Questions after first chemo....

Hi

I see you've put this on the chemo thread too, but thought I'd say a warm welcome here. Sorry that you find yourself amongst us, though. I think you'll get some replies on the chemo thread and it's always good to be getting tips from people going through treatment at the same time as you. My treatment was a few years ago and I didn't cold cap so can't share anything about that, I'm afraid although from posters on here, the fit does seem to be the most important thing. 

As for the headaches - if they are on days after your treatment and not just while you are wearing the cap, then I'd mention it to the onco team and see if they can give you some stronger painkillers for them - they have drugs for every side effect. It could also be stress related, of course but I think it's important to tell them everything.

The tumour pain thing - that does seem to be a thing. My BCN used to tell me it was a good thing but like you, I used to wonder if it was my imagination - also worth mentioning when you see your onco team. 

Hope the rest of chemo goes well for you and just give a shout when you need us!

R

Thanks so much for coming back to me ronstar  

I've heard it is all about the fit with the cold cap - such a quandary when you've never experienced wearing one before so how do you know what is right?!  I am a terrible worrier as well so now all I am thinking is 'it wasn't on right" - as if I need anymore to worry about right now 

I will definitely speak to my oncology team about the headaches which have incidentally subsided today, which is good! Fingers crossed they stay at bay.

I will ask about the tumour as it is quite painful today - hopefully, it is the chemo working + kicking it's a** 

I had another question actually...I can't seem to clear my chest + it seems like I can feel my picc line in my chest - is that possible do you think or again the chemo?  Totally paranoid (as I haven't had my CT results back yet ) that cancer has spread to my lungs + that is why I can't clear my throat   Need to start thinking positively - one step at a time but it is hard isn't it?

How are you doing?

Pxx

good to hear the headaches aren't troubling you so much. I think paranoia is normal - even after treatment we are more cautious. As for the cough, it might be worth giving your BCN a call for reassurance -simply because it's really important to put your mind at rest and the medical team are the best people to do that, I'm sure it's nothing. They know we all get worried about everything - I lost count of the amount of times I called them. 

Yes, it's hard but you'll get through it - no-one expects you to be positive all the time, it's quite a shock to get the diagnosis and then have to go through the treatment which is exhausting even if you don't have too many side effects!

Remember to be kind to yourself

R

Hi 

You're right about the fit of the cold cap - it needs to be in contact with your scalp in order for it to do it’s job, though the crown of the head does seem to be the most difficult part to fit.  Could you feel the gap on the top of your head and if you pressed down, did it feel cold?  If so, it sounds like the cap might be too tight.  Maybe when you go in next time, before you start, ask to try the medium size to see if that’s better and maybe try both the small and medium top covers to see if that makes any difference too.  Hopefully one of those combinations will help and it’s worth taking the time to get it right.

I managed to keep most of my hair during my chemo, though the crown did thin a little bit but not to be noticeable, even by my hairdresser. So it’s worth persevering!  I didn’t experience any headaches using it but then again I’m not prone to them.  I can imagine the coldness over an hour or so bringing one on, especially with a tight cap.  Fingers crossed it’ll be better after your next session.

Hope that helps. Best of luck with your treatment. Don’t be worried about phoning your BCN about anything, or the emergency hotline number - they’re there to put your mind at rest and having never been through this before, we don’t know what’s normal and what’s not!

Loffie x

Thanks so much for coming back to me Loffie That is exactly what happened with the cold cap - I could feel it was cold when I pressed down on the top of my head but otherwise it wasn't. I will definitely try the medium next time - do you think it's too late for my hair now that I have done 1 session with what may have been the wrong fit?!  Impossible to know or tell I guess.  Will absolutely try the different sized covers - good tip, thank you!

Great that you managed to keep your hair - were you on EC + taxol?  I think the headaches may be chemo-related as I am not prone to them so will be asking my onco team next week when I see them.  Maybe they can at least give me some stronger pain killers in case it happens again.

Pip x

Thank you so much ronstar

One day at a  time + one foot in front of the other is the only way.  My sister has been saying that I just need to focus on what I know which is that I have TNBC + it is also in some lymph nodes + not what I don't know i.e. is it anywhere else!  Control what you can control + forget what you can't.

I am using the mantra "I am brave, I am strong + I will survive" to try + get me through each day.  Some are better than others but it is a process after all I guess so as you said, on the dark days, I make sure that I don't give myself a hard time

Hope you have a lovely evening.

