My mums having treatment for anal cancer which has spread to the lymph nodes. She’s on these two chemos on a 6 week cycle with immunotherapy.
im aware that chemo impacts are different for everyone however we would like to know if it does work, would you see the benefit after 1/2 cycles or would you have to do the whole course? Bit vague I know. She will get scans every couple of months I believe.
just looking for people’s experiences/info on the above? They have mentioned level 2 ad level 3 chemo aswel. What is that exactly and how does it work.
any info on this would be greatly appreciated, positive if possible. It’s been difficult seeing her on the chemo at the hospital but unfortunately that’s the situation.
Hello AlexNth,
I am sorry to see that your Mum has been diagnosed with anal cancer with some spread to her lymph nodes.
I had a different type of cancer to Mum but I had the same chemotherapy drugs as Mum is having- carboplatin and paclitaxel. From what I understand it is a combination used for several different cancers.
I did not have immunotherapy.
When I saw my consultant to discuss my chemotherapy I was told that although I could stop at any point that I wanted to ( it was my choice whether to have treatment, she could only recommend it)-but I really should complete the whole course to gain the best benefits.
I did have some issues during chemo and they adjusted the dose of paclitaxel which helped. Carboplatin stayed the same through out. When the paclitaxel dose was reduced due to neuropathy symptoms, my other side effects also lessened. I was told that carboplatin is like the cake and does most of the work and that paclitaxel was like the icing on the cake. All the other side effects were managed with medication.
I was not offered scans during my chemotherapy.
Chemotherapy was not easy and it must be hard to see Mum going through it but I did find it doable with plenty of support. There are side effects that can be unpleasant but there is advice and medications that can help and the oncologist can adjust doses if necessary so Mum can complete her treatment. From what I understand through my own experiences in meeting people undergoing treatment at the same time as me, is that if you don't respond as expected to one type of chemo then another combination can sometimes be offered as a second line of treatment. My chemotherapy finished in Aug last year and I am now on 12 weekly check ups and doing ok.
I hope this helps a bit, I hope that the rest of Mum's treatment goes well.
Jane
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Hello Alex
As you know I had six months carboplatin/paclitaxel prior to the chemo/radiotherapy. Because my cancer took so long to identify, the PET scan I had at the very beginning was nearly three months old, and my oncologist decided to do another. This didn't delay the start of chemo and was carried out after only one treatment and when I saw her she told me that they had noted a difference already. However, I do know that that particular scan wasn't the norm and thereafter I only had scans at the three month and six month points. I think the most important factor is that there is no progression of the disease and ideally some shrinkage. If there had been progression they would have reassessed the treatment plan very quickly.
I have been thinking of your Mum (and you) and hoping very much that everything goes according to plan.
Irene xx
Just a follow up bit I forgot to post.
The first cycle of chemo is complete. Unfortunately her and her friend in the same position have both been told their white blood count is too low for chemo this week even though physically they are both doing well.
I was just wondering if either of you know is this fairly common - seems to be the case? For chemo of this sortHopefully cycle 2 next week for them both on Friday.
apart from cancer they are both in perfect health, slim active and healthy.
Irene and Jane - thanks so much for your kind wishes and info, my mum and I really appreciate it. It’s all helped us immensely understand the situation :) Al x
Yes it is very common. After my very first chemo, the next was cancelled because of levels in my liver and the dosage was reduced permanently to 75 percent thereafter. Then another was cancelled because of low white blood count. Like your Mum I was fit and well and was so upset at missing chemo but overall it didn't seem to have a negative effect. As standard I had to self inject with filgrastim every cycle, which raises the white blood cell count, but I am assuming your Mum is already on that. When I saw my oncologist she was totally unfazed and said it was my body reacting and things should settle down. And they did, although bloods continued to be checked every week throughout treatment.
I am hopeful the same will happen with your Mum (and her friend) and that next Friday and future visits will go ahead without any hiccups.
