Been struggling with my blood levels for long while; finally had a bone marrow biopsy and aspirationNov 2020, and was diagnosed with CMML2 on 29 December.
Treatment is Azacitidine chemo for 3-4 cycles and referral to Addenbrookes for a potential SCT.
The Azacitidine is subcutaneous and for 7 days out of a 28 day cycle. I’m on second cycle and today feeling v low.
Initial appointment with Addenbrookes postponed for another 2 weeks to end of March, the treatment looks fearsome but only curative hope.
Meanwhile my skin reacts so badly to the Sc injections, I get huge red hot patches that don’t cool properly until on the chemo break between cycles. Then I’m left with lumps and bruising. Recommended treatment is cool compress - but that only works while being applied.
Other side effect is tiredness and aching.
Today my appointment was 1hr 10 mins late, and my anxiety levels were through the roof, and now I hurt, ache and am fed up.
So, my introductory post is unhappy - sorry. The pandemic is isolating and there are no support groups, cups of tea etc available.
Additionally my blood cancer is very rare - so it’s been impossible to find someone to share experiences with.
Any tips on coping with the hot red patches would be welcome.
Again, sorry first post is downbeat
Hi @ChrisCKW, please don’t apologise for feeling down and having a rant in your post. It sounds as though you’ve had a really tough day, well few months. What a hard time to be diagnosed as well. I think the way you are feeling is completely natural and how we all felt at that initial stage. It must all be very overwhelming for you and the side effects of treatment are so hard. It can be emotionally and physically draining and I’m so glad you found us for support. Do you have people around to support you? The blood cancer support line are so great as well. If you have any questions or need a chat, they are the end of the line. I really hope you are taking care of yourself? Are you managing to sleep. Sending extra special wishes your way tonight. Will check in tomorrow and see how you are doing. Keep sharing
Hi @ChrisCKW, you have already shown the value of our community forum, it is a place where you can honestly say how it has been and is with you and we will understand as perhaps others cannot. It takes courage to post on here to start with and you never have to apologise for being honest about your feelings on here.
I also find that sometimes it does not matter which blood cancer we might have we often share similar fears, thoughts, feelings, symptoms and practicalities.
My emotions have been all over the place since lockdown so I cannot imagine what you have been going through with your tests and treatments during this time.
I can relate to your appointment being an 1hr 10min late and your anxiety and levels going through the roof. Anyway I find all medical appointments absolutely wipe me out.
I cannot help you medically, perhaps it might be worth talking to one of your medical team about your side effects to see what they say.
I am not surprised you are fed up. The main thing you can do is to really look after yourself and even have the odd treats.
You are not on your own now you have this forum and we are all here for you. If you would like to talk to someone the support line details are above.
Do you have any support from family or friends?
In bed v tired, thought I’d check here before sleep and now feel far less alone thank you.
In bed v tired, thought I’d check here before sleep and now feel far less alone thank you (and sorry for ditto reply - I am v tired)
Night Chris. I hope you feel better after a hopefully, good nights sleep x
How are you feeling now @ChrisCKW?
Day 6, injections 11 and 12. Smothered in large hot red patches and bruises - I look like I’ve been attacked with a baseball bat. My front thighs, outer arms and stomach barely have any normal skin left. I feel exhausted- and am sleeping poorly because of chemo and because I can’t sleep on my side (too painful)
BUT last day tomorrow then I have 20 days chemo free, so that’s a real break to look forward to ( still have blood tests and consultations etc - but they’re ok).
But thanks Erika, it’s nice that you’ve checked up on me
Hi @ChrisCKW. I can’t wait for you to have 20 days free of chemo. Hopefully it will give your body time to recover. It’s sounds both physically and mentally exhausting and lack of sleep makes everything 100 times worse doesn’t it! Have you got some nice treats planned for yourself. I know it’s hard to forward planning but just have little things around to cheer you up. As Erica said, remember the support line if you need a chat. Really wishing you a better night tonight X
Hi @ChrisCKW, 20 days chemo free sounds a great break to me, hopefully it will give you a chance to take care of yourself, get some sleep and rest and recharge you batteries. By the way I find blood tests and consultations exhausting too.
