topic Re: Changing treatment centres in Treatments and side effects

Changing treatment centres

Jem68 — Tue, 15 Mar 2022 02:25:21 GMT

Hi, I am curious to know if anyone started with one hospital and moved to another mid treatment. I feel things are being overlooked after informing various doctors. I just don’t know how hard it is as don’t want to affect my Chemo course as on 2nd type.

thanks in advance

Re: Changing treatment centres

Peregrina — Mon, 25 Apr 2022 02:41:11 GMT

Hello, I find myself in a similar situation and have had no success changing treatment centres. Have you had any luck changing centre’s and what decisions have you made around this ? Thankyou 🙏

Re: Changing treatment centres

Jem68 — Mon, 25 Apr 2022 07:03:26 GMT

Hi Peregrina

I haven’t yet made the inquiries yet but going to tomorrow with another hospital and see if possible. I’m hoping it’s easy to do but was worried it would affect my current treatment. But I’ve been a bit dissatisfied of lately so feel good time to make a change or at least find options.

Re: Changing treatment centres

Peregrina — Mon, 25 Apr 2022 07:52:27 GMT

Hello Jem68, I made some inquiries and followed them up . It seems you need a referral from either your GP or treating oncologist to change your treating centre. However, it becomes quite political and doctors do not like stepping on each other toes. Tomorrow I have my fourth chemo cycle out of twelve and have absolutely no confidence in my current treating centre. I have encountered some side effects not documented amongst the enormous list of possible side effects which have scared me and find the staff less than empathic. In my three cycles I have dealt with an unexplained rash, black spots on my tongue, neutropenia, oral thrush and now a DVT. My GP in Sydney will not get involved even though both my major surgeries were in Sydney. My current oncologist believes my expectations are “too high” and I am reluctant to discuss change of treating centres with him at this time for fear it will negatively impact upon my treatment. I feel stuck ! Please let me know how you go, any advice is very welcome. I don’t think I can do another 9 cycles in a treating centre that I have lost all confidence in. I wish you the very best of luck for tomorrow and hope you have a good outcome. 🙏

Re: Changing treatment centres

LindaG — Mon, 25 Apr 2022 12:59:20 GMT

Hi Peregrina, treatment is so hard and you really should have the kindest people around you at the medical centre. So sorry that’s not happening for you and hope you can find an alternative. My haematologist and his team were just so caring during my treatment. It just helped me get through it 💕. Linda G

Re: Changing treatment centres

smca — Tue, 26 Apr 2022 03:57:59 GMT

I did not switch half way through but, my oncologist had me on keytruda too long (ignoring obvious symptoms) which caused brain damage....so if you are not happy I would encourage you to switch....as once the damage is done you can not go back. (for me my cognitive function was impaired and I could not advocate for myself,covid keep my wife out of discussions).....I thought I should stop but was hesitant,Now I would stand up for myself,but too late.

Re: Changing treatment centres

Peregrina — Thu, 05 May 2022 22:14:28 GMT

Good morning smca, I am so sorry to hear of your permanent damage from chemo. I understand how difficult it is to advocate for one’s self in the midst of treatment as I experience “chemo brain” which is paralysing and I do not know how I would communicate anything without a strong advocate. Your post encouraged me to persist with changing treatment centres and we presented at the Emergency Department of a large Sydney hospital with what I believed to be a pulmonary embolus from my leg DVT’s. There I was fully assessed and seen by the most amazing oncology team who obviously saw my distress and despair. The lead oncologist agreed to take me on as his patient and even arranged all the necessary transfer for me. Next week I have cycle 5 at my new centre with no interruption to my treatment. So, thankyou….Earth Angels do exist 🙏

Re: Changing treatment centres

Peregrina — Thu, 05 May 2022 22:22:45 GMT

Hello Linda G, thankyou for your kind words. With the help of my support team I persisted in changing treatment centres and after presenting in the Emergency Department of a large Sydney hospital was accepted as a new patient of the kindest, most gentle oncologist one could hope for in such difficult times. He even arranged my transfer of care for me. Now I feel blessed and hopeful that with a kind and caring oncology team I will make it through this experience. 🙏