Irene xx
Hi Irene - thank you for the above. She’s spoken with her nurse and feels better about it now. Funnil enough they say you can’t do anything about the white blood count but wait. But when you start researching online there are lots of things you can do. Anyone in that position eating certain vegetables, lean proteins nuts etc. whether or not that’s factual or not is another matter. She’s not on filgrasm as yet. Maybe that will come. I’m glad that you managed to get the cycles in after missing one and sounds like they were keeping a very close eye on things which is reassuring.
im guessing that everyone who’s on chemo has to be monitored to make sure it’s not causing other problems with it being such strong drugs. Perhaps they will reduce the doseage. She seems more tired than usual but been out walking today. Says she sleeps a good 10-12 hours.
I guess everyone reacts differently. It’s hard to fathom how someone so healthy can get it, out of the blue but unfortunately that’s how it is.
I hope you are doing well with your situation and are enjoying the good weather. Thanks again for your best wishes. :) i feel for everyone going through something similar. Must be very frightening, but some of the positivity on these groups is inspiring to my mum and her freind so thank you x x
Jane - thanks again. I’m glad that you have been able to complete your treatment and that you are doing well with the check ups. That’s good news and I’m sure it will all be monitored closely.
I’ve heard they use the same combo for breast cancer, cervical etc. the nurse was saying in fact there are 100s if types of chemotherapy.
thanks for sharing your story, it seems adjusting the doses per individual is quite common and I suppose they have to gauge how someone handles it aswel. She is in this immunotherapy drug aswel so will see.
Going to the hospital and seeing her and her freind is hard. But it must be done because I’m sure it’s 100 times harder for them. Both of them are fitness fanatics aswel which just shows. Thank you for the explanation of the drugs and how they work and your well wishes. We are hoping this Friday will be more of a success…has been a couple of weeks now.
anyway thank you it’s all very helpful and appreciated :)
I am fine, thank you.
I was very tired in the beginning but then I then I guess my body became more used to it, although I slept a lot too. Best thing your Mum can do, under the circumstances.
Everything crossed that their next sessions go ahead.
Irene xx
Well her WBC had gone up from 1.2 to 2.2 in a week which was good. So she started cycle 2 of 6 today. Of the 3 drugs. As she’s on the trial department was just in a room on her own, so I’m glad I went with her. Unfortunately her friend was below the wbc count so wasn’t there and the companionship was missed.
she was finding it tough today and irritable which is understandable. You get this bag of drugs to take home,even though she feels fine is it advisable to take these to prevent the after effects of the chemo?
sadly was one of her down days and was feeling upset about her hair, I think that’s been the hardest part of the chemo so far. Keeping the encouragement going is important I find. Seems to be a big mental fight aswel as a physical one.
You have to take the positives I guess, least she got the treatment this week, feels ok. And had a nice nurse who helped the mood :) Al
I am so pleased her WBC had gone back up and she was able to have the next session. And I had forgotten all about the big bag of drugs! I had to write down all the instructions as they were for different times of different days. I too, didn't need the anti-nausea medication as the steroid they gave me at the start of each session seemed to be enough.
Seeing yourself with no hair is a big psychological loss, and she may feel the same way or even a bit worse when she starts to lose her eyebrows and eyelashes. It is a very strange experience, for me it was like gradually seeing the features on my face erased. I was always an eyeshadow and mascara girl, and my daughter was wonderful and bought me various soft pencils and shadows to use. We had a couple of make-up sessions where she experimented to find the best look for me. It was a big boost once I had my face on!
You are so right, keep up the encouragement (and don't forget to look after yourself too).
Irene xx
Thanks Irene :). WBC has been up again this week so she had her treatment and her friend was also able to proceed which was good.both have been very tired like you said-but best to rest up and they are doing.
Sounds like your daughter has really helped you there and I’m glad that’s been I’d benefit, really anything that’s going to help is worthwhile. There is some course at Maggies her and her friend are going to on makeup which sounds good. Interestingly aswel there is an anal cancer convention next week - they are going to that so maybe there will be some info gained we can circulate on here potentially.
she has lost quite abit of weight which is noticeable as she was quite slim to start with. Did you find that yourself Irene/Jane? It’s the treatment but also the stress I feel, but she’s still eating well.
they each have scans next week I believe. They both seem to be hedging a great deal on them, but only a third way through the 6 cycles…so we have been saying things take time and take each of these 3 scans as a separate event. ie don’t expect miracles or worse case scenarios..Did you find that was a good way to approach them?
Thanks as always
Al
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