I hope your red patches and bruises improve.
Please let us know how you are and what is going on for you.
Nothing planned - lockdown makes things so difficult esp as I’m clinically extremely vulnerable.
If I want to go walking I have to go at dawn or dusk to avoid people. But with days getting longer and the weather less snowy that should become easier.
I live 60 miles from daughter (Norwich) and 150 miles from son (near Chester) so no visits.
But suggestions of things to do welcomed!
Hugs and huge thanks for the support.
Blood tests don’t bother me (used to be blood donor; then have been having blood tests for about 15 years!), and consults mostly phone call ones now.
How often do you get tested?
And thank you again for being supportive x
Hi @ChrisCKW I have read your responses to @Nichola75 and I, it must be tough with your children being so far away. My son is a couple of miles away but, the same as you, I have not seen him for what seems forever.
I am now on 6 mthly blood tests that are timed to coincide with my osteoporosis blood tests.
Yes, so many consultations are by phone these days.
Take care and recuperate and we are, as always, supporting each other on this forum, but extra specially through Covid times.
I’ve got back into puzzles! Actually, I’m a bit obsessed now. Something that keeps my hands busy and my mind occupied. I’ve been listening to audio books as well. Not everybody’s cup off tea but I enjoy it!
I have Myelodisplasia RAEB2 I was diagnosed in November 2014.
Today was day 5 of my 81st monthly cycle of Azacitidine to prevent my eventual progression to AML.
I too was treated on a 7 day treatment for 6 months after which condensed into 5 days in every 28.
The only side effect l get is slight soreness at the site of the injection, which lasts for a few days.
I’m always tired due to the cancer exacerbated by the chemotherapy. It takes me a few days to recover.
I was 70 at the time of my diagnosis with a poor prognosis and considered too old for a STC.
Contact Pilgrims Hospice where you live.
I have had 2 courses of counselling from them which I didn’t benefit from, but I have been allotted a Patient Welfare Social Worker who phones me every week and is extremely supportive.
We talk about a great range of subjects not even related to cancer which I find very uplifting .
Macmillans have a 7 day help line 8am— to 8pm on freephone where you can get medical and financial and even emotional issues if you just want someone to listen to the way you feel.
It’s a lonely road we travel Chris and often hard to deal with.
Contact both of the above and I’m sure you will benefit from the help they can offer, as I have.
Best wishes and good luck.
Wow, 81st cycle! You are inspirational x
Today was day 7 of my second cycle. I’m on every 28 days -so now have a whole 19 days to recuperate.
Thank you for both tips; I’m so newly diagnosed that the word hospice is still a touch scary. But the idea of the patient welfare call sounds friendly.
I think the pandemic has isolated so many people, but until I found here I did feel particularly lonely.
I hope you sleep well, I think maybe tiredness is aggravated by poor sleep during the chemo cycle. And thank you for your kind encouragement and support x
I can understand your wariness of Pilgrims Hospices, I felt exactly the same fear and trepidation.
They magnificently supportive, Macmillans likewise who even have an option to explain the emotional upheaval you are undergoing.
I live alone and with no one to share your worries and anxieties with they can be overwhelming.
Give Macmillans a call this morning, they are open in under an hour on 0808 808 0000. Explain how upset and worried you are, you’ll feel hugely relieved to get it all off your chest
Anthony, I feel lucky to have ‘met’ you. Thank you for being so supportive and kind
Highlight of my day is going to be the shopping delivery!
I’ll think about giving people a ring - thank you for the number, I’ve got it written down now
Have a gentle day - it’s cool here!
Hi @ChrisCKW I am equally as excited about my Sainsburys delivery this morning !!!
it’s the little things that get us through the days! xx