@anxietyalldaylong
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- January 23, 2023 at 3:14 am
Thank you so much for your reply Celeste ! I really hope it’s nothing because I am really scared to leave my husband and kids behind !Is it generally a usual thing that happens during immunotherapy ? Shouldn’t it have already shown in the first months ? Why after one year ? And also is it possible for the LDH to rise for another reason ? I though that this is indicative of recurrence along with the lung lesions…
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- August 1, 2022 at 2:04 pm
Thank you so much my dear friends for your kind replies ! I spent another 2 weeks full on anxiety, I am sorry I am late to reply. Thankfully everything went well, my onc prescribed me the paxlovid and after 2 days I felt much better.Then of course my anxiety hit again and I was scared of rebound, so more sleepless nights for me ! I hope everything will go better in the future for al of us ! Thank you again for being such amazing supporters for all of us in this forum !
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- July 7, 2022 at 2:50 am
It’s amazing how many mistakes can happen without the patient being informed !Regarding the report, my onc believes that the reason for not writing a specific suv is beacause the value seems to be the same with the overall FDG-avidity of the lungs, so he is not sure whether this avidity is specific to the nodules. He says the avidity is not shaped as the nodules either. I am sorry if I can’t explain this correctly though.
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- July 6, 2022 at 2:49 pm
Hello dear Ed ! Thank you so much for making this great effort to reply to my post ! Thank you so so much, this means a lot to me !!!This is the report of my scan:
Physiological supra- and infra-tentorial glucose utilisation. Mastoid cells and paranasal sinuses free. Cervical lymph nodes without enlargement or metabolic pathologies.
Mixed response of the pulmonary nodules with some of them increased in size and resenting faint FDG-uptake, (e.g. of the RtUL T LtLL Se1451/Im145,169 to Se16/Im52,142; from Se16/Im54,149 on previous exam), partial response of others (e.g. from Se16/Im47 to Se16/Im46) and complete remission of others. Absence of pleural or pericardiac effusion. Normal appearance of the mediastinal and axillar lymph nodes.
Physiological and homogeneous hepatic metabolism. Normal metabolic status of the rest parenchymatous abdominal organs. Infradiaphragmatic lymph nodes of normal size without FDG-uptake.
Complete response of the lesion of the 10th left rib.
Complete remission of the FDG-uptake of the skull.No suspicious cutaneous/subcutaneous FDG-uptake. Metabolic normalisation/remission of the back and posterior pelvic subcutaneous infiltrates.
Thank you again for all your help !
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- July 5, 2022 at 8:07 am
Hello everyone !I am very happy to hear that many of you had good results !!!
I am sorry to not post since January. My CT came back with multiple ground glass nodules, increase in size of two of my lung nodules, had in the meantime even more subcutaneous nodules and a triple sized increase of my bone met. My onc decided to continue with keytruda until my next scan which was a PET-CT. After 3 more months I got my scan two weeks ago. My bone mets have disappeared, almost all my lung nodules disappeared and all my subcu mets disappeared except two which have become very small.
The only thing that made me anxious is the fact that one of the lung nodules that had increased in size in the CT has remained the same in size, and also now has very faint FDG uptake, which it didn’t have on the very first PET I had before starting keytruda. My onc believes that since all the other areas are showing improvement, it could probably be faint residual uptake due to the immunotherapy and subsequent inflammation that took place. Has anyone had any idea if faint uptake on a lung nodule is bad ? Shouldn’t it have a higher SUVmax ?
Nevertheless I feel very happy now !!! Thank you for all your support ! I have had a very depressing 3 month period !
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- March 18, 2022 at 12:43 pm
Hi Mia ! I had thyroid problems with pembrolizumab as well, it started with hyperthyroidism and then progressed to hypothyroidism. It’s a fairly common side effect of ICI and usually treatment can continue. Also do keep in mind that your thyroid hormones should be monitored closely since hyperthyroidism can easily convert to hypothyroidism and fast. It has to do with the activated lymphocytes attacking the thyroid gland. So hang in there and hopefully everything will go well ! Keep us updated ! -
- March 18, 2022 at 12:38 pm
Hello ! I don’t have a personal experience with true scar recurrence but from what I know it is indeed defined by recurrent radial growth very close to the previously excised melanoma. It is not considered a metastasis and restaging is initiated with WLE and sentinel lymph node biopsy. So there is no need to panic ! It is described in formal guidelines so it’s not that uncommon. If the new breslow thickness is superficial and the SLNB is negative I don’t see a reason why the prognosis should be changed ! So hang in there, we are all praying for you ! I wish all your results to be good ! Keep us updated and don’t lose your hope ! -
- March 18, 2022 at 10:33 am
Thank you everyone again for your kind replies, you don’t know how much strength you’re giving me !!!!The ctDNA analysis came back negative. Is this a good sign ?
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- March 14, 2022 at 3:38 pm
Thank you so much everyone for your kind replies ! I really hope that it’s not true progression but my gut feeling is telling me otherwise…Does anyone know about ctDNA tests ? I was given the option of trying it. Do you have any experience with this ?
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- March 14, 2022 at 4:10 pm
Sorry I have seen that Celeste has already recommended this. Celeste do you know how often I can do this to see the trend on the levels, since I don’t have a baseline value yet ?
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- January 9, 2022 at 3:10 pm
Thank you so much both of you for your kind help ! I feel a little better reading these sources. I hope everything will go well for everyone and this year will be better !
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