Re: Changing treatment centres

Peregrina — Thu, 05 May 2022 22:31:02 GMT

Hello Jem68, I would encourage you to look for options if you are at all unhappy with your current treatment centre. It is possible to change, ask for help, don’t give up. I persisted and am now under the care of the most caring, compassionate team of folk one could wish for. My current treatment is uninterrupted and I have cycle 5 at my new treatment centre next week. 🙏

Re: Changing treatment centres

LindaG — Fri, 06 May 2022 00:18:11 GMT

Hi Peregrina, that’s the best news!! Well done for changing to people who sound so good. It will make all the difference to your emotions! You will get through and hope and pray the result is positive. Take care🙏💕 Linda

Re: Changing treatment centres

smca — Fri, 06 May 2022 05:30:04 GMT

I'm really happy you had a good result...the journey is hard enough as it is....and advocating for yourself is not always possible.....fingers crossed for you.

Re: Changing treatment centres

Jem68 — Sat, 07 May 2022 01:49:12 GMT

I’ve put request in and just waiting for it to happen. Will be much easier on our lives and hopefully a different perspective of my cancers. I have CT scan results Monday which i an nervous about but I’m only on 2 cycle of treatment. They had me on immunotherapy but after 4th treatment didn’t see working and because not under PBS too expensive for them to keep going. I was really disappointed about this as felt I deserved the full cycle to see if it was doing something.
I’m glad you changed. Good luck

Re: Changing treatment centres

Peregrina — Sat, 07 May 2022 02:51:31 GMT

Hello Jem68, I am happy to hear that you have started the process of changing treatment centres. I just cannot imagine getting through the difficult process of chemo without confidence in your treating team and the emotional support needed to navigate this horrible journey. I feel very blessed to have found a team of “Earth Angels” to hold me up in my desperate and despairing days. I can only wish the same for you…don’t give up ! I know only too well the excruciating wait for CT scan results…I don’t think it matters what cycle you are on, it’s really frightening. Hold the hope as we all feel the same, my thoughts are with you. I am so sorry about your immunotherapy treatment, it’s not fair, not just and I believe all cancer treatment drugs should be available for all on the PBS. This journey is beyond hard, beyond terrifying and already expensive with so many out of pocket expenses. Just my travel and parking costs a small fortune ! Please let me know how you go on Monday if that’s okay ? Stay strong and know that there are folk out there supporting you and caring about your struggles 🙏

Re: Changing treatment centres

smca — Sat, 07 May 2022 03:11:55 GMT

I don't know your circumstances...but for me (melanoma) it was first line on the pbs to do keytruda and my lung took nearly 1 yr (16 treatments) before anything happened in my lung (and it went completely) (and about 2 yrs before it affected my head tumors)...I am in queensland. Some of this immunotherapy is in its infancy and I don't think they (docs) have all the answers.

Re: Changing treatment centres

Jem68 — Thu, 09 Jun 2022 17:59:35 GMT

Hi Peregrina

i was able to transfer and all happens next week. Even one of the nurses said it was a good move to do.
I like the idea of fresh eyes looking at me.
hope things are going well for you now.

Re: Changing treatment centres

Peregrina — Fri, 10 Jun 2022 12:07:39 GMT

Hello Jem68,

Great to hear from you….congratulations on your successful transfer to a new treating centre, sounds like a really positive move. I am so blessed that I was able to change treatment centres, all the staff are caring, competent, empathic folk and I feel safe and now in very competent hands. It is so important to feel “held” and “seen” especially on this very difficult cancer journey. Next week I have my 7th chemo cycle out of 12. There has been some horrible side effect challenges, and I have stopped asking myself “what next ? “. I just take life day by day, expect the unexpected and do my best to survive chemo…..it really is wretched, feels more like dying than living some days. Wishing you all the very best with your new team. Stay strong. 🙏