Pipxxx

Hi .  I don’t think it’s too late for your hair. I had a couple of sessions where I felt the same as you, that it wasn’t fitting tightly to my crown and I still kept my hair.  I tried different sizes before one of my sessions but went back to the original small/small combination.  You’ll know when you try the medium if it’s better or worse - the medium was far too baggy on me so it was an easy choice but at least I know that I’d tried it on.

I had weekly Paclitaxel x12 so don’t know about EC I’m afraid.  Yes definitely mention the headaches and the nausea and they can hopefully recommend the right meds for you.  Keeping my fingers crossed for your next session and let us know if  we can help further

Loffie x

Hi there, so sorry to hear about your headaches.I don't think it was the Cold cap.

My short brief, I had a routine mammogram in Sept 2020, I was called back and was  diagnosed with Breast cancer, I was informed that I would have an operation within 4 weeks, which I did, all the while not absorbing that I had cancer, in disbelief. Initially was told it was grade two cancer and they had found a second lump too which they had removed as well as extra tissues and it had come clear, however, they would be sending my cancer cells to the USA for Onkytype genetic coding, as I was borderline for Chemo and they wanted to know how far from borderline as they presently had recommended me for Radiation therapy. However whilst still recovering from operation, they informed me the report now came back stated that they recommended me for Chemotherapy, as I was over the borderline, and my cancer is now grade 3 and an aggressive cancer which meant it was growing fast. I was very upset, but resigned to the fact it is what is it, and this is what I have to go through it to ensure against future return of cancer coming anywhere in my body.

I had to buy my own Cold cap as the hospital stopped providing them due Covid 19 

I bought from Amazon it was recommended by Doctors, it was expensive, however, due to delays, waiting for Chemotherapy medicines to arrive,  i had to take it off in the end as the gel packs had melted and were not going to help. it was money wasted.

I did not get any headaches. (however, before 1st chemo session I had cut all my long hair to a pixie cut), but I lost all my hair by the second week and stragglers i shaved off. It wasn't fun seeing them all over the pillow, bed sheets, duvet covers, in the bath, carpet, surfaces, also the follicles had become painful from moving on the pillow or touching my hear, so shaving the final bits off helped i did have silk caps and silk pillow cases that helped quite a bit. I also got a purple tongue and a bitter taste in my mouth, so food wasn't that enjoyable.

By the third week i was more energetic and able to do walks and office work from home. Broken sleep is horrible, waking up 3 times a night, so I snatch sleep during day now. Needless to say the day, and that week after Chemo I found I had a low tolerance and a quick temper,much to the dismay of my family, who didn't understand.

I have just had my second Chemotherapy yesterday, which this time it hit me earlier, than the 1st session, I had night sweats checked temp, i now have a very dry mouth and throat and didn't sleep more that three hours last night, and that was in two intervals. But as  each one is done I am saying another down so less to go through. My Chemo nurse told me to recite positive affirmations every morning in the mirror to myself, which i have done on a few occasions.

Thanks Loffie

I mention the EC as apparently, hair salvation is not likely with that combo of chemo but we will see I will also be having weekly paclitaxel x12 - how was it? 

Pip xx

Hi 

I think you should probably just wait and see what happens with your hair in the next week or so. You are right that EC is very harsh on the hair and most people do experience fairly substantial hair loss. I am sure we have all worried that the cap wasn’t fitted properly- I know that I did as the nurses struggled to get the right size and fit and at the end the cap came off more easily than I was expecting. I am now almost half way through my 2nd cycle and my hair is much thinner, especially on the crown - not bald yet but definitely very very thin!! But I don’t know if this has been made worse by the fit of the cap or if it is just the luck of the draw and I have decided not to add that worry to all the others. 
I would definitely raise the cap fit with your nurses next time and ask to try a different size to put your mind at rest. 
You may be one of the lucky people who only experiences a slight hair loss. But if not remember that Paxman always advise that you concentrate on the hair you have retained rather than what you have lost. After two weeks of shedding mine has definitely slowed down a bit and I am wearing a wide stretchy hair band to cover my thinning crown. 
You also need to raise the headaches with your team. You should not have to suffer and I am sure they will prescribe stronger painkillers for your next cycle. They want to get us all through this as easily as possible. 
Good luck