Newly diagnosed, seeking advice please

Hi . I just dropped by, I myself have a different type of cancer. I'm sorry to see you've not had a reply from the members of this group as yet. This is a very busy group so by me answering it'll bump up your post to the top of the listings so I'm sure someone will be along soon to answer.

By the time you read this reply you will have had your first session so I hope it went well. I myself haven't had chemotherapy so again, I'm sorry I can't help.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

To find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section. 

Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

Sending you welcoming hugs B xx

Hi, I've had the chemo you're about to have,  finished in june this year.     I had a very good result with significant reduction in the tumour and no return of the pleural effusion.    I had 4 rounds, the first one i just got a bit if tiredness but the side effects increased a bit with each one.   Tummy upset, lack of energy and for me some very low blood pressure resulting in dizzyness.   It only lasted for the 5/6 days after then things got back to normal.  I lost some hair which is almost grown back now.     Make sure you drink loads and plan to rest after.  Have some pain killers and meds in case you get the runs!  I hope i am not scaring you, it wasn't as bad as i was expecting and i did go to my part time job after thevfirst werk was over.     Good luck and take care. X

Hiya I’m so sorry you find your self on this forum, I kno how scary it must be. My mums has lung cancer and she to is haveing the same treatment as u,  she started her treatment in June this year every 21 days, she is now on 1 chemo nd 1 immunotherapy

  My advice is make sure you have a thermometer and check your temperature regularly, any increase could indicate infection drink plenty of fluids / rest when u need to, 

my mum has treatment every 21 days, she still has all her hair, she drives herself to her chemo / blood apts / still does her cleaning her shopping /. The only downer is if anyone is  poorly they can not go near my mum, 

the down side is , my mum has had 2 infections and had to have iv antibiotics at hospital/. That’s why I said check temperature/. And her liver results were very high so had to pause treatment for an extra 2 weeks / but once all was ok treatment resumed, 

mums ct results hve shown the treatment is working,  and cancers are shrinking

mum does get tierd a few days after the treatment but not straight away 

get a diary and write these things down, as the same things happen to my mum after each treatment,  so that way you know roughly what days you are going to be more tierd, 

this isn’t nice for anyone on this forum, but the treatments are so good and so advanced these days,  wishing you all the best with your treatment 

xx

Hi trainspotter 

I just wanted your advice as my mums primary bowel cancer then secondary liver and now been told gone to both lungs , she’s fought this for 5 years now but there’s only the chemo option for her now , she’s been on this chemo  xelox(capox) before and has every 21 days but she asked oncologist about immunotherapy but he said he’s never recommended it to any of his patients as makes them very poorly , I know your mums had both and just wondered what side effects was she warned about with immunotherapy , and mums bowel tumour sent away to check if can even have it , did she also go through this ? Many Thanks 

Danielle 

Hi Danielle , I am really sorry your mum and  your family are going through this , I can only tell you about my mums cancer which is non small cell lung cancer / so they gave her biopsies this determines weather you can have certain treatment so my mums came bk she could have immunotherapy, 

she has chemo and immunotherapy the immunotherapy is called keytruda,  she has this every 21 days,  the only symptoms are tierdness, / chemical taste in mouth and wierd feeling in throat chest / oncologist said this is side effects of the treatment/ as she is having both I do not kno which one is giving her which ,  Everyone reacts differently to the treatment,  my mum liver levels were raised and hand to hve steroids which is common with immunotherapy/. My mum has had 2 infections where she has had to have iv antibiotics in hospital- due to low immune system fRon treatment, do you think your mum Your mum is strong enough for treatment/ my mums cancer is stage 4 , but it has not spread all over there are spotting on her adrenal gland / and the main cancer in her lung,  with lung cancer when it gets diagnosed it’s usually at stage 4 as it’s one of the cancers that has no symptoms / but my mums drives her self to her treatments and drives her self home / she does her shopping her cleaning / goes for walks cleans her house / she is strong in the mind / she is 7.6 stone lost a stone during treatment/. My mum is lucky that even tho it was caught at stage 4/ it hadn’t spread all over /. You should ask oncologist and push for your mums treatment , similar thing happned to a family member last year blood cancer the hospitals wanted to right him of / but guess what he is reacting great to treatment, there’s always hope and you just need the right team of people to help. As long as your mum Is strong enough, please let me know xx and I hope your mum will be able to get the treatment   X love nicole x

Hi My mom was diagnosed with non small cel cancer in her right lung, she had surgery which removed two  lobes of the lung.  They gave not further treatment at this stage, 9 months on my moms cancer returned. We saw the oncologist and mom was found to have pd1 cells in her tumour and that qualified her for immunotherapy.  She has now completed two years immunotherapy with no side effects whatsoever.  We are now one year post treatment and her cancer is stable.  My mom is 87 and was very positive all through the process.  She had three weekly infususions to begin with and when covid started we commenced double the dose every six weeks.  My mom is doing well.  She had keytruda . I was very worried but we had a fine surgeon and our oncologist is a super man always there for mom and myself,  i hope your mom gets a good service and does well with treatment.  Xx

Hi Nicole 

thank you for your quick reply , and kind words . like your mum mine has been positive throughout her treatment and faced it head on. She’s had bowel surgery , liver resection and 2 types of chemo over the 5 years so I know she’s not as strong as pre cancer so will start chemo as soon as get her appointment and wait to hear if can have immunotherapy. She was stage 4 five years ago and can only try to stop it spreading any more.

I’m glad your mums is now stable and hope this continues, its hard to see our loved ones suffer so sending you love and strength too x

danielle 

Hi Danielle,

I have an uncle, he had adrenal cancer 5 years ago had his adrenal gland removed but it split /   He chose not to have chemo or Any thing at that point, as they didn’t kno if the cels would form any tumours, 

now today as we stand / he has dyalisys  for his kidneys 3 times a week/ the cancer is in his stomache / his spine / his lungs / he is on chemo tablets every day , and has had radiotherapy on his head/ even tho is sounds bad/  the chemo tablets are stopping the spread,  

the advance in medicine is amazing, and I hope you get a good result with the biopsies xx. Please let us kno xx.  Nicole xx