care.

Cheers

Phil

Re: Worried about effects of Chemo

PhilPepper — Wed, 07 Aug 2019 13:30:53 GMT

Hi Pauline

I hope you are doing well. I just started cycle 1. I only have to do 4 and already, I hate it. Are you up to cycle 17 yet?

I had a cannula this afternoon. They told me to tell them what I was experiencing. When I told them about the pain, it wasn't so bad, but they thought I was complaining. So they offered me a pic line for next time. You've scare me off a pic line, but they made it sound like a good idea. I just told them it was fine. I'll put up with 3 more cannulas.

Take care and good luck with the ongoing treatment.

Cheers

Phil

Re: Worried about effects of Chemo

PaulineG — Thu, 08 Aug 2019 00:22:57 GMT

Hi Phil,

When I gave my opinion about my arm port it was a comparison between a pic line and a port. In my previous post I mentioned that I had had a pic line but I want to make it clear that I didn't suffer any complications with the pic. I am concerned that I have scared you. If you asked me the question would I recommend (prefer) a pic line or canula I would choose the pic line. I used to wear a bandage "sleeve" to protect the pic line, you can't get it wet but it can stay in for a period of time. Yes, I was concerned about infection but in reality I didn't have any issues. I have never had a canula outside of hospital but would guess it would need the same protection as the pic but my understanding is that it can't remain in for more than a few days due to the risk of infection?

To sum up, depending on the length of treatment and what is recommended, my preference would be a port over a pic line and a pic line over a canula.

Consider all the information given to you, ask questions of your doctors/nurses and above all don't be scared just be careful with your management of your canula/pic line and you will be ok.

PaulineG

Re: Worried about effects of Chemo

PhilPepper — Thu, 08 Aug 2019 00:33:56 GMT

Hi Pauline

Thanks for responding.

The cannula is removed at the end of treatment. Only hurts going in or when I bash my arm around like a mad man.

It causes pain in the arm as they load me with poison. They said the pic line won't have the same effect. As I already have a stoma and an ostomy bag hanging off me, I'm not keep to add anything else.

Also, it's only another three treatments, I'm happy to do a cannula each time. I have a high pain threshold, although my wife doesn't think so.

My chemo is actually less impacting this morning and I found myself in a good head space. Certainly not anxious like yesterday.

Thanks for the advice.

Take care

Phil

Re: Worried about effects of Chemo

PaulineG — Thu, 08 Aug 2019 00:52:06 GMT

Hi Phil,

You definitely sound more positive than in your previous post. It is interesting that you used the word "poison" as I think most non cancer people confine it to treatment or medicine. They are actually filling us with poison and that's the term I use. When I tell people that is why I suffer all the side effects and why it has such an affect on my body they have more of an understanding as opposed to thinking medicine could only be a good thing.

I have had my ostomy bag for 4 years now and if yours is permanent you will get used to it. It is the new "norm" so try to be positive about it rather than thinking it is something hanging off you.

I wish you well.

PaulineG

Re: Worried about effects of Chemo

Albundy21 — Wed, 28 Aug 2019 14:21:34 GMT

Hi. PaulineG

Finally had my port inserted on Monday, so the port is still a bit sore, but nothing a couple of panadol won't fix. They removed the pic line today, I was surprised no pain all over in about 20 seconds! Next Wendsday is when my port will be used.... It is 2 weekly cycle. They have told me it will be sore 3-4 weeks. I will make sure I ask for the ”ointment” you mentioned to numb the needle!

Take Care and I hope your treatment goes well

Regards Albundy21

Re: Worried about effects of Chemo

Albundy21 — Wed, 28 Aug 2019 17:49:36 GMT

Hi Phil

@Albundy21 wrote:
Hi Phil

Im in W.A . The journey for me has been a bit surreal it was not expected. I didn’t have any signs or symptoms no history of cancer in my family. I just decided to finally do the “test “ they send in the mail. This all around Christmas and further tests by another specialist confirmed it was cancer, but didn’t know how advanced till I had further tests including PET scan in the new year. Lucky for me they determined that it had not spread and was contained . So I had my op last week of Febuarary and spent a week in hospital , the pain management team were excellent very good and pain minimal. So once I was discharged life went back to normal for a couple of months. Then I started my chemo and have just finished my second round yesterday it being every two weeks. The main side effects I had was after the first round was the cold sensitivity was bad the first week , can’t touch anything cold from fridge or cold water from tap , I get pins and needles in my hands and no cold drinks. The cold sensitivity is strange as it seems to come and go and was not as bad the day of my second treatment. I’m also just starting to notice a bit of a metallic post in my mouth which people have mentioned in other posts. Regards Albundy

Re: Worried about effects of Chemo

PhilPepper — Wed, 28 Aug 2019 20:38:15 GMT

Hi Albundy

I started cycle 2 chemo yesterday afternoon. I was really anxious leading into because I knew what to expect. I did a lot of mental preparation but couldn't turn it into a positive vibe.

They tried finding a vein in my left arm. Reluctantly went right arm, but suffered no pain in my right arm, where my left arm ached for a week.

Other than that, all my side effects were at least doubled and a whole bunch of new ones which scared the crap out of me. Having an ileostomy, I could actually see it happening (sorry pooh jokes lighten my burden).

On the good side, my wife has been very supportive, talking me through my anxiety, keeping me comfortable and stressing over things so I don't have to. Now I'm just waiting for the side effects to subside so I can look after her a bit. After all, this is her journey too.

Thanks for your update. It's good to compare notes. I'll be adding more detail to my blog. Please stay in touch.

Take care and stay strong.

Cheers

Phil

Re: Worried about effects of Chemo

Yorkiemomof3 — Sun, 05 Sep 2021 20:57:07 GMT

have stage II SCC rectal CA, newly diagnosed 7/21. (53yo Female)

Could you shed some light on which chemo regime you had and what all your side effects were? Did you also receive radiation? I'm scheduled to receive 5fu 5 days a week and 2 doses of mitomycin

(one in the beginning and one @ the end). I will be getting a port to receive my chemo through, which I have not gotten yet, but it will be scheduled next week. I am to receive the targeted radiation 5 days a week for 5-6 weeks. I would like to know about hair loss if you know & could share that info.

My Dr's told me that my particular chemo regime doesn't usually cause much hair loss.

I'm just wondering if this is accurate or if I need to be prepared and order a wig or some such alternative. I

know the Dr's want to keep patients' spirits up & don't want to give you negative info straight out of the gate. I am a realist & want the truth, so I can prepare & deal with facts & the reality of things.

Any info & advice will be appreciated.

Kindly,

Melissa

Re: Worried about effects of Chemo

Ness1983 — Thu, 24 Mar 2022 11:54:00 GMT

Hi Phil,

I have stage for bowel & liver cancer. I'm also in WA. When did you get diagnosed? And what future did your oncologist say you would have. Mine has said it's incurable and they won't operate. I just have to stay on chemo & immunotherapy. I'm just wondering what other ppl are told. I'm 38 yrs old, have done 7 cycles so far.

Re: Worried about effects of Chemo

Wu2022 — Tue, 02 Aug 2022 07:46:05 GMT

Hi Ness1983,

I'm also stage4 bowel&liver and been on chemo last 4 months (fortnightly) since diagnosed. Also been advised I'll be on chemo indefinitely which is inconsistent with what others are telling me. With each cycle, I feel the side-affects becoming more and more prominent especially hairloss/dry skin/facial rash/diarrhoea

Really curious about latest 2 break-throughs [1] US drug with 13 patients, trial 100% success rate with colon tumours vanishing [2] Closer to home StVincents sydney with a pill that has the same effect