Immunotherapy & back pain

Hi Allyona 

I noted your post had not had any replies yet and did not want you to think it had not been noticed. By replying I will bump it back to the top of the list too.

When my wife had chemotherapy we were given a number to ring if we had any issues especially any that were unexpected. Of course sometimes nobody really knows the answer and often we do not even know the right questions.

I can certainly relate to issues with breathlessness since I have been hospitalized about four times where that was the most significant symptom and no cause was ever really found - it can be very frustrating. 

Sorry I do not have any real answers for you but fingers crossed for whatever you decide to do next.

<<hugs>>

Steve 

I'm sorry to hear what your going though, I've had chest pain and breathlessness during chemo and it can be due to the sides effects. I have called my nurse and left messages but I guess they really busy. Fingers cross everything goes well for you. take everyday as it comes, Your a fighter! ️

Try the immunotherapy team that are treating you . They should be able to advise .  Immunotherapy has a lot of side effects and toxicity usually after third dose ( so the oncology team say) Stay strong xx

Thank you for your response. I hope your doing well yourself.

i think the cause of my chest & back pain & breathlessness was anxiety it has settled down in the last few days doing some relaxation techniques and spending some time with family by the sea is helping.

fingers crossed it’s not anything more serious than that

Thank you they are to be fair it’s just so frustrating when there are no answers except everyone reacts differently!!

I think a lot of it was anxiety also I’m feeling better in the last few days so hoping to be able to my 4th double treatment

Hi Allyona,

Sorry to hear about your experience. I have a different experience but wanted to say even if they stop the Ipi+Nivo, this isn't a reason to worry becuase your treatment will not stop, but rather  - I imagine - you'll continue with single Nivo treatment. This is what happened to me. I only had 2 doses of the Ipi+Nivo. However, my doctors reassured me that it was part of the plan to 'stop' the Ipi/Nivo (in the situation of bad side effects) and switch to the Nivo. I can't remember the statistics now but only a minority of people make it through the 4 doses of Ipi/Nivo. Doctors told me that some people get 100% of the benefit of the Ipi/Nivo from just one double-dose. Or two. There is no pattern. But to reassure you, I hope, I was told that I could have gotten the full benefit (of the 4 doses) from just the 2 doses I got. That's because different individuals react differently. I was very scared about 'stopping' the Ipi/Nivo. I thought I'd die. But in fact my treatment has continued, which is great. My side effects took a while to die down (hepatisis + colitis) but I'm on monthly Nivo now and going in to dose number 9 next Monday.

On the other hand, if you're worried they'll give you the 4th dose and make you sicker, don't worry! Oncologists really take care of people on Ipi/Nivo. I was told 'We're not going to go ahead with the 3rd dose because we don't want to put you in any danger'.

Hope you feel better soon. 

Dots

Thank you Dots , that’s very reassuring to hear, my oncologist & specialist nurses are aware of my reactions so I’m putting my trust in them ..I am feeling a lot better as each day passes.

best wishes to you also so glad to hear you are tolerating the Nivo so well did you have good results in your scans after 2 the ipi & nivo treatments?

ali x

Yes: I was lucky that my tumours responded positively to the treatment. The biggest tumour (they're all in my torso lymph nodes and groin) decreased in size/agressivity by 50% just with 2 doses. Since switching to Nivo, the tumours have continued to get a tiny bit smaller and/or less aggressive each time. My oncologist described it as a slow response but this is still absolutely a positive response. I said 'oh, I'm disappointed they didn't all disappear or that the incremental decrease in size/aggressivity isn't more pronounced'. My oncologist said 'No, don't think like that. The main thing is: cancer wants to grow. Now, it is not growing. It is stopped.This is a positive response to the treatment. It's positive and there's every reason to be optimistic.'

Psychologically, as I type those words, I feel neutral because I honestly just want it all to be gone and for 'this' to be over!! :) I think that's very normal. However, I'm learning to accept that it's all an open trajectory. 

Certainly, my team weren't worried about stopping the Ipi/Nivo: it totally wasn't a 'deal-breaker' in any way. They were like 'We expected this stop. It's all part of the plan. Now: let's carry on.' :) 

Dots xxx

Hello Allyona,

Like Dots, my tumours are responding positively to the treatment.

i had the 4 double doses, ipi & nivo and now on my 6th treatment of just nivo.

i find i get out of breath easy, i take it as a sign to slow down.

i had back pain prior to my diagnosis and take gabapentin for nerve damage.

My back pain worsened last year and I struggled with a pain in chest, for a week I could hardly move without feeling breathless. Then I went to GP who sent me straight to hospital. 

CT scan showed I had tumours in 5 organs and a fractured sternum.  I had to rest for 3 months for sternum too heal, the fracture was a pathological break and they did not find this right away. After  my first scan the tumours from top of head had gone. 6 months on my scan shows my liver is now clear. I can hardly believe it.

it is so reassuring to be on this site, my emotions go very up and down and I come on to see how everyone is doing.

take it easy when you can. Easier said than done, I know. I’m glad to hear it has calmed down - hope you manage your 4th treatment but no pressure if you can’t.

xx

Thanks so much for your reply , I’m so glad to hear you are responding so well to the immunotherapy I really hope it continues this way for you.  it’s very reassuring to hear from you & others in the same boat  it’s gives me strength to read what others like myself are going through like you my emotions are all over the place I’ve stopped talking to family & friends about it as I’m just sick of being told everything will be fine now your having treatment while I’m very hopeful the treatment will work for me I’ve been knocked so many times I have to be prepared if it doesn’t go my way … I find this site so helpful its helps me cope 

sending hugs to all x