Waldenstrom's Macroglobulinemia

[Belcar45]

Hello Chris just wondering if you had an email I can send you my blood tests to do you can compare to your please cos mine are all over the place my platelets are 686 and my haemaglobin is 84 red cc is dropped to 3.00

[Chrissy5]

Hi Ben,

So pleased to hear from you Ben,sorry it’s been a while since I last wrote…life has been a bit crazy of late.😵

I was told about 7weeks ago that I will be going through 6cycles of chemo in the next 6months,and I should  finish about a week before Xmas. I have since had one cycle of 4 days straight (that will be each month) so 5 more to go, Plus I  still have to have my intragam another week each month.

The 4 days straight is pretty tough and by day 4 I have to drag myself out of bed to basically get there. All good, I have fabulous family and friends who rally around me and keep on giving me encouragement none stop, and I always apologise…especially to my husband before hand if I get a bit out of sorts…that I’m truly sorry.

Ben I know what your saying about  your blood readings, Iv actually stopped looking at them for a couple of weeks now…it’s dam depressing and very confusing.😵‍💫My levels are all over the place and not much of it is normal unfortunately. I once said to my oncologist that my life in basically in your hands,and that’s the reality of it all. We have to trust that they have our best interests at heart ❤️ while they are trying to get a handle on our rotten cancer it will alter just about everything, pretty potent those drugs! All my levels are very low or extremely high,my white cell count is very low atm so just staying at home in the Hope I don’t get sick or a temperature.I am taking antibiotics every day anyway to hopefully  ward off anything that starts.😬 So I know it’s harder said then done but try not worry about your levels ,trust that your Dr is watching closely…but keep asking questions,they like that and it prompts them to question different options 🤔 our blood results are more then likely similar in some respects but also very different in others due to different types of chemotherapy and drugs that we are taking.I hope you have not been too ill 😷 and managing to eat sleep and do most things that you normally would do, although I myself have to change arrangements at the last moment.That’s ok too.

Please stay in contact,I enjoy hearing from you and how your going,take care.😊

[Belcar45]

Hello long time no speak I just thought I’d say hello and see how your health was going anyhow i hope your well I’ve had a few ambulance trips to hospital over the last couple of months most recently pneumonia nearly killed me lol hope to speak soon 😊

[maryfrancis3]

Hello Belcar45 😃
So lovely to hear from you.  

I am so sad though that you have been having a rough trot.
Are you feeling ok now? Is the WM flaring up again as well? You mentioned a few hospital visits.

I am doing great. My bloods are behaving themselves still. But I am one of the lucky ones as my WM was only at 20% infiltration when diagnosed. Most get diagnosed when infiltration is over 50%. 
I still have check ups at Olivia Newton John Centre every six months. 
Sending you lots of virtual hugs 🤗

[Belcar45]

Hey sorry late reply that’s great to hear your cruising along reasonably well😊😊 let’s hope you stay in a good health position 😊😀 
My last hospital visits were my last until writing this touch wood 👍😊 My lungs and heart hasn’t fully recovered nor will it so I’m feeling how I was last year which is okay for now but I’m having a lot Neuropathic pain from my lower back and it’s radiating from my right side of abdomen to my back and a bit higher in between my shoulder blades but I’ve got some good pain relief over last 2 weeks which has significantly helped I’m still waiting to see a pain management specialist but I’m waking up each day can’t hope for much more but I hope all our friends on here are doing as well as they can be 😘 😊😊